Calling all triple negative breast cancer patients in the UK
Comments
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Hello everyone,
I am popping in to remind you that it is important to support those going through treatment, even if it is just a line of comfort and encouragement.
Gina and Rhonda are still going through chemotherapy, Gina with Taxotere and Rhonda with Taxol.
As for Kath, she is finishing Taxol tomorrow and then she will be starting radiotherapy on January 30th. Radiotherapy can be very tiring and she needs your support as well ChrisAsh who is waiting to start radiotherapy.
We must not forget Pam who is recovering from a bilateral mastectomy.
Hello Rhonda, have you any news about your genetic testing?
Hello Maggie, have you any news on what is going to happen after being diagnosed with BRCA2?
All of you are in our thoughts and that includes Lamis, Val and 4everStrong.
Today we have a little bit of sunshine in Exmouth but temperatures are still low.
Best wishes.
Sylvia xxxx
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Hi Sylvia,
Thanks for your encouragement. As i am writing this post, i am still lying in a hospital bed, about an hour after my first 80mg of docetaxel. Except for a little pain from IV needle insertion, hastily pushing the pre-med drugs instead of using a digital pump unlike before and quick drowsiness, my infusion was generally fine. Btw, i went to a different hospital than when I had my FEC because it offers a cheaper drug price due to my MO's discount privilege. This was the same hospital where i had my MX.
My DH had a little argument with the resident doctor before chemo started because we insisted that i should ice my hands and feet against my MO's advice. The resident doc however obliged to our wish upon informing my MO who reluctantly approved it. I was also given a Polynerv 500mg tablet, which is basically B1,6 & 12 to take right after my chemo and onwards on a daily basis to prevent neuropathy. These docs dont believe Docetaxel will cause neuropathy and said it is very rare based on their experience. We disagreed!
Ok, I am feeling drowsy again after i had my dinner. I still have to tale calcium and liver supplements before i go to sleep.
Hope all is well with everyone.
Gina
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Hi, Sylvia,
I wish I could say I was feeling all better, but I'm not. Still coughing, sneezing, nose-blowing ugh. I think this is not going to go away quickly. Now we have a forecast for a winter storm this weekend, with the strong possiblity of ice storm. These are horrible events which happen every so often. People lose their electricity, sometimes for days on end, impossible to travel. So I am sure the grocery stores are busy as people stock up. My husband installed a generator after the last time we had one of these, so hopefully I will be able to retain power, since it's also going to be very cold. Many of my neighbors also got generators after the last big storm.
I found Chris Woollams in my mailbox too, as usual in the wrong place, so thanks for reminding me. I wish they would not have changed the print size, I could read it much easier before. I started on the section on exercise, haven't finished it yet, a lot of info there.
I read somewhere that you are a Virgo, or am I dreaming? I am a Virgo as well. My birthday is September 5. I am not a very good Virgo, I am a bit messy and unorganized. But I think many Virgos have a great interest in things relating to health and medicine. I have a male friend who is also Virgo, who is much the same, we usually find ourselves talking about matters of health and what to do about it, he is also very neat and tidy and an immaculate dresser. I have 2 Virgo friends who are teachers, both now retired.
I did notice the article you posted about, have not got to that yet either. This bug has really got me down. I have had to go out a few times to deal with some things, and when I return I cough and deal with nose-blowing for hours, it's awful. Right now it would be really nice to have someone to take care of things, but I guess I will have to manage.
I shall talk to you soon, dear Sylvia,
Mary
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Hi, Gina,
I am so glad you are insisting on trying to prevent the neuropathy, my MO also downplayed the possibility of me getting it, and then when I told him I had it after the first Taxotere, he said "Oh, but it will go away after treatment." At that point I started with the ice gel slippers, but the damage was already done. I have told you this before, it just makes me sad that he was so uninformed. I have read statistics saying that it's possible 40% of people taking these drugs, plus others that cause nerve damage, will get some degree of neuropathy.
It sounds like you are taking very good care of yourself, good luck with everything.
