Calling all triple negative breast cancer patients in the UK
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Swabbing in full PPE in 36 degree Celsius no fun! Vaccine program starts in 2 weeks with Pfizer vaccine. Big concerns about the cold chain and transport to rural and remote areas. Hope everyone doing well
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Hi Kath,
I share your concern about Pfizer storage problems, especially in a hot country. Astrazenica is more widely used in the UK as it can be stored in normal fridge conditions. Having said that, both Michael and I have been given Pfizer vaccinations at a local health centre. Just have to hope that it was stored properly.
Keep up the good work.
Love,
Gill xxx
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Hello Sylvia,
I do wish that Elzie would get back to us. She was extremely worried about her biopsy results and may be in a very depressed state. It really does help to share these very difficult and frightening issues with those who've experienced breast cancer themselves. Like you, I'm wondering how cocolala's breast reconstruction went. It's a very long operation so I'm hoping that her results will be all she wished for.
The French magazine with articles from around the globe confirmed what we already knew about this appalling Government. Our right wing press have conned people into believing that Brexit is a good thing and Johnson's toxic Cabinet are doing a sterling job of running the country. The many Tories who Johnson expelled from the Party are much missed. I'll never be a Conservative but I'd prefer to see the likes of Dominic Grieve as Prime Minister. I remember Ken Clarke's speech to Parliament after Johnson had thrown him out of the Party. He said that he no longer recognised the Conservative Party and it was now just the Brexit Party rebadged. He described Johnson as a 'knockabout' character who had a philosophy of crashing things through. He also said that this was the most right wing Government that the Conservatives had ever seen.
The Government's mismanagement of the pandemic has cost 120K lives so far. This is without the loss of lives resulting from essential surgeries being postponed. Not one word of apology for his failure to follow his scientific advisors and go into lockdown earlier and close airports. The disaster that is Brexit is rarely mentioned. I fear for our NHS, but who in the Tory party will speak out and stop the rot before it's too late?
Michael's visit to the dentist didn't go well. He needs a crown on an upper molar, this will cost £250 for an NHS crown or £600 for a private crown. Not all bad news this week as he was given his Pfizer vaccination yesterday. No side effects at all so far. There appears to be a vaccine shortage in parts of England. One of Norwich's main hubs is only able to vaccinate every other day and my daughter is disappointed that the vaccines in her area area still only arriving in dribs and drabs.
That's about all for now. Have a peaceful weekend both of you.
Love,
Gill xxx
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Hello Kath,
Thank you for sending your photograph showing you in full PPE. It must be awful wearing that in such heat.
I do hope all goes well with the Pfizer vaccine programme when it starts in two weeks time. I do wonder how the Pfizer vaccine will be protected in such heat. I am assuming you have already been vaccinated.
I sometimes wonder about the differences in these vaccines and all the rivalry. Raymond and I had theAstra Zeneca at a local pharmacy and we did not have any choice. We now have to wait twelve weeks for the second dose because our Prime Minister decided not to follow the instructions on the label!
Vaccines now seem to be growing like mushrooms!
Keep in touch.
Love and best wishes.
Sylvia xxxx
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Hello Gill,
As you say, we have no idea what has happened to Elzie and cocolala, but I do hope that, if they can, they will have the courtesy to reply.
I do agree that we have an appalling government. Like you, I would never support or vote for a Tory government. As you know, I would like to see a properly elected people's government, based on a real majority and within a federal republic. I cannot think of anyone in Boris's cabinet that is of any use. Boris is a gimmick person and has no depth.
I dread to think of what is going to happen in the coming months. I am so weary of it all.
What did you think of Keir Starmer's speech? I did not find it very uplifting. We need someone with more get up and go, but I cannot see anyone, except perhaps Angela Rayner. She could wipe the floor with Boris Johnson.
It has been a tiring day today. I am still helping my cousin and trying to motivate him. Raymond has not had a good day and was suffering from low blood pressure this morning and feeling very lethargic. We do not think the betablockers are doing him any good.
I carry on, multi-tasking and it is a good job I have a very versatile brain that is used to switching tasks.
As for crowns, I know that they are very expensive. I was glad to know, however, that Michael got his Pfizer vaccination and that all is well.
Have a good weekend.
Love.
Sylvia xxxx
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Dear all,
I'm so sorry I did not get back earlier. Thank you so much for your concern
I was hospitalized for a week, then go back for check up and dressing every few days. Overall, the surgery went well, but perhaps due to my body nature that heals slower, the tummy area did not heal as per the surgeon's expectation. I was told it's just superficial and not to worry, thus the need to do dressing daily at home and hospital visit at least once a week. My arm is very tight this time compare to previous lumpectomy, so have to do arm exercises daily. I also still can't stand up straight, guess it will take longer than others.
My report shows that ER PR negative but HER2 is now positive, and another FISH test that came out yesterday confirms this. No lymph nodes involvement, no lymphovascular invasion, and PET CT scan also shows all other area is clean. So now I'm not triple negative?! But HER2+ is very aggressive as well, and the treatment cost is very high. I know 2 ladies who relapsed within 6-12 months after completing treatments.
Previously my tumour was 2.5cm with only 4mm cancerous, but this time the whole 2cm tumour is cancerous, and it's Grade 3. Breast surgeon said most likely I will have to do chemotherapy, which I will get my oncologist' opinion tomorrow.
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Hello cocolala,
It was so nice to hear back from you and I do understand that you have been going through a lot.
Thank you for taking the time to give us the details of what has been happening to you.
It is good news that the surgery went well and I am sorry to read that the healing is going slowly. Just be patient and tell yourself that it will heal properly over time. At least, you have been told that wound is just superficial. Keep on with the daily dressing and your weekly hospital visits. Remember that surgery with reconstruction is a much longer surgery than straightforward breast cancer surgery, so recovery will take longer.
You mentioned that your are feels tight and that you are having to do arm exercises. Even with ordinary breast cancer surgery we are told to do exercises straight-away, at least that was my experience. I remember the day after my surgery, a mastectomy, a physiotherapist came to see me and showed me exercises to do. Do you think you have lymphoedema? This is quite common after surgery and requires gentle arm-lifting exercises to keep the lymph moving around the body.
