Calling all triple negative breast cancer patients in the UK
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Sylvia,
I am back to Chris Woollams. In the next article he is again stressing the Rainbow Diet, which if any here don't know, is very similar to Mediterranean Diet. Lots of vegetables, nuts, seeds, oily fish (be careful of mercury!), lean meats, good oils, (olive), some fruit. The fresher the better. I also like coconut oil, grapeseed oil. Chris says he had to take research down from his site at one point because it stated that the Diet was better at preventing heart attacks and type-2 diabetes than the Doctors recommendations. The research data has since been put back up.
Next he tackles the subject of osteoporosis. A good subject, I know a few women who are in osteopenia (precursor to osteoporosis), after their chemotherapy. They are all being treated with the drugs on the market, which are known to have possible unpleasant side effects. The problem with making new bone seems to arise in the gut, as well as in the bone marrow. It seems that Vitamin K2 is very important in the production of new bone. This vitamin is manufactured in our gut, that is if the gut is healthy with a good bacteria level. Magnesium is also important, and the absorption of that is lessened by cows' dairy. Chris names 6 steps for maintaining bone strength.
1. Avoid cows' dairy.
2.Eat more leafy greens.
3.Go in the sunshine every day and supplement with 2000 mg. Vitamin D when you cannot. (I take D3)
4. Eat magnesium-rich foods every day (nuts, seeds, vegetables, and whole grains) or supplement. (Alcohol depletes magnesium levels.)
5. Maintain a healthy gut. Take a daily probiotic and try to eat more live foods.
6.Try some light weight-bearing exercise, but this can be a problem, especially if you have brittle bones!
(I would like to add that I puzzled over the exclusion of cows' dairy, and then learned that it seems to be mainly because of the growth hormones and saturated fats that it contains. So I personally wonder if dairy is okay if it is soy, or organic goat, or from organic, grass-fed drug-free cows? Haven't seen that brought up, although I know that you, Sylvia, eat soy yogurt.)
There is one more article, his theory that inflammation in the body is the precursor of every illness. I am going to try to link to it, since it is interesting but rather long.
Hope it is a good day in the UK! And everywhere actually. We have had a return of hot weather this week, but that will change with lots of rain coming and then cooler.
Talk to you soon, Mary
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Hi, all,
This is the article from Chris Woollams on inflammation being a precursor to illness.
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Hi, Pam,
It sounds like you are getting through your treatments quite well, good for you for keeping up with eating and being so positive. It's also good that you haven't needed the Neulasta yet, the blood counts should get low, but not so low that you are incapacitated. I was treated 2 1/2 years ago, Carboplatin was never mentioned, nor was I given all the numbers and marker information that seems to be given now. I hope all these advancements have positive results for everyone.
You mentioned getting nauseous, do you take the anti-nausea pill Zofran? I did take it and was never nauseous, but did get very constipated from it. Not sure which is worse!
Just wanted to say hi and wish you the best as you go through treatment!
Talk soon, Mary
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Hello Hanieh,
Thank you for your post. I do hope you will have a good break from your work and that you can return relaxed and ready to go forward with your life.
I was very interested to know that on September 15th you are going to Russia for a week. It is a country I have never visited but it is one that I would have liked to visit when I was much younger. Be sure to post lots of pictures and tell us about your experiences.
Take care and enjoy every day.
Love.
Sylvia xxxx
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Hello Pam,
Thank you for your post. It is important to flush the drugs out, especially during those first few days, but keep hydrated all the time. If you do not always feel like drinking water, I have discovered that pure coconut water is very good for hydrating the body and it is full of important electrolytes.
It is good that you have not needed any Neupogen shots.
It is also good that you and Chris can compare notes about Carboplatin and Taxol. Have you been told what the added benefit of Carboplatin are? Is it anything to do with the fact that your type of cancer is medullary? I am not sure whether Chris has the same type of breast cancer but I am sure she will let us know.
I was glad to know that mashed potato might help during treatment. I would think that baked potato would be useful as well.