Talk to you soon, Mary
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Hi Maggie,Sylvia and all,
I received my genetic testing results and I am negative r for the entire panel.I asked about the affect of chemo
On DNA and the doctor said since they take the DNA from the lymphocytes it remains unchanged. This is good news and I am relieved for my children.My daughters risk of breast cancer is higher than normal but not the same if
She were BRCA 1.
I agreed to donate my DNA for a study on the significance of BRCA because the doctor is interested in triple negative breast cancer.
Rhonda
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Hi Sylvia, Mary, gmmiph,and all
I'm sorry if I can not keep up with all the posts here but everyone on this thread is in my deep thoughts and prayers. I hope to hear just the best news here. My hands are still crossed for my friend who is waiting for her lab results.
Tonight I have another blessing to make me happy and thankful . In fact, if we all try to count the things we have in life and be thankful for each and every one of them, hardships will have less power on us. Sometimes I think through all the fears and uncertainties of the post diagnosis, my life has given me much more power to enjoy the slightest things in life.
After two months of weighing the options to buy a new car, today I got my car. But it's not Hyundi Accent. It's the new Suzuki vitara. My husband and I decided to buy an SUV for the family which is suitable for travels inside the country, yet not too big for Tehran's heavy traffic. My husband has the company car which he uses for his business transportations. Today was my first time of driving it and it was really exciting.
I thought sharing my good news with my friends can show what is always said: "There is life after cancer."
Love
Hanieh
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gmmiph - good for you and your husband standing up to the doctors. Icing is not going to harm anyone or anything, and if it works, then so much the better - I can't really understand why anyone would make such a fuss about ice. Hope you are feeling better soon so that you can go home and rest.
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Hi adagio,
Thank you for your posts. I missed the previous one yesterday, maybe because i was still drowsy from the meds.
Yes, doctors make mistakes too. There's no way they can stop me from the ice therapy. You're right, there's no harm in doing the cold therapy It is a precaution against neuropathy and as long as it is done properly and not excessively, i think it is ok. I asked the resident doc and she said so herself. She was just insisting that it is not necessary and maybe she's scared of what my MO would say. It's just a minor hassle to an otherwise uneventful day of chemo. Thanks for your support and encouragement. Are you back to work already? I hope you had a nice vacation with your family. There's no place like home.
Hi Hanieh,
Yay to your brand new car. It's always a wonderful feeling to have our dreams come true and they always give us a sense of fulfillment and independence. Enjoy your new car, your life with your loved ones, and here's wishing to a cancer-free life for all of us. Cheers!
Hi Rhonda,
Congratulations for a negative gene tests results. That is a great big news for your family. I hope everything continues to be good for you!
Hi Sylvia and Mary,
Thanks for your supportive posts. I am looking forward to reading more of your interesting post exchanges especially those filled with lots of info and insights to fighting cancer.
Mary, how long is your cough already? Have you considered taking anti-biotic?Virus infections can become bacterial if prolonged for more than a week, right? Please get well soon. Sending prayers for you.
I have packed and is ready to leave the hospital as soon as my MO arrives and gives me the post med prescriptions and further instructions.
Wish you all the best.
Gina
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Hello Gina,
I hope you are now back home, drinking plenty of water, resting and telling yourself that is one more infusion behind you.
I was interested to know that you had gone to a different hospital for your docetaxel to the one where you had your FEC regimen and your mastectomy. I was also interested to know that the hospital where you are now offers a cheaper price because your MO has a discount privilege. It made me wonder about what kind of health service you have in the Philippines. Is it insurance based or are you having to pay?
If you go to different hospitals and see different consultants, what happens about consistency and stability as you start to have regular check ups when you have finished your standard treatment?
I ask all this because when I had my treatment I was in the hands of mainly two people, both women and both excellent. My oncologist dealt with all my chemotherapy treatment and also did everything connected to my radiotherapy, except for actually working the radiotherapy machine.
I was glad to know that you and your husband stood up for yourselves at the hospital. I do not have an opinion about whether to ice or not, because I did not have it. I did ask my oncologist about an ice-cap to try to prevent hair loss during chemotherapy, but she was against it because of the risk of infection.