I was interested to read that you are no longer triple negative but are now HER2+. I do know from my oncologist of nearly sixteen years ago now that cancer cells mutate. The good news is that there is medication to treat HER2+, the most common seems to be Herceptin. Do you have to pay for your medication? Be positive and tell yourself you will get through this. Keep in touch with us on the thread and we shall support you. Looking at your details, I saw that in 2019 in March you were HER2+ and then in May 2019 you had IDC and then you were HER2-. Now you are HER2+. Has anyone explained all this to you?
Let us know what happens about possible chemotherapy treatment.
Sending you love and best wishes.
Sylvia xxxx
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Hello everyone.
I am just popping in to say that I hope you are all managing to have a good weekend despite the strange world of coronavirus that we are living in.
I wanted let you know that yesterday February 20th I marked 15 years and 8 months since diagnosis. If I can do this so can you.
Remember that when I was diagnosed, I was told that it was a poor prognosis because I did not have hormonal positive tumour status and so tamoxifen would not be of any use to me. The term triple negative was not mentioned at the time.
Best wishes to all.
Sylvia xxxx
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Hello cocolala,
I'm relieved to hear that your surgery is over. I would imagine that having fat and skin cut from the abdomen would be fairly painful, so you'll be relieved when it finally heals. It's very good news that there are no lymph nodes involved, no lymphovascular invasion and the rest of the area is clear. That's a good result. Helenlouise, a regular poster on the thread also found that her triple negative breast cancer had morphed into HER2+. It might be useful to look back at her posts. She has Herceptin and Perjeta meds. I don't know if the healthcare system in Malaysia pays for these therapies or if you have to claim via insurance. I hope there won't be a problem. There are many women who do very well on Herceptin. I don't think you should consider that the two ladies who relapsed to be any sort of indicator of what your future holds.
Let us know what your oncologist advises. You'll probably feel much more positive once your treatment is underway. I hope that you have someone to offer you support, I'd usually recommend taking a friend or partner with you to hospital appointments but that's probably not allowed during the pandemic. It's a difficult time for you I know, but try to look forward. Please come back to us whenever you feel like it.
With my very best wishes,
Gill xxx
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Hello Sylvia,
I was sorry to hear that Raymond is suffering from low blood pressure. My own experience with beta blockers was extreme lethargy, but I know that they can also cause low blood pressure leading to visual problem, dizziness and fainting. I took them to break the cycle of migraines I was having and they worked extremely well. Will Raymond need to take them long term? I expect you'll have done your research into beta blockers and know that it would be unwise for him to suddenly stop taking them.
Congratulations on your 15 years and 8 months post diagnosis. I'm 2 years and 6 months this Wednesday. Still very early days for me.
I agree with you that we need a stronger opposition leader. I'm afraid that we need someone who will stand up to Johnson and that isn't Keir Starmer. We also need a new Speaker who has the strength of character to actually stop the weekly 'Boris Johnson Show' that Prime Minister's Questions has become. His treatment of Ian Blackford is outrageous, yet the Speaker merely chides Johnson like nanny reproaching a small child in the nursery. I have to wonder if Johnson actually wants the Union to split.
I'm pleased that cocolala got back to us. She could do with some good news from her oncologist. I've read plenty of uplifting posts regarding Herceptin so I'm hoping that she'll look at some more reassuring statistics. The two women cocolala knows who relapsed within 6 -12 months of Herceptin therapy may have had other issues or they may simply have been unlucky. I was more concerned about her being able get access to treatment, but Malaysia seems to have an excellent and very accessible health care system in place.
We had a very sunny and warm weekend here and went for a long walk around the village. Of course, the rest of the village had the same idea. Walking seems to have become very popular during lockdown and it's the one chance we have to see other people in safety, even if we can't get too close.
I hope your GP can offer some advice regarding Raymond's beta blockers.
Keep well.
Love,
Gill xxx
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Hello Gill,
Thank you for your latest post.
The low blood pressure was mainly in the morning, even though Raymond had taken our GP's advice and took the beta-blocker in the evening before going to bed.
Beta-blockers are used in coronary heart disease for lowering blood pressure, but it seems to be assumed that everyone with CHD has high blood pressure! Raymond has always had normal blood pressure. There are different categories of beta-blockers, cardiac selective and non-cardiac selective. Raymond was on cardiac selective, bisoprolol, and it has caused him problems all through his hospital stay. We both kept saying that he did not need his blood pressure lowering! Beta-blockers also cause Reynaud's phenomenon, cold white hands and feet.
This morning Raymond had a phone consultation with the GP and she has taken him off the beta-blocker. He now has just one soluble low dose aspirin to take. He is happy about this. He was only on the minimum dose of 1.25mg.
Thank you for your congratulations. I must admit that the diagnosis day now seems like a lifetime ago, but I shall never forget it. I did not know of bc.org in June of 2005 and I went through my treatment mainly by myself and just had visits from Hospiscare. It was quite by accident that I discovered bc.org in 2009 when I was looking for information about over-active parathyroid glands and breast cancer. As you know, my oncologist was concerned about high levels of calcium in my blood, which can be a sign of metastatic breast cancer. She, probably along with my breast cancer surgeon, who was also an endocrinologist, had the presence of mind to test for hyperparathyroidism and the test showed that is what I had. I came upon bc.org, met up with sam52, going through the same thing and in 2009 supported each other through surgery and cure. Sam52 had had hormonal breast cancer and knew a lot about parathyroid and the connection to breast cancer. I was told my hyperparathyroidism preceded the breast cancer and so it is possible that it caused my breast cancer. Sam52 started a thread on here about all this. She suddenly disappeared off the forum and we lost touch.
I have been fine all the year since diagnosis, but never take anything for granted. I have been glad at the end of treatment, that I did not have to go on long term medication. I have made healthy eating my medication.
I do have the long term effect of neuropathy in the feet, and know that there is no cure. It does not bother me that much. I just take good care of my feet.
I have had a couple of episodes of lymphoedema, but nothing really serious. I know my right arm is slightly larger than my left but it is not noticeable and I just live with it. I think that everyone who gets diagnosed with breast cancer should ask about all these things and know in advance that they can happen. You do not want them to come as a surprise. Remember that knowledge is power.