Keep in touch and let us know how your next treatment goes on September 20th.
Fond thoughts.
Sylvia xxxx
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Hello Michael,
It was nice to hear from you again. Thank you for posting links 24, 25 & 26. I shall have a look at them over the next few days.
I do hope all is well with you and that you have had a good summer. Please stay in touch.
Best wishes.
Sylvia
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Hello Mary,
Thank you for your posts. With reference to the latest email from Chris Woollams and article 1, I also decided that I was not going to let glutamine, glutamate worry me! There is so much information in his emails that we have to make choices.
I did not pay much notice to number 2 and number 3 either. Regarding number 4, Exercise is always great for you. I do think exercise is very important but I think walking is sufficient and I do not think you have to overdo it.
I think we all believe in the rainbow diet on this thread, but I am now somewhat concerned about eating fish in general, because of how contaminated the rivers and oceans are. There is not only the problem of mercury but now the news is all about plastic beads in toiletries that is appearing in the fish. My main source of fish, like yours, is wild Alaskan salmon, but I am beginning to think that the best diet is the vegan one. It is a more simple food chain than eating animal products. I am concerned about all the hormones going into the fish that are changing the sex of the fish.
It was article number 6, entitled Worried about your bones and the subtitle The new research on keeping your bones strong. I need to read again the six tips to strengthen your bones naturally, but I definitely believe the answer is not about eating cows' dairy, which I think does not help osteoporosis and is a risk factor in breast cancer. If you want to take care of your bones, please read the article.
Chris Woollams has repeatedly told us about stem cells and how these can hide away from cancer treatment and come back later on to form tumours. I believe this and that this is why we get metastases or recurrence.
I was very interested in article 7, entitled Special report – Chronic Inflammation – the three causes and the subtitle Chronic Inflammation and all chronic illnesses, especially cancer.
I am still drinking my green tea and absolutely love it. I have Clipper green teas, sometimes leaf, sometimes pure green in tea bags and some times decaffeinated. I do love the leaf variety and this week I have been drinking lots of QI organic green gunpowder leaf tea and am still eating lots of bitter apricot kernels.
That is about all for now. I have been very busy this week and am still trying to catch up with my reading of the magazine What Doctors Don't Tell You.
Sending you fond thoughts.
Sylvia xxxx
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Hello Mary, again,
I think it is very important for all women who have been diagnosed with breast cancer to have a bone density scan before treatment to ascertain that they do not have any bone problems, osteopenia or osteoporosis. When they finish chemotherapy and/or radiotherapy they should have another DEXA scan to see whether their bones have deteriorated because of their treatment. You should also have your height measured before and after treatment to see if you have lost height because this is another sign of osteoporosis. If they have they will no doubt be offered bisphosphonates which have awful side effects and do not help with your osteoporosis.
I have osteoporosis which I am sure was caused by my cancer treatment and also by being told at the time of treatment that I had an overactive parathyroid gland which takes calcium from the bones and puts it into the blood. High calcium levels in the blood should also be checked because they can be a sign of cancer that has spread to the bones.
I think it is always a good idea to have a thorough check up on your state of health on diagnosis and then before treatment and then after treatment.
Thank you, Mary, for posting all that information from Chris Woollams article 6 on osteoporosis. The importance of a healthy gut should be obvious to all of us now if we have been reading what Chris says. A healthy gut is getting some publicity now.
Once again, many thanks, Mary, for the fine job you are doing on this thread.
Take care.
Love.
Sylvia xxxx
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Hi Sylvia
Thank you (and others) for your very kind welcome. I had 3 cycles of FEC (combination of 5 fluorouraciil, epirubicin and cyclophosphamide) and 3 cycles of Docetaxil over 18 weeks. Chemo was not quite plain sailing (I was hospitalised for a week with neutropenic sepsis and I ended up with pneumonia). I had a partial response to chemo with my tumour virtually reduced in size by a little more than half (from 2.2cm to .9cm when surgically removed). I was very pleased with results of surgery (no sentinel node involvement, lumpectomy with clear margins and I'm now halfway through 3 weeks of radiotherapy.