When I told her later that I had a strange sensation in my feet, she told me immediately that it was neuropathy caused by docetaxel and that there was no cure. I later had the same diagnosis from my GP and later from two podiatrists. They have all said there is no cure. Fortunately the neuropathy has stayed the same over nearly twelve years, is not really bad, just a numbness, which does not bother me much. I think it is important for patients to get that official diagnosis when it comes to neuropathy, just in case it is something else. A podiatrist can do it for you by having you close your eyes and do prodding with a needle into your feet. I have had it done about three times and I feel nothing.
I was told that docetaxel and therefore probably paclitaxel definitely causes neuropathy.
Is it official that B1, 6 & 12 helps prevent neuropathy? I ask this because I took plenty of B vitamins during all of my cancer journey.
Talk soon. Fond thoughts.
Sylvia xxxx
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Hello Mary,
I was sorry to read that you are not feeling any better. This bug seems to last a long time. I was wondering whether a high numbered manuka honey would help. It seems to work very well for all sorts of things. You might try it in some what we call here Lemsips. It is sachets of paracetamol with vitamin C. Raymond took this when he had the bug and it is very soothing and seems to help you to sleep. It is also good just to have a spoonful of manuka and to swallow it slowly. Apart from that I can think of only cough syrup.
I do hope you will be fine during that storm.
It is strange about the Chris Woollams emails. I still have not got them back in mine, but I can follow through Raymond. I am still trying to find the time to sit down and read all the details from the last email. I think we are so lucky to receive all this information. Everything he says is proving to be right. I still have the What Doctors Don't Tell You magazine to go through again in more detail.
Yes, it is true I am a Virgo. My birthday is September 1st and according to what the birth sign says about Virgos I am very typical. It is strange that yours is September 5th, no wonder Gina says that we go together like coffee and cream!! I have always been interested in health and medicine as well as nutrition, but I am interested in all kinds of things and always need to have a book near me.
I am also very neat and tidy and like to dress smartly but simply. I do not like today's fashions at all.
It is strange that you have those Virgo friends who are retired teachers. I think I was very suited to teaching and I was always very thorough with everything I did. I had a very good relationship with my students and quite a fan club. I think this is because I was never aloof with my classes but always expected and got respect.
I do hope this bug will improve. In the meantime, just take it easy and take plenty of fluids. In our complex I seem to be alone in not having had a bug. I also did not have the flu vaccine, unlike most of the people here. About a month ago I took echinacea as a tincture in a drop of water for a couple of weeks as well as astragalus supplements, an immune booster. I cannot say whether there is any connection between those two things and not getting any bugs, but I do believe in them.
Get well, Mary. We are all thinking of you.
Love.
Sylvia xxxx
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Hello Rhonda,
I was so glad to know that your genetic testing results have shown that you are negative.
I was interested to know that you have been told that chemotherapy does not affect the DNA because somewhere recently I have read exactly the opposite that it does affect the DNA. It is hard to know what to believe.
I do hope everything will be fine with your daughter. It is true, so we are told, that there is a higher risk of developing breast cancer if you have a close relative with it, like a mother or sister, but it is just a risk. It does not mean you will develop it.
I was interested to know that you agreed to donate your DNA for a study on the significance of BRCA.
Back in 2005 I also gave a DNA sample to the research nurse at the hospital where I was being treated.
Later, when I had an interview with a genetic nurse I also gave a DNA sample for storage at the hospital. At that interview I was told I would not get a genetic consultation and test because they thought there was no genetic connection given the family history and my age at diagnosis. I do not have children but I have four nieces through two brothers, so that DNA sample will be useful should any of them develop breast cancer.
Keep looking forward, Rhonda. You are nearly at the end of your chemotherapy journey.
Best wishes.
Sylvia xxxx
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Hello Hanieh,
It was nice to hear from you. Thank you for your kind words of support to everyone on the thread. These words are very important as those going through treatment need to know that they are not alone.
I do hope your friend will soon have her results and that the news will be good.
It is good to know that you feel, post-treatment, that the diagnosis of breast cancer has somehow made you more strong and powerful and that you are able to appreciate the small things in life.