It is a good idea to join a forum such as this one on diagnosis. You do not need to go through your breast cancer treatment alone. You are individual and will not necessarily have the same experiences and side effects as someone else.
I was pleased to see that cocolala had got back to us. She will be fine with the treatment for Herceptin and deal with any side effects. Like you, I do hope that in Malaysia she will get some help with her treatment.
I did not really know what to make of the briefing yesterday and am not convinced that June 21st will be the liberation day that the great performer has promised!
I do hope we shall get some more clement days as we leave winter and go into Spring.
I do hope that the emphasis will be taken off coronavirus and that cancer patients will get a better deal. I feel that coronavirus is in the air and we shall have to learn to live with it. I do wish we had a better newspaper press and media in general that would be more sober in what it says and show more responsibility.
Thank you Gill, for your dedication to the thread.
Love and best wishes.
Sylvia xxxx
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Hello Sylvia and Gill,
My oncologist suggested 4 cycles of AC, 4 cycles of Taxol, 17 Herceptin and 15 radiotherapy. He also suggest for chemo por. I know this is common but I'm scared of the idea of installing something in my body, especially when I know that doctor usually not suggest taking it out unless past the 5 years mark. My husband dislike the idea too, but I know my veins are small and it could be a problem for me to have IV injection for 29 times in a year.
I'm using insurance to pay for my treatments. As I'm currently seeking treatment from private hospital, the cost are higher compare to government hospital. I'm not sure how much cheaper is government hospital, some said for Herceptin the drug cost is the same as private hospital but you save on the doctor and procedure fees. Not sure about chemotherapy and radiotherapy though. My insurance can only cover half for private hospital treatments, so I've made an appointment with another private hospital which offer welfare fund this Friday. I will need to see their oncologist, apply for the welfare fund, go through interview and then will know whether entitled or not, and how much subsidy will be given. I hope I can get this, otherwise I will have to find ways to be referred to government hospital.
My Tram Flap tummy wound is getting better, and I'm glad my arm mobility is also improving.
My next appointment with oncologist is on 8/3, which he has arrange for blood test, preparing for chemo. I'm thinking of getting a quotation from him, so that I know how much I need to top up from my insurance. He told me there is a package for Herceptin but not sure what is the latest package available (I know last year they have buy 3 free 1), otherwise I can opt for generic version. If possible, I prefer the original Herceptin than the generic version.
Is changing oncologist because of treatment fee wise?
By the way, my surgeon said DCIS is mostly Her2 positive, but when I had lumpectomy, they didnt test the DCIS lump again, just the cancerous part.
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Hello cocolala,
I had thought that your healthcare system was geared largely towards government funded universal healthcare with private services for those who could afford it. I did know that patients often needed to contribute something towards their treatment but assumed this would be means tested. It seems that the article I read was somewhat misleading. I don't know if I would want to change an oncologist I trusted, but the worry of paying medical bills would also be something I'd need to weigh up. You should have a much clearer picture when you've had a quotation from your oncologist on the 8th of March. If the cheaper meds you're offered in place of Herceptin are biosimilar they will be just as effective and just as safe.
I wasn't offered a port so opted for a PICC line as the veins in my hand were absolutely useless. It was done with local anaesthetic, no pain or even discomfort and no bleeding at all. I would have happily agreed to the port, but probably wouldn't have wanted to have kept it for any longer than the duration of my treatment. It would save you the pain and frustration of multiple attempts to get a cannula in place every time you needed an IV infusion. I absolutely understand that you won't be looking forward to having the port installed and I know that it will be a constant reminder. You could ask for it to be removed whenever you feel that you've had enough of it. Remember, your body, your choice.
It's good news that your tram flap wound is healing and your arm mobility gradually improving. You're clearly doing very well. Preparing for treatment is always a difficult time and more so when you have to consider funding dilemmas. You will get through this. Have your financial questions ready for your oncologist, he will be very used to dealing with patients' financial concerns.
Keep on looking forward.
Gill X
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Hello cocolala,
Thank you for getting back to us.
With reference to a port for chemotherapy, it is true that it is quite common. I had my six months of pre-surgery chemotherapy with a simple cannula in the back of my hand and I did not have any problems with veins, but I do know that lots of women do have problems with this method, especially towards the end of the chemotherapy treatment.
When I was due for surgery, the oncologist suggested that I had a port installed at the same time, because she thought I might need further chemotherapy, so a port was installed at the same time as I had a mastectomy. I then had three weeks of radiotherapy with boosters and that was the end of my treatment and I did not need any extra chemotherapy as I had a complete response to all my treatment. I then discovered that the port needed to be checked and flushed every month. The first month was fine but the second month the nurse could not get it to flush. Because of this I had to hang around, go for an x-ray and was told that there was a kink in the port and that it would have to be removed. This involved going in to hospital for the day and having it removed under general anaesthetic, so I had to do it. I did not like exposing myself to more surgery and I said I would never have another one. I would not have had it installed in the first place if I had known about monthly checks.
As for PIC lines, they are not without problems as they can get infected and they have to be inspected.
It seems as though you have a difficult choice to make. All I can say is that, if I had to go through treatment again I would still opt for the simple cannula, but I do understand your reservations.
As for your chemotherapy, four cycles of AC and four cycles of Taxol is quite common. I had three months of EC and three months of Taxotere. For new people viewing and puzzled by abbreviations, you had doxorubicin and cyclophosphomide and then paclitaxel (Taxol). I had epirubicin and cyclophosphomide and then docetaxel (Taxotere). Taxol and Taxotere belong to the group of drugs known as taxanes.
Are you going to have the Herceptin (trastuzumab) at the same time as the other chemotherapy drugs? I am asking this because a friend of mine, some years ago now, was triple positive and she had her chemotherapy drugs and then when she had finished them she had, as I understand it, Herceptin injections.
It must be difficult to have to worry about payment when you have the cancer treatment to deal with. The last thing about which you want to be worrying is money when you are going through such difficult treatment. I do hope you will be able to solve all this financial side and be able to start your treatment in a relaxed manner and some peace of mind.
I was glad to read that your tummy wound is getting better and that your arm mobility is also improving.