I'm feeling a bit tired, experiencing some insomnia, chemo related bone pain, inflammation on wound site and still not got my core strength back but health is certainly heading in the right direction. I do hope to return to work soon.
Best wishes
Maggie
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Hi, Michael,
Thanks for posting the links. #24 talks about the newer treatments in the immunotherapy field not being very effective for treating TNBC. Sounds like research is ongoing, to try and find how to better be able to get the chemo drugs to the heart of the cancer cells.
Thank you for posting the next article #25 especially, as it answers my question on, what is k-167? Now I know it is a protein (in the cell, I assume) that is being tested to try and find out how aggressive the cancer is.
The next article deals with the BRCA1/2 incidence in women with cancer, or rather without cancer who have genetic links to others who have it, to try and find out how many of them develop cancer later.
It certainly sounds as if a lot of time and study are being put into research on TNBC, that is good to hear. I guess they are surprised at the numbers too, especially the high numbers of so many young women of all nationalities. I know I have a lot to learn with all the new terms I am hearing, that I did not hear just 2 1/2 years ago when I was diagnosed.
Talk later, Mary
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Hello Maggie,
Thank you for your post and I was sorry to read that you had a difficult time with your chemotherapy. I was very sorry to read that you had to go into hospital for a week with neutropenic sepsis and then pneumonia. Neutropenia seems to be quite a common problem with people getting very unwell because of low white blood cells. I was wondering whether you had Neupogen or Neulasta as an injection the day after chemotherapy. This seems to be standard practice in the US in order to avoid problems of neutropenia, but I get the impression that it may not be standard practice in the UK. Perhaps newly diagnosed patients should ask about Neupogen or Neulasta when they are told they need chemotherapy. The last thing you want is to end up in hospital.
It was good that the chemotherapy reduced the size of the tumour. It is not always expected that the tumour completely disappears. My large tumour certainly did not, but reducing the size does help with surgery.
It is also good that you have no node involvement.
How are you getting on with radiotherapy? Lots of women find it easier after chemotherapy, but it should not be taken lightly. It makes people very tired and you do need to take it easy.
It is far too early to have gained much strength back. Your body has been through terrible trauma and your immune system weakened. It will take quite a long time to pick up again.
You must take it easy, and give yourself a lot of time to recover.
Have you mentioned the chemotherapy related bone pain to your oncologist? You should really have a scan to see what is happening.
What has been said about the inflammation on the wound site?
Do not be too anxious to get back to work. You need to get strong again. Remember your immune system is weakened and will not protect you as much as a normally strong immune system.
Have you had any scans yet? I had a CAT scan and a bone nuclide scan before and after treatment and all was fine. I also had an ECG before I started chemotherapy and after I had finished the chemotherapy. It shows you the condition of your heart before treatment and any damage after it.
If I were you, I would also get a DEXA scan (a bone density scan) to see whether you have developed osteopenia, osteoporosis or any other kind of trouble with your bones.
You are nearly through your treatment journey and you will slowly get back to normal.
Take care of yourself.
Fond thoughts.
Sylvia xxxx
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Hello Sylvia & all
Thought I would update you about my latest treatment as it does seem relevant to some of the questions on the thread.
I met with the oncologist yesterday and asked him about the mechanism of the 4 different types of chemo I am having. Whilst I cannot fully recall all of his explanation ( chemo brain) in a nutshell this approach seems to be because the drugs target the cells at different stages of replication / cell division. Carboplatin has been added in my case I think because of the size of the tumour - it isn't medullary as with Pam. Whilst I was having chemo today (last EC) I asked they nurse about the use of carboplatin and she said that she had seen it being used increasingly since the beginning of this year although she wasnt sure of the criteria for use.
Maggie - I have filgrastim injections for the 5 days following chemo. The active ingredient is GCSF ( granulyte colony stimulating factor) which essentially stimulates white cell production in the bone marrow. The aim is to avoid neutropenia and so far this approach has worked for me although I have experienced some bone pain which is a recognised side effect. It might be worth asking your team whether this is an option for you especially as you have been unfortunate enough to experience infection during your treatment.