I do hope you and your husband will enjoy your new car and that it will bring a lot of happy outings to you and your family. I get the impression that it is not exactly easy driving around Tehran.
Do you have any expeditions outside of Tehran planned?
I agree that there is life after cancer. What we should not forget is that there is a huge amount of cancer around and that there will always be a need for support groups of every description and that we as survivors should always try to support those that need us.
At the moment our NHS is in deep trouble with so many patients to treat and not enough hospitals, doctors, nurses etc. Both patients and doctors need to learn not to abuse the system that was brought in to give everyone access to free treatment at the point of treatment. This does not mean it is free. I think a lot of people forget that it is expensive and has to be paid for through taxation.
It is a really miserable day here in Exmouth. It is pouring down with rain.
I do hope you will stay in touch, Hanieh. To bring you up to date in case you have missed posts, Gina has just started docetaxel. Rhonda is going through chemotherapy with paclitaxel. Kath finishes her paclitaxel today and starts radiotherapy on January 30th. Chris has just finished her weekly paclitaxel and is waiting to start radiotherapy. Pam has had a bilateral mastectomy and is recovering from that. As for Maggie, she is waiting to find out what treatment she will have after being diagnosed with BRCA2.
Sending you very best wishes.
Love.
Sylvia xxxx
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Hello adagio,
I was wondering whether you were still reading the magazine, What Doctors Don't Tell You, and whether you have read the January edition. I have just read page 20 the article New Focus, entitled Chemo's early victims. If you have read it I would like to know what you think. Page 21 shows a picture of all the money being made from certain drugs. It is entitled Making money with chemo – here the top 10 best selling chemotherapy drugs of 2015 and their revenues from the world wide sales. Page 22 has two titles – Chemo's timeline 1907 – 2012. The other is Immunotherapy: the great new hope.
I hope you have settled down nicely after all your adventures.
Fond thoughts.
Sylvia xxxx
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Hello Mary,
Sending you healing thoughts.
Love, Sylvia xxxx
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maryna - so sorry to hear of the bug you have contracted. My husband has had a similar one as you according to your descriptions - he just could not shake it off and it has taken all his energy away. He has had it since December 20th - but I am pleased to say that in the last few days the drainage has decreased and his cough is considerably less. So hopefully this will be the case with you soon.
Take great care of yourself and if I livedcloser, I would happily come by and give you the help that you need
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Hi Mary,
So sorry to hear you caught a bug. I'm sorry for my delay but I hope you feel better by now.
Take care
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Mary, I hope you're better now
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Hi Sylvia,
Thank you for your post. I am back home now. Strangely, i feel normal and do not have any SE from the Docetaxel yet but i read from another thread that it may kick in full force on the third day and onward. I am faithfully taking all my home meds including two tablets of dexameths steroid today as instructed by my MO.
As for the health service here, we have our meager govt. health insurance share for each hospitalization. So meager, it is as good as the price of just one of my regular bloodworks. Sucks. I also pay for my own annual private healthcare insurance but it has already maxed out during my 3 FEC treatments. So I have to pay for the rest of my future treatments starting with the Docetaxel.
My MO is connected with the two hospitals i went to. The first hospital where i had my MX and now my Docetaxel infusion, is where my MO has a medicine discount privilege and that is where i am so grateful to her. The hospital service and procedures including payment however, is not as efficient compared with the second hospital where i got my FEC treatments. I think it is ok to go to two different hospitals as long as I have the same MO and my hospital history/records efficiently transmitted. I decided to make the hospital switch since i already finished FEC, and i was starting on Docetaxel. No disruption there.
Ok, this is all for now. I see that you are tireless in answering posts from our other TN friends here. Keep up the good work and may God bless you.
Hugs,
Gina
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PS Sylvia,
I am not sure whether or not the vitamin B complex (Polynerv 500/once daily starting yesteday) i was given is enough to prevent neuropathy, so i plan to continue with the ice therapy for the remaining infusions. The Vitamin B, as i have read, may help, so it is better than nothing.
My MO and the resident doc downplay the effects of neuropathy and i may not have even been prescribed the Vit B if not for the small argument that we had with the resident doc regarding the icing. Anyway, we got what we wanted. I hope all of these work favorably for me.