Good luck on March 8th with your blood test. I remember, when I was going through treatment, that a District Nurse came to my home to take blood the day before my chemotherapy appointments. When I arrived at the hospital I would be told that all was well with the blood test and that I could proceed with that infusion of chemotherapy drugs. If there are any problems with the blood, they will not proceed with the chemotherapy that day.
With reference to Herceptin, remember that Herceptin is the brand name for trastuzumab, a monoclonal antibody drug. I would not think there is any difference. You always pay more, in the shops, for brand names.
Keep in touch with us and take care.
Love and best wishes.
Sylvia xxxx
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Hello Sylvia,
I do remember you mentioning that Raymond didn't have high blood pressure a year ago, shortly after his heart surgery. I can't imagine why this wasn't regularly checked by your GP. I'm glad that he's now been given soluble aspirin and taken off beta blockers. His energy levels should improve at the very least.
It's always worth mentioning hyperparathyroidism. Cancer patients should be made aware that high levels of calcium in the blood don't always indicate a recurrence or metastasis. Hyperparathyroidism is twice as common in women as in men and is more likely to be seen in those aged over sixty. If anyone viewing the thread wants to understand more about hyperparathyroidism, the NHS gives a very clear explanation. The symptoms are quite an eyeopener, It's well worth checking this out.
I do agree that we should all be told about the possible side effects of chemotherapy before we have treatment. I doubt if it would have made any difference to me, I wanted to throw everything I could at it, though I don't think that giving me the final dose of Docetaxel was a good idea. Colitis is for life. Like so many side effects of treatment, we learn to live with them. I don't have lymphoedema, but have recently developed numbness in three of my toes, nearly two years after my final Docetaxel treatment.
I read yesterday that some people with symptoms that could indicate cancer are putting off reporting to their GP due to fears about Covid infection . This is so concerning. Cancer simply won't wait.
Whilst not wanting to be over optimistic, I have everything crossed for a June 21st liberation. Johnson put plenty of caveats in place, but our appalling right wing press seem to have missed this.
The weather is sunny and warm here today. My mood is very dependent on the weather, so this will be a good day.
Enjoy your weekend.
Love,
Gill xxx
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Hello Gill,
Thank you for your post.
As for the blood pressure issue, he has told the GP and consultants until he is blue in the face that he does not have high blood pressure, but the medication that is prescribed seems to be, one size fits all. If you have heart problems, especially atrial fibrillation, you must have high blood pressure. This is because a lot of people with AF have high blood pressure, but not everybody. Nevertheless they issue blood pressure lowering pills and then wonder why, with someone like Raymond, your blood pressure plummets, and then they start filling you up with fluids to get the blood pressure up, and then put you on diuretics to get the fluid down. I am sure his energy levels will now improve. Because he had the triple bypass surgery he no longer has atrial fibrillation any more. He was told this straight after surgery.
I do agree that we should keep hyperparathyroidism in mind when we are talking about breast cancer. As you know, I was told by my breast cancer surgeon/endocrinologist that my over active parathyroid disease had preceded the breast cancer and that judging by the non-cancerous adenoma on one of the four parathyroid glands, I had been walking around with it for a long time. I am just glad it was discovered, that I had the surgery, the calcium blood levels reverted to normal almost immediately and I was cured. I feel it was no coincidence that the adenoma was on the lower right parathyroid gland and that my breast cancer was in the right breast. Patients should be aware of this and get any high calcium blood levels checked out. I feel strongly that the parathyroid should be checked, along with the thyroid, during any routine blood checks.
I do agree that the side effects, or possible side effects, from chemotherapy, surgery and radiotherapy should be explained clearly and frankly to breast cancer patients. If this is not done then a patient is not making an informed decision.
Lymphoedema and neuropathy are very common side effects of breast cancer treatment, but, as you say, we can live with them. Lymphoedema can be very serious in some patients as a reading of the lymphoedema threads on here attest. Remember, probably the best book on lymphoedema was and still is no doubt, the one entitled Let's talk lymphoedema. I am lucky that what I have is minor and I make sure to do exercises and to keep the arm well moisturised.
As for neuropathy, again there is no cure, but you need to keep your feet and hands well moisturised.
There is so much information around now that there is no need to be an uninformed patient.
I can understand people being afraid of Covid but if a person has concerns about possible breast cancer, or any cancer for that matter, they need to get it checked as quickly as possible.
I do hope that June 21st will bring good news, but I do have my doubts. We have a terrible press and they always seem to be misleading the public and overdoing things. We seem to have rule by the right wing press. There is too much boating going on and not enough humility.
I think we all feel better when there is a little sunshine. It is also good to see nature coming alive again.
The thread has gone very quiet again and I am really wondering where Jags56 is. I hope she is alright.
Take care and have a good weekend.
Love and best wishes.
Sylvia xxxx
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Hello Gill and Sylvia,
Gill is right on Malaysia's healthcare system. As it is subsidized, the government hospitals are always full of people and you have to go through a tedious procedure and wait for hours to get treated. Some government hospitals, for instant, the one nearest to my house, is a university hospital and they have many medical students practicing there so patients are mostly treated by them, of course they will report all cases back to the leading doctors. My first biopsy was done by medical student and it certainly was not a good experience. On the other hand, medical insurance becomes a trend or necessity since, i don't' know, maybe around 20-30 years ago. People who have bought insurance will mostly seek treatment from private hospitals, unless the insurance is not enough to cover, like my case now. My insurance policy was a bit 'outdated', it covers only around MYR120k for medical claims. I heard that nowadays the insured value is ranging from MYR500k to 1 million.