On another note I asked the onc about taking cod liver oil tablets ( started taking these because of the vit d) . He advised not to take during treatment because of the high levels of vitamin A so for now I am hoping that the sun continues to shine so that I can get my vit d that way.
Pam - did you use the cold mitts during carbo/ tax? Apparently both drugs can cause peripheral neuropathy and I'm keen to avoid this because of my work although I'm not very tolerant of the cold normally so not sure how I'll get on. I too will be having my surgery hopefully in dec after I finish all chemo by end nov.
Chris x
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Hi Sylvia and Hi Chris
Thanks for your messages. The policy in my local health board is not to give the GCSF when getting FEC- (it's not expected that the neutrophils and WBC will be wiped out with this). It is standard practice though to receive this treatment 24hrs after getting the docetaxil drug.
After first chemo my blood cells were drastically depleted- I had 2nd FEC as planned and several days later my temp started spiking. I had to go to hospital but as it was day 12 the doctor felt that my bloods would start picking up soon and as I was only borderline neutropenic I was not given any treatment.
My 3rd FEC was due 3 days later and I expected that this would be delayed until bloods had picked up to a reasonable level. Chemo wasn't delayed. I did ask if I would be getting the GCSF alongside but I was told that I'd only get this if receiving docetaxil! So - it was not a surprise that I ended up hospitalised with neutropenia a few days later.
I'm afraid that I was not very impressed with local policy - it certainly would have been much cheaper to have given me the GCSF following 3rd FEC ( in fact I think I should have been offered it after my first bout of 'borderline' neutropenia).
After various investigations including chest X-Ray I was told that they couldn't pinpoint any infection but I did end up with a pneumonia. In spite of all of this running into the time for 1st docetaxil there was no delay in chemo.
I did struggle with 2 docetaxil cycles. An additional concern was that there had been no reduction in size of my tumour since the 2nd FEC so I began wondering what the docetaxil was doing(or not doing). I said I didn't want the final one. However, after discussion with the pharmacist and senior nurse I opted for a reduced dose. I learned From the pharmacist that I had different types of cancer cells within my tumour and it was likely that the chemo was not dealing with one type.
All things considered I have found most of the health professionals to be very approachable and helpfully answered most of my questions (particularly my surgeon, an SHO and a radiologist). However, I would like to think that the multidisciplinary team will be on alert for others like me who do not respond to FEC as usually expected.
I do remain disappointed though that no one involved in my care felt able to ignore policy and respond to my clinical picture during chemo.
I'm now 2/3 through radiotherapy and it's been very smooth sailing so far. 😀
Sorry for such a long post
Xxxx
Maggie
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HI, Maggie,
You don't have to apologize here for long posts, we do lots of long posts!
I wanted to say hello too, and to tell you that I was also hospitalized while on chemo. In my case it was after my first treatment when I spiked high temps and extremely low blood counts about a week after my dose. I was in the hospital 4 days and did not get an active infection. I did get neulasta after every chemo treatment.
I am so glad you are sailing through the radiation, and also glad you are heading the right way in getting your strength back. It does take time, try to be patient with yourself.
I don't know how old you are, I was 61 when I went through treatment and it took a while to recover strength. I also had a lot of pain after chemo, that did die down after a while. I already had osteoarthritis, and I tore my rotator cuff in shoulder while on chemo. It seemed to me that if I had any physical problem going on, it was just worse after chemo. But things do get better, remember that.
Like you I hope that most patients get more personal care rather than having to tolerate their doctors just following the approved method. There is more to us than our age, weight, and height!