Ok, talk to you later.
Gina
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Hi Sylvia and all
Thanks for asking how things are going. I have appointments scheduled for Feb and March to discuss prophylactic surgeries (double mastectomies and ovaries and fallopian tubes). The genetic counsellor was very good and referred me on quickly when I said that I'd want to get everything removed.
However I fear that the mastectomy plan will no longer be prophylactic as I have found a small lump on my other (right) breast.
I have an appointment at the one stop breast clinic next Tuesday. Here they will investigate the lump and determine whether it is a new primary or a concurrent cancer.
I was surprised and disappointed to be told that I would be seen as a new referral and not as an existing patient, I also leared that I wouldn't have the opportunity at this clinic to discuss my situation with someone. I was also told I wouldn't be able to see oncologist until results were back and then only if I had a diagnosis of a new primary cancer would I see her. I was told that I should speak to genetics and/or breast surgeon if I wanted information.
I wasn't too happy so I emailed my breast surgeon and asked if he could just go ahead and book me in without waiting for investigations/results of new lump. In fact I'd said to him I didn't see the point of going to this clinic again because I wouldn't see anyone who would be prepared to deal with my questions at this point in time. He is amazing and kind and he emailed me back offering to see me right after one stop clinic appointment.
I'd thought that intervention would be the same regardless but my breast surgeon has indicated there are different implications in terms of axillary management and planning of the mastectomies depending on the nature of the new lump. So I am so very grateful to him for giving me the earliest opportunity to discuss.
I will let you know next week how my appointment goes. It may turn out that the new lump is not sinister after all.
Thanks all for caring and sharing. It would be great to know if anyone else on this thread has had cancer in both breasts.
Best wishes for everyone going through treatment and recovery
Xx
Maggie
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Hi Sylvia - I have read the two articles you mentioned. I find the chemo one to be quite disturbing because it makes me feel like I made the wrong decision in having chemotherapy. It is alarming if those deaths are in fact occurring - those figures seem very high to me, and how come we do not hear more about those deaths that occur within 30 days of starting treatment? I am of the firm opinion that cancer is an industry - a big money maker for the pharmaceutical companies with very little return for the receivers of these drugs. The page with the amount of money spent on drugs is quite alarming - to be honest, other than Herceptin, I am not familiar with most of the drugs on that list. Herceptin is one drug which I think there might be a lot of success with - in fact, I am not certain that it is considered chemotherapy - I will do a bit of research on this. I know several women who have had Herceptin and seem to be doing well - this drug is usually given for about a year after chemotherapy. It is hard on the heart and one has to have regular heart scans during the treatments.
Immunotherapy is a whole new ball game for me. I have not done much reading at all into this, and have not known anyone personally to have had it. The only person I know of who has had it is a Canadian radio personality - he had it and it was not successful, so he is trying a different drug now. So I have misgivings about it.
Did you read the article on the link between the BRCA gene and prostate cancer - I found this very interesting indeed. This is new research.
Things are very slowly settling down here after our big trip - we have not really had time to process it yet since we got back just prior to Christmas and there have been too many other things going on. We did have a wonderful time though and it was a long enough time away to give us a good idea of the cultures in both Australia and New Zealand.
Next week I see my oncologist - it will have been 9 months since I have seen her - the longest gap ever. I will let you know how it goes.
Our weather in Vancouver is very cold and the streets and roads have had a lot if ice - so it is quite dangerous for walking. I have not been able to do my usual very long walks, but I heard that the rain is coming next week - so happy about that, especially since I love rain.
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Hello Gina,
I was glad to know that you are feeling quite normal after your first infusion of docetaxel.
I should not take much notice of how other patients react to these drugs. We are all different, have bodies that will be in different states of health when we are diagnosed and we do not know how we are going to react to these drugs. Just take the meds that you have been given to take and tell yourself you are going to be fine. As I have said before, I did not suffer during chemotherapy except for fatigue and I mainly did my own thing.
If you think something is going to happen, you can psyche your mind into making it happen.