Last Friday, I went to another private hospital which offers welfare fund to cancer patients. The oncologist, though agreed on the treatments given by my oncologist, has given a different regimen. He proposed EC instead of AC, Paclitaxel to change to a better drug in which I didn't get the name. 17 Herceptin, but no radiotherapy. The treatment cost is so much more affordable than the first hospital (which is a branded hospital I would say, but I did not choose it because it is branded, but because of the breast surgeon recommended to me. She was a famous breast surgeon but I was somehow disappointed that she did not insist on biopsy after first ultrasound on my new tumour). It is almost 40% cheaper, and if my insurance is not enough to cover, they will put me on their welfare fund in which the Herceptin will be subsidized. They are quite transparent on their treatment cost, in which they told me a quotation will be prepared for me. Once I get the quotation I would be able to know the drug name. This oncologist also suggest that I use 4 cycles of generic Herceptin and the rest Herceptin injection (as I know most hospitals here are using the IV infusion type). Regarding chemo port, this oncologist suggests PICC instead. He prefers to start chemo only after my wound heals more, to avoid complications or infections. The hospital is not very big but they focus more on cancer treatment. They provide meals in chemo daycare so patients don't need to prepare own food to hospital. There is also a lady who will be my contact person in future, all queries or doubts will go to her and she will sort them out for me. My husband and I are happy on their service.
I have also asked for a quotation from the first hospital. Will then compare the two quotations. Since both regimen are not the same, I'm troubled by this, not sure how to compare which regimen is better.
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Hello cocolala,
Thank you for your latest post.
I do not envy you having to go through all that bureaucracy to get your treatment arranged. It is not what you need. Lots of luck!
I would not worry if I were you about EC and AC. E means epirubicin (Ellence) and A means doxorubicin (Adriamycin). They belong to the same group. When I was diagnosed epirubicin seemed to be more common in the UK and doxorubicin in the US. They are familiarly known as the Red Devil because they make your urine red.
My oncologist told me that she had chosen epirubicin because it was less harmful on the heart. I do not know whether that is true. I think chemotherapy in general tends to affect the heart.
I would be interested to know what better drug is, the name of which you have not been given. If you are kept on another taxane drug than paclitaxel (Taxol) it must be, I would think, docetaxel (Taxotere). I think carboplatin is used quite a lot now.
As for Herceptin, that is the brand name of the drug, which is trastuzumab, a monoclonal antibody.
What is a "branded hospital"?
I am sure you will be fine with a PICC line.
It makes sense to let your wound heal before you have any chemotherapy.
I remember that when I had six months of chemotherapy I had about four weeks of recovery before having my surgery and then that was given time to heal before I had any radiotherapy.
It will be good for you to have a contact person during your treatment and that you will have meals provided.
Try to relax and just get yourself ready physically and mentally for your treatment.
Love and best wishes.
Sylvia xxxx
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Hello Sylvia,
Really quite cold and dull in Norfolk this morning, though plenty of signs that Spring is on its way. I had a look at Exmouth beach webcam over the weekend, there were quite a number of people out walking by the sea. As so many people are holidaying locally this Summer I think you'll have to prepare for packed beaches after June 21st - assuming the big day ever arrives. We now have people arriving at our airports from countries that have the Brazilian variant. We have also lost someone who tested positive to the variant but didn't give his name and address!
I have to do battle with the breast screening service once more. On Friday I received a letter informing me that I had ignored an invitation for my mammogram ( I hadn't) and would I make another appointment. In the last six months I've been contacted to tell me that My mammogram was clear, though I hadn't been screened. In September, when I was due to be screened prior to my annual check up with the breast surgeon, I was told that I couldn't have a mammogram unless my GP referred me to the breast clinic. I was assured, after the intervention of my breast support nurse, that this had all been sorted out. What a complete mess the screening service is in. I'm afraid that the whole thing has brought back some very bad memories. It doesn't seem to take much to make the fears resurface.
Well on that unhappy note I'd better go.
Keep well Sylvia,
Love,
Gill xxx
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Hello cocolala,
I'm so sorry that you're having to organise your treatment for yourself. It sounds very complicated and must be adding a lot of extra stress at a time when you least need it. I was very surprised that medical students are allowed to perform breast biopsies as it's such a specialised field. Even doctors with years of experience make mistakes and miss things. I would imagine a biopsy done by unskilled hands could be fairly painful too.
I wouldn't be at all concerned that EC may be administered rather than AC. My treatment in 1918/1919 was FEC , (the F is Fluorouracil which isn't used so much now), followed by 3 cycles of Docetaxoel. EC is a good strong treatment. I'd be interested to know which drug is replacing Paclitaxel. As for the radiotherapy, I was advised by my breast surgeon that radiotherapy is no longer considered necessary for mastectomy patients with clear lymph nodes. I was greatly relieved as I wasn't keen on having radiation on the same side as my heart. Hope this information will be of some use to you.
PICC lines are so simple and painless to install and remove. The only down side is that they need to be flushed once a week and of course, you'll need to keep it dry. This all sounds very positive, you just need to decide which regimen and balance this against cost. Not that easy I know. In the UK our NHS, free at source healthcare is just as good as private health care. The surroundings of private hospitals are more attractive, the food is better and surgery waiting times are much shorter. The abilities, skills and experience of staff are the same.
Let us know what you decide.
You'll get through this .
Love,
Gill xxx
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Hello Gill,
I think you are right about what is going to happen in Exmouth during the summer. We do not go to the seafront any more. We are pretty disgusted with the lack of care of visitors to the seafront. They leave litter everywhere.
I am not even sure about June 21st. I shall believe it when I see it.
I was interested in what you had to say about the breast screening service. Raymond and I have been going through the same problem with his appointment for a pacemaker check up. He is supposed to have one every year. He had one on February 14th last year when he had his surgery. He was sent another appointment almost straight-away after this. He got in touch and said he would not me coming to the hospital while Covid was around and that he was not due for one. They still kept sending. Recently I took a phone call from the hospital and was told that Raymond had missed his three-monthly pacemaker appointment! I informed them that we had not received a letter or phone call about any such appointment. I was then told he was due for an appointment on March 1st. This was a couple of days before. I said we had not received any paperwork and he would not be coming because of Covid! Yesterday someone from the hospital phoned in reply to a letter we sent about the muddle with appointments. Raymond and I both spoke to the person. The upshot of that was we were told that a "new system" was put in place called My Care and it was all computer generated. I was told it was there to unite the system. It is obviously not working and is probably worse. Someone I know who was recently admitted seriously ill to the hospital told me about the new system. It is some kind of computerised machine into which nurses, for example, put in a card and out comes information. The person I know, a retired nurse, said My Care equals No Care!