Talk again soon,
Mary
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hi sylvia and crew
My first week back at work is great. Still very worried but start to calm a little bit. Have had a 12 kg wight loss on this therapy and eating well sure does help. My shoulder has calmed down and so has my abdo . I panicked once because I could feel a small lump low on my chest wall which they ultra sounded and said were fatty lipomas due to the weight Loss I can feel them on my stomach and upper abdo as well so I'm hoping that's what it is and not secondaries whilst on treatment. Keep reminding myself MRI and liver ct clear 8 weeks ago As well myself of good prognosis bit 90% chance of non recoccurrance and a kp67 of 10. Need to stop look for things and concentrate on get better to stop look for things. Bat I'll very scare but u ladies are such a help
Cheers
Kath
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Hello Chris,
Thank you for your interesting post. All I know about the different chemotherapy drugs is that they belong to different groups so do probably have different functions. As for Carboplatin, I think in the UK it is a fairly recent addition. Back in 2005/6 when I was going through treatment, the taxanes (docetaxel = Taxotere and paclitaxel = Taxol) were relatively new, but I was told I would be given one. Back then Taxotere seemed to be given in the UK and Taxol in the US. My oncologist told me she was choosing Taxotere because it was less harmful on the heart. I think it is also something to do with the tree from which the drug is made. I think it is the yew tree that was the original source and there was a difference in species between the North American one and the European one. I think epirubicin, doxorubicin, cyclophosphamide, fluorouracil and methotrexate are what is known as first generation drugs and have been around for a long time. I do not know whether certain drugs are used rather than others, depending on the size of the tumour. We all seem to get the same mixture of drugs, and that is the same whether we are hormonal or not. The main difference being that patients who are HER2+ get Herceptin, which is a monoclonal antibody. I tend to think that to be triple positive is perhaps more aggressive than triple negative, but that is my own personal view.
As for carboplatin, which belongs to the platinum group of drugs, I tend to think it is more in use now because the drug companies have come up with it and want to promote and sell it.
I was interested in what you were told about not taking cod liver oil supplements because of high levels of vitamin A. There is some vitamin A in cod liver oil, as well as D, but we are all being advised to take vitamin D3 supplements and not cod liver oil. I am taking Solgar vitamin D3 (cholecalciferol) and take one softgel 5,000 IU each day and have been doing so ever since I was diagnosed, all the way through treatment and ever since. There is no vitamin A in this supplement and it provides 1,250% RDA. Remember that a lot of patients diagnosed with cancer are found to be very low or deficient in vitamin D.
On the label it says "Vitamin D is required to promote calcium absorption which helps to maintain healthy bones and teeth. Vitamin D also supports a healthy immune system. The vitamin D3 in this product is the same form produced by the body when our skin is exposed to sunlight. As we age, our bodies may produce this important nutrient less efficiently. This formulation is offered in oil-based softgels to promote optimal absorption and assimilation."
The other ingredients are soybean oil, gelatine, vegetable glycerine. It further says free of: gluten, wheat, dairy, yeast, sugar, sodium, artificial flavour, sweetener, preservatives and colour.
I hope all this helps.
Remember, as a general rule, orthodox medicine tends not to believe in vitamins and minerals, but promotes all sorts of other (toxic) pills!
Continue to ask as many questions at the hospital during your treatment. It is your body and belongs to you.
As for cold treatment during chemotherapy, it is quite common in the US but I do not know how common it is in the UK, but it seems to be more common than when I was going through treatment. I asked about a cold cap to prevent hair loss, but my oncologist was against it and her reason was that she feared infection. I do know from the threads here that women are using icing hands and feet to prevent neuropathy. There is no harm in asking about it. I have peripheral neuropathy in the feet and my oncologist told me it was definitely the Taxotere that had caused it. It would be the same for Taxol.
Please keep in touch and let us know the date of your next treatment.
Fond thoughts.
Sylvia xxxx
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Hello Maggie and Kath,
Thank you for your posts. I am just going to take a break and shall post later.
Fond thoughts.
Sylvia xxxx
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Hello Maggie,
Thank you for your post. I was most interested to read that the policy in your local health board is not to give the GCSF (Neupogen or Neulasta) when getting FEC, but that you get it twenty-four hours after the docetaxel drug (Taxotere). I wonder if they have done any research on this. It would be interesting to know how many patients who have FEC or EC do have trouble with low white blood cells and have neutropenia bad enough to need being hospitalised.