I was interested in what you said about your meagre government health insurance share. That really needs improving.
It is quite shocking that you are having to pay for your docetaxel treatments, as I know this drug is very expensive.
Where will you have your radiotherapy?
Take care. Fond thoughts.
Sylvia xxxx
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Hello Maggie,
Thank you for your post and for keeping us up to date. I do hope all will go well at your appointments in February and March. All that surgery is certainly a lot to go through.
I was sorry to read that you have found a small lump on your other breast, the right breast. Let us hope that the lump you have found is non malignant, such as a cyst. This is often the case. I suppose they will be doing a mammogram, ultrasound and a biopsy. We shall all be thinking of you. If it is a new primary, I would think they would do the size, stage and grade and test whether the receptors are negative or positive.
The only other possibility is that it has spread from one breast to the other.
Next Tuesday is a long time to wait and I think that waiting to know what is going on is dreadful and stressful.
I cannot believe that the system could treat you as a new referral as common sense dictates that you are an existing patient! I cannot believe sometimes the bureaucracy of the NHS. It makes no sense. I do not like either the bullying side of the NHS and I think that patients have to fight it. The patient should be calling the shots, not the medical staff.
I was so glad to read that you went over the head of all this bureaucracy and contacted your breast cancer surgeon. I do hope you will get satisfaction on Tuesday and that your breast cancer surgeon can be of great help to you.
I do hope, if there is anyone viewing that has had cancer in both breasts, that they will post. Back in 2005 a neighbour of mine had cancer in both breasts and had a double mastectomy but both tumours were hormonal.
Do you think there is much difference between the health service in Scotland and the one in England?
Keep strong and optimistic and let us know how things go.
Please feel free to post about anything that is worrying you and we shall try to help.
Fond thoughts.
Sylvia xxxx
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Hello adagio,
Thank you for your interesting post. I was glad to know that you are still reading the magazine What Doctors Don't Tell You. I think it is one of the best magazines and a good way of keeping up-to-date about everything medical. I would recommend everyone who wants to be informed to read either the magazine or subscribe on line at www.wddty.com. On the cover of the magazine it says Helping you make better health choices. It also says Best and most popular health website of the year.
I agree with you that the one about chemotherapy is quite disturbing. I do not think you should worry about whether you made the wrong decision in having chemotherapy. You had it, I had it, and most of us had it, and we have all lived and got back to a normal life. Despite the toxicity of the treatment, I do not think we would be alive today without it. You will remember that it took me quite a while to make up my mind about orthodox treatment and that was after seeing a breast cancer consultant in homoeopathy at a hospital and an alternative nutritionist doctor, a well known one. Both told me that I should have the orthodox treatment and use them as an adjunct.
I have recently read that 90% of patients with primary breast cancer survive their treatment and I would think that the remaining 10% are probably made up of those with metastases or with rarer types of breast cancer, whatever the receptor status.
In the article, when these deaths are mentioned, they do not say what types of cancer are causing the deaths, and how advanced the cancer is when the chemotherapy is started. The older you are I would think the more unlikely you are to be able to withstand chemotherapy drugs. In fact, hospitals, I would think, are less likely to want to give you chemotherapy treatment. We have to remember that one of the worst side effects is this drop in white blood cells. I think this is most likely the older you are. Fortunately, we have Neupogen and Neulasta injections to help with this now.
We have done our treatment, are living normally, so all we do is keep calm and carry on. This is what I do. I remember one of the Registrars to my oncologist telling me that they did have fatalities during chemotherapy! I thought at the time it was not exactly reassuring!!
Cancers such as lung and pancreatic are among the worst. It does say in the article that it is 8% for lung cancer patients and the average for breast cancer is 2%.
I certainly agree with you about cancer being a big industry, and a big money maker. I also think it is very political.
As for page 21, with the diagram of the hypodermic syringes pointing to money made, I believe it. Just looking at number 3, Herceptin (trastuzumab) which is used for HER2+ breast cancer, the sum of $6.59 billion is unbelievable. I remember the big fight from patients and the court cases here to get it back in 2005. It does not always work. My friend and neighbour had it for HER2+ after she had finished standard chemotherapy, surgery and radiotherapy. She went in the clear but it came back quite quickly and she had more Herceptin and all kinds of other new drugs, but she died.