I think the NHS has become too big, too bureaucratic and has been overwhelmed by an over-populated country and, it would seem, a very unhealthy one. This is not what the 1948 NHS was created for.
I see that, once again, we are getting a lot of views but not posts. It is not very encouraging.
I think that we are all so fed up with the restricted lives we are living. I can see no end to the coronavirus and that we are going to have to live with it.
Let us hope that we shall hear from the rest of the group. I would be very interested to hear from some fellow Brits to find out how they are faring as cancer patients in the present situation.
That is about all for today.
Love and best wishes. Keep safe, avoid the system and save your sanity!
Sylvia xxxx
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Hello Sylvia,
I read this thread as I am in the UK, but not TNBC so I wasn't sure about posting. There seems to be a thread for every other potential large Commonwealth nationality except the UK! I know there are plenty of other UK-based forums for cancer/breast cancer but this one is more up to date. Was there ever a UK subforum on this site?
In regards to your last question about overall care - I moved out of the NHS and into private last summer as there were too many miscommunications about my care and it was impossible to talk to an oncologist - I always got the registrars and always different ones and it kept swinging from every month to every other month check ins, always 2 hours late, always about a 5 minute or less call. They also stopped denosumab injections because they required accessing the chemo ward, which was above the floors where they put a bunch of covid patients (no, I don't get the logic either). I know they were trying to do their best but I really felt hung out to dry and it bothered me enough to switch facilities and care provider.
I recently received a letter from my former hospital FOUR MONTHS after I switched, stating I had switched. It was postmarked last week, but the letter itself was dated early November. My prior scans and diagnostics are still locked up over there as well and they have declined access requests for the last three months, and while that isnt a major issue, it would be good to compare the baseline to now. I understand the Covid pressures, though you do wonder just why the IT systems are so bad that this information cannot be sent or accessed easily.
Unfortunately I think all the National Covid Service aspect will be forgotten in a blare of vaccine success stories and pictures all summer long of people getting completely blotto outside pubs and more stories of "beating the Europeans". Nurses were just offered a 1% pay rise, which is stupid even before the coming inflation (which will be used to inflate the debt away while moving more people more quickly into higher tax paying brackets). But Johnson/Tories won't care - those success images will be used to push for an early election, with Brexit and paying for this mess quickly stuffed into the closet.
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Hello SondraF,
I was delighted to see your post and very interested in what you had to say. You are quite welcome to stay here as a fellow Brit even though you do not have breast cancer with triple negative tumour receptor status. In these strange times, where all medical attention is being given to Covid-19 patients, it is very important to hear from those going through treatment with breast cancer and to know how they are faring. The bc.org forum is very large, but I do not think there is a thread that is dedicated to UK residents with hormonal tumour receptor status. I started this thread for people with triple negative status because at the time I thought that triple negative breast cancer was in the Dark Ages. It so happened that not only Brits started posting but people from other countries as well. I went through treatment starting in 2005 and I started the thread in 2010 because I wanted to give something back and to help people. I welcome anyone who wants to post here and will do all I can to help.
I read all that you have been going through with the NHS and I am not surprised that you have gone private. I have heard this from other people that I know. I do not know how the great backlog of cancer patients needing treatment etc. will catch up. I think that the NHS has got too big and bureaucratic and that it is very disjointed. The left arm does not know what the right arm is doing! My husband and I have both recently had problems with wrong information in our health records and with my husband letters not arriving for appointments. Apparently there is a new system that has been introduced called My Care that is supposed to solve all the disjointed problems, but it seems to be making it worse. I had good treatment when I was diagnosed in 2005 and had really dedicated oncologist and breast cancer surgeon, both female. The My Care system seems to be completely computer generated. A retired nurse friend of mine said it was inefficient and spewing out incorrect information. It can only spew out what has been put into it.
I do hope you will be able to retrieve the paperwork that belongs to you, not the hospital. I discovered that the only way to get any action is to phone to PALS and explain your case. I did this when my husband was in hospital last year and not getting anywhere after three weeks, and there was immediate action when PALS got involved. I have done it recently trying to look after a cousin in hospital in London. PALS took immediate action.
You do not need all this kind of hassle when you are going through cancer treatment.
I was looking at the details of your cancer diagnosis and treatment. From my reading it looks as though you were stage IV when you were diagnosed. Is this correct? I do hope this stage IV was not the result of any delay in treatment. I also had IDC and was 6+cms but I had no metastases. How are you doing? Are you still having the same treatment?
I agree with what you say about what is going on in this country with the government. There is too much boasting and arrogance and no admittance of how they failed with Covid from the very beginning. Everything is being politicised. The way the nurses are being treated is shameful. Where are all the thousands of nurses and doctors that Boris promised? The handling of Covid has been a mess, Brexit has been a mess and we are now having a war with the EU and instead of a vote of no confidence in the government, we shall probably get an early election, the people have been conned, and we can look forward to years of austerity.
That is all for now.
Love and best wishes.
Sylvia xxxx
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Hello SondraF,
Agree with everything you say. This is always a hot topic for Sylvia and I. I was forced to have my mastectomy at a private hospital as the NHS waiting list was just too long. I went back to the NHS for chemotherapy, but had to fight very hard for it - including paying for a second opinion from a consultant oncologist at the London Cancer Centre. Oncologist appointments were rare. The only notes I saw were wrong .
The appalling mismanagement of the pandemic will be forgotten and Johnson will be remembered as the man who 'got jabs done', or some other catchy three word slogan that's likely to appeal to Daily Mail readers. The miserly 1% pay rise offered to nurses is a disgrace. These are the men and women who have risked their lives working with inadequate PPE, and unbelievably were not put at the front of the queue for vaccinations. Yesterday evening I attended a Mass and vigil.The coffin of a well respected and much loved nurse lay in front of the altar, her funeral was held this morning. She contracted Covid whilst working on a ward with Covid patients. She was, apparently worth just 1%. The private contract for track and trace cost the taxpayer 22bn.