I do remember that it was after I had begun docetaxel that my eyebrows and eyelashes disappeared and that I had a metallic taste in my mouth and it was the docetaxel that caused my neuropathy in the feet for which I am told there is no cure.
Reading what you say it seems to me that you should have been given injections of GCSF. It might have prevented all that happened to you. I feel that borderline neutropenia should have been taken more seriously.
I agree with you about the local policy. It would have been much cheaper to treat the borderline neutropenia.
This is why I feel so strongly that patients should speak up and defend their own bodies. It is important to be in the know about what is available and not be shy about speaking up for yourself. It is your body and what is done to it is up to you.
It does not seem right that you ended up with pneumonia. When I was going through treatment I avoided going to the GPs surgery because I knew I would be vulnerable to picking up infection. A GP's surgery is the last place you want to be. The district nurse came to me throughout my chemotherapy, the day before I was due to have chemotherapy, and took blood which went straight to the hospital and the results were there when I turned up for my appointment. Often I was told what was going on with red and white blood cells. Fortunately I never had a problem and never had to delay chemotherapy. The chemotherapy drugs were apparently not made up until a patient was at their appointment and told all was fine.
At least all that is behind you now and soon your radiotherapy will be over as well.
Like you, I found all the staff at the chemotherapy ward to be very helpful and I had some interesting conversations with them while I was receiving the chemotherapy drugs. There is no reason why anyone should not be approachable.
The chemotherapy drugs are not always expected to reduce the size of tumours completely, especially if there are large tumours. My tumour was 6+cms and did shrink a bit to make surgery easier and more successful. That is why chemotherapy is done first on large tumours.
You have to remember that no one will take on the responsibility of ignoring policy, because if something should go wrong, the hospital could be sued. At the hospital the medical team work as a team and there are regular meetings during which the oncologist, the breast cancer consultant surgeon, breast care nurses, radiologists and even pathologists, discuss cases and together come to a decision.
Hang in the now, Maggie. You are nearly through this. After standard treatment you will begin the next part of the treatment by having regular check ups, alternating between the oncologist and the breast cancer surgeon. With me it was every three months for a couple of years, then every six months for a few years, and then once a year. I was discharged from the breast cancer consultant before the oncologist, so my last few years were once a year with the oncologist. I was kept under the charge of the hospital for ten years, but I think most often, especially with hormonal, it was five years, or at least that is what I have seen with people I know.
How are things up in Scotland? Tell us a bit about yourself.
Fond thoughts.
Sylvia xxxx
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Hello Kath,
I am taking another break but shall post later on.
Best wishes
Sylvia xxxx
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Hello Kath,
I was glad to know that your first week back at work has been positive for you. It will keep you busy and take your mind off other things. I would think it must be quite a challenge to be going through chemotherapy and working at the same time, so take it easy.
It sounds as though you have had a huge weight loss if I am reading 12 Kg correctly. That is about 28 lbs or 2 stone in old weights. Have you been trying to lose weight or have you lost it through worrying over all this cancer business?
Try to keep concentrating on the positive and I hope ll goes well tomorrow Monday September 12th when you have your third chemotherapy. Please keep us updated with how things go. Remember to keep well hydrated, rest as you need and keep looking forward to the end of treatment.
Fond thoughts.
Sylvia xxxx
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thanks Slyvia
You are correct it is 28 pound over 9 weeks. Basically due to anxiety nausea from the chemo and eating good healthy food! I have my Drs app tomorrow for review and I'll show him the fatty lumps I can feel with my fingers not the flat of my hand.
Chemo day is the Friday 16th and that will be my third AC then on to the Paclitaxel weekly fo 12 cycles so I'm slowly get there. Have been try to do some gentle walks and I will have the week off workafter chemo off because it knocks me out!