I am going to have to take a break now, but I shall continue latter when I can, as I want to discuss the other part of the article on page 22, Immunotherapy: the great new hope.
Talk to you later.
Love.
Sylvia xxxx
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Hi Sylvia,
Thank you for your post. Just to update you, this is Day 3 after my first Docetaxel and i am beginning to feel the fatigue and some pains on my lower spine, hips and knees. I am not happy about this but at least i know now that the Doce is working.
In our country, there's so many things that need improvement not only the health insurance. To me, Corruption is the number 1 problem the weak political will and the people's lack of concern and poor education. In my opinion, not so many people are aware of the rampant corruption going on because they dont have much access to the necessary info and they dont care. They dont know exactly how funds are utilized and some politicians are very discreet about their evil activities using dummies and mistresses to stash away people's tax money and avoid detection. Partisan politics are also messing up the already dire economy. There's so much personal political bickerings and the more important issues are being neglected. People should really be more aware of how important their election votes are for the country's sake.
As for my radiotherapy, i asked my MO and she told me the criteria for it is that my previous biopsy report should have a tumor size at least 4 cm in size and/or 4 positive lymph nodes. I only have 2.5 cm tumor and 1 positive out of 14 nodes taken out. So, i wont have radiotherapy. I am very happy about it but at the same time, i wonder if that is really the standard criteria for radiotherapy.
Ok, this is all for now. Hello to all, regards.
Gina
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Hello everyone
I thought you might like to read a poem that a friend of mine wrote just before Christmas. He has written another one that I shall post later.
Best wishes
Sylvia
HELP AND CARE
THIS IS THE LAST MONTH OF THE YEAR
WHICH IS FULL OF CHRISTMAS CHEER
BUT PEOPLE LIVE OUT ON THE STREET
WITH NOTHING THAT WILL GIVE THEM HEAT
SO AS THEY HUDDLE IN THE RAIN
SOME OF THEM DO SUFFER PAIN
BUT THEY STILL REMAIN OUT THERE
EVEN THOUGH THEY NEED HELP AND CARE
SO EACH CHRISTMAS WE ARE ABLE
TO SIT AROUND A FAMILY TABLE
BUT THE PEOPLE WHO LIVE OUT THERE
HAVE NO ONE TO GIVE THEM HELP AND CARE
WE ALSO HAVE OUR FOOD AND DRINK
SO BEFORE YOU EAT JUST STOP AND THINK
ABOUT THE PEOPLE WHO LIVE OUT THERE
TOO PROUD TO ASK FOR HELP AND CARE
SO PLEASE TRY AND TAKE SOME TIME
AND THINK ABOUT THIS LITTLE RHYME
ABOUT THE PEOPLE STILL OUT THERE
WHO REALLY NEED SOME HELP AND CARE
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Hello everyone again,
This is the second little pom written by a friend of mine, who loves to make up verses of all kinds.
I think these lines should teach us how to count our blessings and be thankful for what we have.
Thinking of you all and sending best wishes to lamis in the UK. We have not forgotten you and I am wondering how your mother is getting on.
Best wishes also to Val and 4everStrong. We have not forgotten you but are just concentrating on those going through treatment. I hope all is well with my compatriots from whom we have not heard in a while, AmandaD, Barbed, Tom, PeterandLiz and Michael in Northern Ireland.
I hope everybody is making the best of their weekend.