Gill x
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Hello Sylvia,
The very expensive IT systems set up in NHS hospitals is a nightmare. I don't know if it's too complicated. Health workers were never meant to be IT experts. I can't explain why the wrong information is being added to medical records though. I did eventually get through to the breast screening service. Apparently the department hadn't been informed that my mammograms were the responsibility of those treating me for breast cancer for at least the next five. This doesn't explain why the screening service said that I hadn't responded to the last invitation (when there wasn't one) or why I'd been sent a letter informing me that my recent screening was negative for breast cancer when I hadn't been for a mammogram. I felt that this was an argument that I wasn't going to win, so for the sake of my mental health I gave up.
NHS staff are gearing up for a strike. Who can blame them? Of course the 'lefty' unions will be pilloried in the popular press. I doubt very much that essential staff will strike as they have too much compassion and are committed to their patients. Johnson knows this and so feels free to treat them with contempt. Whilst not being a Conservative voter, I do spare a thought for those genuine long serving MPs who where thrown out of the Party and are now looking on with horror at what it has become.
The metaplastic breast cancer thread which is extremely short of posters had two very recently diagnosed patients calling in last week. Both are triple negative and treatment for them remains the same as for other triple negative breast cancer patients. Nothing new has appeared on the horizon and research ranges between slow and non existent at present.
The Weather here is dull and cold and it looks as though next week will be more of the same. Hope it's at least warmer in Exmouth.
Have a peaceful weekend both of you.
Love,
Gill xxx
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Hello Gill and Sylvia,
What I meant by 'branded hospital' is very high end hospital, with nice environment and higher charges. Just like 'Versace' compare to 'Coach' haha. Sorry, that's just the Malaysian way of saying haha.
Regarding my past biospy experience in university hospital, if that guy is not a medical student then he should be a graduates doing housemanship. He definitely took much longer time when performing biopsy comparing to my recent experience in private hospital.
It turned out that the better drug than Paclitaxel that the second hospital suggested is Paxus. I googled and it's the generic of Paclitaxel with less toxic. However, the quotation that was given to me is so much different from what the oncologist told me. They quoted only Paxus + Zuhera and the cost is even higher than the 8 cycles chemo + Herceptin that I was told during consultation. Surprisingly first 4 cycles of chemo are removed, and when i queried, they said because using Paxus you don't need AC or EC anymore. I told them I wouldn't want a cut in treatment because of the financial issue. I was disappointed and lost confidence with this oncologist, because if using Paxus won't need AC/ EC anymore, why didn't he say so during the consultation? The 'contact person' tried to comfort me and she's checking with the oncologist on this.
I consulted my aunt's friend who is an oncologist in another state, he does not agree with this Paxus regimen without AC/ EC because I was treated with Docetaxel before and Paxus/ Paclitaxel is in the same family group.
Monday I will meet my existing oncologist as scheduled two weeks ago, to discuss on the cost, but I'm not going to do blood test first since I haven't decide whether or not to do treatment there. Hopefully there will be a solution and I don't need to switch to other hospital.
Gill, you mentioned FEC, actually I saw in a Malaysian Facebook group some patients are still being treated with this. About having radiotherapy, my oncologist said it's an extra step of preventive measure, as cancer cells still can travel from skin and blood vessels of the mastectomy site. My affected breast is on the left as well. If I were to go through radiotherapy it would be another burden to my heart on top of Herceptin. As I had a Patent ductus arteriosus (PDA) when I was small, oncologist said they will have to monitor my heart function closely.
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Hello Sylvia, Gill and all here
I cannot believe it's been almost a month since I have been here posting, the time has flown by as usual. The last time I posted I had had my 1st Pfizer vaccine, it wasn't bad till a week later I came down with a dreadful head cold, I suppose that's what it was. It was with me a week or so, then I had a week of fatigue, followed by a week of feeling better but still with a runny nose. Then I had the 2nd dose of vaccine March 1, and now I fear the allergy season is upon me as well, my complaints never seem to end right?
Our extreme cold turned to snowmelt and rapid thawing as the weather warmed quickly, and we had a muddy mess until now, things have dried up. I noted in my back-reading that HelenLouise says that the Covid Variants are hitting Australia, is this all ever going to end? Perhaps not.
I see that Gill has celebrated her 66th birthday, and you, Sylvia, have celebrated another cancerversary. Congratulations to you both. I also see that we have BC patients, cocalola, Sondra and Elzie who are all going through treatment. And, of course, HelenLouise who soldiers on through treatments. I don't have much to report in this vein, except to offer my support. And COCALOLA, I did have a chemo port and it was very helpful for me. One gets used to its' presence quickly, and it worked perfectly and never got clogged. I asked for it to be removed after 2 years had passed, and the surgeon did that. I was surprised to learn that the body does grow rather a tight web around it, and it took another small surgery to remove it.
Around here there are many dinners this month for Lent, with the benefits going to Relay for Life with proceeds going to BC research, they are Friday fish meals which are served in a drive-thru method. I haven't been to one because the fish is only deep-fried, and the side dishes are not healthy either. Dealing with Covid has made us all a little crazy, I think. When I go to town some places are requiring masks and distance, and other places are business as normal. It all makes me glad I have my vaccines finished, but then, the "experts" warn that the variants are coming!
My newspaper tells me that the UK and the US are doing well with Vaccine distribution after a slow start, and the EU is lagging behind. I am not sure about all that, I know a lot of people who are refusing to sign up for a vaccine, they are talking about one or another theory that the government is trying to kill us all, or implant chips or so forth. I was reassured by reading reports about the RDNA technology being studied for the last 20 years for some of the earlier Coronavirus outbreaks, and only really ramping up when then-President Trump helped clear the morass of regulations that are usually required to produce a vaccine. I also read that the AstraZeneca is based on the more traditional way of making vaccines, as is the new Johnson and Johnson vaccine.
Have you heard the news about the antacid drug Zantac being taken out of production, and that it is suspected to have been implicated in cases of cancer, especially and including, Breast Cancer? I am now getting online messages about joining class-action lawsuits against the makers of Zantac. I did take it for a while many years ago, for some acid reflux. Who knows, perhaps it added to the list of reasons I developed BC, I do think cancer is probably caused by multiple factors.