Taking each day as it comes and using the good prognosis by hey gave me as my mantra everytime I get down. I've also found reducing it right down to basics with mindfulness is help. I am resisting anti depressants they wanted to prescribe me as yet but I'll see how I go.
As always u are such a calming influence and I thank you and all the ladies in this forum for that. Talk soon
Cheers
Kath
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Hello Kath.
Thank you for your post. I was wondering about your weight loss. As you probably know, when a patient is due to begin chemotherapy, the oncologist asks for their weight and height. The reason for this is the chemotherapy dose is based on these two measurements. I am assuming this was the procedure for you. If you have now lost 28 pounds I would think that you need to let your oncologist know this in order for the dose to be adjusted accordingly. You do not want to be given too much of any chemotherapy drugs.
Even if you were overweight when you began chemotherapy, and are happy with the weight loss, you should still let your oncologist know.
If you were not overweight and have gone 28 pounds below your normal and ideal weight, you should also get that checked out.
I am pointing this out because you cannot afford to take risks with chemotherapy. Better safe than sorry.
I do hope all will go well on Friday September 16th and I shall be thinking of you. I hope you get on alright at the doctor's tomorrow.
Keep us up to date on what is going on with you and up date your profile as necessary, so that we have the details of you, personally, and do not get you mixed up with someone else.
I do hope things will go much better with you on paclitaxel (Taxol) with weekly doses.
Gentle walks seem ideal and do not forget to take the time to smell the roses and all the beauty of nature.
I think you are right to take the week off work after chemotherapy because there is no doubt it knocks you out and you need all your strength to get through the day.
You are doing the right thing to take each day as it comes, and I think that is a good way to live life in general. Concentrate on that good prognosis. If you find that mindfulness helps you keep doing that as well. We used to have a very nice lady and regular poster who believed in mindfulness and that it helped her. She was from Ireland, posted as linali (Lindsay). She has moved on now, but I do miss her on the posts.
Take good care of yourself and tell yourself you are going to get through all this.
Fond thoughts.
Sylvia xxxx
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Hello Sylvia,
Just one week until we leave for our 3 month trip - I am anxious and excited at the same time. Thank God that my health is good and praying that it remains so while we are away.
I just had my annual blood tests done (at my request). My white cell count is almost finally back to what it was pre-chemo, so I am happy about that. My Vitamin D levels are close to the maximum level measuring 186 nmol/L - over 200 is said to be toxic. My doctor is not concerned in the least about this - I take 4000 units of Vitamin D3 every day.
I will continue to read the posts here, and occasionally try to post, but our itinerary is very full. The month of November will be in New Zealand, the rest in various parts of Australia. I will be glad to have the long flight behind me (16 hours) - non stop from Vancouver to Sydney, then a short flight to Brisbane from there. Makes me tired just thinking about it.
To all those going through treatment, I wish the very best, and all I can say is that if I can do it, every one else can. It is not easy, but it passes and the most important thing is to take the utmost care of oneself - rest lots, eat small nutritious meals, keep hydrated, walk outside every day and take each day as it comes with an open heart and an open mind and all with gratitude.
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Greetings Everyone,
I'm not able to post as often as I would like, but to respond to some previous questions, yes, I do take Zofran. I find with the AC that it takes the edge off of the nausea, but that I have to alternate with Ativan and keep both up around the clock on the bad days. I've always been vulnerable to nausea, though, so it's not too surprising. With the Taxol alone, I only had to take anticids. On Taxol/Carbo weeks, I had to treat nausea, but not as carefully. It's interesting that I was told that Zofran causes constipation, but I'm not really having that problem now that I've finished the Taxol. It's hard to know, with all that our poor bodies go through with all of these chemicals and medications.
If I understand correctly, the reason that I am having Carbo is a recent update in protocol, (possibly a more aggressive one to address the triple negative status). I didn't explore that too deeply with my oncologist. As far as medullary, I looked up the term, and still am not entirely sure how it applies. No one has told me that is part of my diagnosis. I do pretty well with my research and most terminology, but that one has me stumped.