Sylvia xxxx
HELP AND CARE JANUARY 2017
NOW IT'S THE START OF A NEW YEAR
AND WE'VE HAD CHRISTMAS FULL OF CHEER
BUT PEOPLE WHO LIVE ON THE STREET
THEY DID NOT GET CLOTHES, FOOD AND HEAT
SO AS WE SAT TO HAVE A DRINK
HOW MANY TOOK THE TIME TO THINK
ABOUT THE PEOPLE STILL OUT THERE
WHO REALLY NEEDED HELP AND CARE
FOR THOSE OF YOU WHO READ THIS
THINK ABOUT YOUR LIFE OF BLISS
FAMILY AND FRIENDS DON'T LIVE OT THERE
SO THEY DO NOT NEED YOUR HELP OR CARE
AND AS WE GO THROUGH THIS YEAR
THINK ABOUT THE PEOPLE'S FEAR
BECAUSE THEY DO REMAIN OUT THERE
AND THEY STILL NEED HELP AND CARE
IF NOTHING ELSE SIT DOWN AND HOPE
THAT THESE PEOPLE CARRY ON AND COPE
BECAUSE A FEW STILL LIVE OUT THERE
BUT ONLY SOME GET HELP OR CARE
SO I THANK YOU FOR YOUR TIME
JUST TO READ THIS LITTLE RHYME
NOW THINK ABOUT THOSE FOLKS OUT THERE
WHO REALLY NEED SOME HELP AND CARE
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Hello, Sylvia, and all,
I finally got to the WDDTY article on chemo lethality early-on, it doesn't surprise me. Reading the timeline on the development of the chemo drugs is a real eye-opener, anyone who thinks Ty Bollinger is a charlatan and chemo is our only hope should have a look at this. I had heard before about mustard gas being the genesis of much of this, scary stuff. But you are right, we all used the drugs, we have survived thus far, I was interested to read that some researchers think that first-time drug receivers and older patients should be more closely monitored in the first 30 days. I am one of the people who was hospitalized after my first dose of triple-drug chemo. It was the 8th day after treatment, I got out of bed and saw my husband off to work, but felt very weak. I laid down and took my temperature, it was 102.5. I called the doc and was told to go to the hospital. My friend took me there, and I don't remember much until about 24 hours later. I opened my eyes but couldnt keep them open till later that night. I have never been so weak., more so after the copious diarrhea that occured later. I was a vigorous person going into this, although somewhat weakened by my mastectomy surgery. I can see how a weak, ill person could easily have died. In fact, I had 2 close friends diagnosed with late-stage cancer, who died well within the 30-day window of chemo treatment; both at the age of 60.
The new immunotherapy drugs will not be perfect either, I really don't know what to say about them, I still feel as you do, prevention is the thing, if we only knew what to protect ourselves from. Other than everything!
I do feel a bit better though still with a stuffy head. We have endured almost 24 hours of freezing rain, with a chance of more today, everything is coated with clear ice. Tomorrow it is supposed to warm above freezing, and we will start thawing. I have a police scanner in my house, it reports county-wide distress calls. I have the utmost respect for the first responders, the ambulance workers, the police and the road workers, who have had to be out with every call for help. I heard that one of my neighbors had to be taken 30 miles to the hospital last night with a heart attack. She survived and is now undergoing tests. Last night was quite eerie; though I live rurally I can see the road and the traffic going by. Yesterday into late night there was nothing moving, and no sound outside except the falling ice. I felt quite marooned!
I shall talk to you later,
Love, Mary
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Hi, Adagio,
Sorry to hear your husband has also had this bug, and since Dec. 20th, that's a long time. He must have become ill right after you returned from your trip? Yes, it really zaps one's energy, along with all the other miserable symptoms. Hope he recovers soon! For myself, I feel a bit better. It probably helped to have a weather-forced day inside yesterday, boring as it is! Thanks for offering to nurse me through, I appreciate the thought!
Talk to you soon, Mary
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Hello, Gina,
Glad you are doing well with the docetaxel treatments, I thought the drug quite tolerable when given alone and not with other drugs. Except for the resulting neuropathy, of course, in my case. It's so amazing we all have such different methods of health-care delivery, they all seem like they could be much more efficient. You are doing a very good job of sticking up for yourself, keep it up.
I did not have radiation either, and I was glad at the time. Later I wondered if that had been a mistake, but who knows?
I hope you continue feeling not too bad through the rest of your treatments.
May I ask a question, I was looking at your history. Says you were diagnosed in Feb. 2016 but had no surgery or treatment for 7 months. What was the reason given for the delay? If you have already spoken to that here, I must have missed it.
God bless, Gina! Mary
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