Sylvia, I bought a blood-pressure monitor years ago for my husband's use, and I still use it once in a while. Hopefully it's accurate, but I don't know if the doctor's office readings are accurate either. The best method seems to be to take a reading every day at the same time, or 2 times daily, and write it down. Then you can get a good idea of what Raymond's BP is. Sometimes I think it's just Doctors taking the easy road, and prescribing pills which may or may not help the patient, and then following up infrequently. I think it takes a lot of self-monitoring to get a good picture. I have a BP monitor, a thermometer, a PulseOx which checks oxygen levels and pulse that I use sometimes, just to see if things are maintaining. When my husband was alive we used all these things daily.
Gill, I'm sorry that Michael had to get the expensive crowns, they are indeed way overpriced, I have several of them. But I think they are worth it, having dental problems is just awful. It sounds like your mammogram mix-up is enough to make you crazy, I am so sorry it's such a mess. Is there any chance you could get an MRI on breast? They are more expensive but quite a good test, I get one mammogram a year and then an MRI 6 months later. Because I told my MO that my tumor did not show up on the mammogram 2 months before I found said tumor myself. I hope you can get this all sorted out quickly.
I'm off for now, will try to get back here more quickly, with any luck I will feel better.
Love, Mary
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Hello cocolala,
Good description of the difference between high end hospitals and your everyday standard version. The privately funded hospital, where I paid an exorbitant fee for my mastectomy, had a team of award winning chefs and an excellent choice of wine. My husband dined with me in my room and it made a bad situation tolerable.
The question of whether to have radiotherapy after a mastectomy is a difficult one. I wasn't offered it, but I have since read that in the case of metaplastic breast cancer (which is mostly chemotherapy resistant), radiotherapy is advisable. I may have refused it had I been given the choice as I wanted to protect my heart. It's not as straightforward for you since you have concerns about PDA in childhood. I hadn't realised that this could still be a problem as an adult, have you asked your doctor how long the monitoring would go on for after radiotherapy was completed? Could there be permanent and irreversible damage? I would want my heart to be monitored regularly for the five years following treatment. Perhaps I'm being over cautious
Your aunt's oncologist friend has now given you his professional opinion about the Paxus regimen. This is so confusing for you. Assuming that your insurance covers a reasonable chunk of your treatment and you are able to make up any shortfall yourself, it would seem reasonable to go with the advice of the oncologist whose abilities, experience and honesty you trust most. Your aunt's friend may well know the work of the oncologists you've consulted. I know he's in a different state, but it's always worth asking for an off the record opinion - it's what I did. I also asked my oncologist her success rate in treating metaplastic cancer. She didn't mind at all and her results gave me a lot more confidence in her ability.
Sorry I can't be more helpful. Good luck with your appointment .
Love,
Gill xxx
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Hello Gill,
With reference to the NHS I just think that it is getting too big, too bureaucratic, too complicated and too impersonal. We are not people for the NHS, we are just numbers. I do wonder how much longer it is going to survive. There is too much waste as well.
I do think a strike of the medical staff is what is needed. It is the only way the government will be taught a lesson. Their hypocrisy knows no bounds. The nurses should be earning what the politicians are earning and the politicians are not worth the huge salaries they are 'earning', plus expenses and plus all the benefits they get with their restaurants, bars, etc. We would miss nurses if they decided to walk out, but I am sure we do not miss the politicians who do not even come to parliament.
I suppose the metaplastic breast cancer thread will be short on posters since it is so rare. In a way, there are too many forums and threads and I think some of them could be put together. Why not have a thread for all breast cancer patients, with hormonal status and whatever kind of cancer and wherever they are in the world? You could have a similar one that is non-hormonal for any kind of breast cancer and from anywhere in the world. Patients could go through these two threads for the whole of their breast cancer journey.
I think we are all aware that Covid-19 has affected everything. I have never known the triple negative threads so quiet.
On our thread I do wonder what has happened to Mary, adagio, Helenlouise, Kath, Jags56 and many others. I was thinking of adagio last night when Raymond and I were looking at a series about big cities throughout the world. Suddenly, there we were in Vancouver and in front of me Grouse Mountain, Whistler, and Capilano suspension bridge. It took me back to many years ago when we were in Vancouver for a holiday, while living in Canada, and Raymond walked across and back the Capilano bridge. I could not have done it for the world and I was so frightened for Raymond.
It is another cold day here and very, very quiet.
I have read the post from cocolala and I was rather concerned about what she was told about her chemotherapy treatment. There was mention that the better drug than paclitaxel was Paxus plus Zuhera and that Paxus was the generic of paclitaxel. We are always told that paclitaxel is the generic of Taxol, a brand name, and that docetaxel is the generic of Taxotere, a brand name. My question is can you have a generic of a generic? I am going to do a bit of research.
That is about all for today.
Keep safe, keep well and keep hoping that somehow we get a General Election and Boris, Hancock and Gove get the boot. I do not have much confidence in the present Labour Party either. What a mess it all is.
Love and best wishes.
Sylvia xxxx
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Hello cocolala,
I was interested in your last post and what you said about what you were told about the drug that was better than paclitaxel. You might want to look at the following reference that I have just been reading online. It is as follows: http://paxuspm.com/PAXUS-PM-Patient-Information
I started reading it because I was puzzled when you said that Paxus was the generic of paclitaxel.
My information is, and it has been this for years, that paclitaxel is the generic name for the brand name Taxol. It belongs to the group of drugs known as taxanes. The other drug is docetaxel, brand name Taxotere, and is the one I was given as part of my chemotherapy treatment.
If you read up about Paxus PM you will see that it is another brand name for paclitaxel and its full name with the PM means polymeric micelle. Basically it is paclitaxel with a few extra ingredients thrown in.
If you read the reference you will see that it seems to have the same side effects as the other taxanes and side effects that are common to chemotherapy drugs.
I do hope you will be able to sort out the drugs clearly and start your treatment.
I am going to try to research the other drug mentioned, Zuhera, and see what I can find out about not needing AC or EC if you have Paxus PM plus Zuhera. You do not want to start treatment with muddled thoughts and ideas about the drugs being used.
As I explained in a former post, AC or EC plus a taxane drug, whether it is docetaxel or paclitaxel is standard treatment here.
I have to finish now but I shall post more later.
I did very well on EC plus docetaxel (Taxotere).
Take care of yourself.
Love and best wishes.
Sylvia xxxx
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