I also have been drinking coconut water for months. I'm looking forward to drinking green tea after treatment. I got the idea somewhere that drinking that and using tumeric are not a good idea for me right now. I could also look into that in more detail, but there are limits to how many hours of research and "cancer" I'm willing to delve into when I'm feeling well enough.
I have not used cold mitts, I've only taken B vitamins. I had fleeting neuropathy, but the only lasting numbness is in one of my feet, and I'm hoping that will pass.
My husband has just pulled dinner together, so I'm going to dash off. I hope everyone is having a beautiful Sunday.
Pam
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Hi Pam, I was told no tumeric supplements, or green tea during my chemo, but ok afterwards. The reasoning is it could interfere with the chemo process. I drank quite a bit before dx, so now I love having it back. During Taxol, I did ice my hands and feet. I still have quite a bit of neuropathy in my hands.
I'm recovering well from my minor stroke. I'm in occupational therapy for my left arm and hand that seem to be affected. Doing well so far. Just letting myself heal. I'm slowly working back in daily exercise. Looking forward to fall, and doing my crafts.
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hi Sylvia
Had a good chat with my oncologist today and he was pretty good. Told me that my prognosis was very good and had a good feel of my tummy and was very happy. Could only feel the lumps when standing up and he said they were fatty lobules just like a side of lamb! ((charming)
He tried very hard to push with me to me the fact that chemo was precautionary only and to try and focus on my 90% non reoccurance diagnosis. Still very hard for me but onwards and upwards to my next dose of AC on Friday! I wish I could get my mind into gear
Added surprise tho my grandkids are completely Ng to visit! Wednesday! Can't wait!
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Hello adagio,
It was so nice to hear from you. I can understand your state of both anxiety and excitement. I am sure you are going to enjoy this trip and really hope you will find a bit of time here about it all.
I was glad to know you got good news from your blood tests. I was interested in what you said about your white cell count almost being back to your pre-chemotherapy level. It just shows you how long it takes to recover from all this toxic treatment. Congratulations on your vitamin D levels. I think these levels are very important. Like you, I take 4,000 IU of vitamin D3 every day and have done so for many years.
I do not envy you that long flight of 16 hours from Vancouver to Sydney. I do not think I could do it. I thought it was bad enough when Raymond and I were flying from London to Montreal for four years, nine years from London to Ottawa, and for four years from |London to London Ontario. We came back to the old country almost every year and when we were doing the journey from Canada to the UK we used to arrive exhausted, but had to go visiting everyone!
A friend of ours in Exmouth is going off travelling soon. She says she wants to do it while she feels she can. On October 13th she is setting off to Canada by herself. She is flying from London to Toronto and will visit Niagara Falls. From there she is flying to Manitoba and is going up to Churchill and will be going on various wildlife expeditions. She is 70 and I do admire her courage for doing this alone.
I agree with everything you have said to those going through treatment about how to get through it.
Take care. Fond thoughts.
Sylvia xxxx
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Hello Sylvia and all
For some reason I'm having a very frustrating time posting & finding that my pc locks up very quickly so all my post is lost! Going to try short messages to see if that works
Chris
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Hello Pam,
It was nice to hear from you. I was sorry to read that you are very sensitive to nausea. Have you tried drinking ginger tea? I drank it all the time during chemotherapy and never had a problem with nausea. You can get lemon and ginger tea or pure ginger tea, which I really liked and I also used to add pieces of real ginger root in these teas or just drink brewed ginger root. You can also get ginger supplements.
I also ate dried prunes and dried figs throughout my treatment and never had problems with constipation. Bananas, especially under-ripe ones are good for keeping diarrhoea at bay.
As far as I know from reading, medullary is one of many types of breast cancer. Invasive ductal carcinoma (IDC) is the most common type and is used to describe breast cancer of no particular types. Other types are lobular breast cancer (LBC), inflammatory breast cancer (IBC) and metaplastic breast cancer (not to be confused with the word metastatic).
It seems to be that there is more emphasis on receptor status and whether you are ER+ or ER-, PR+ or PR-, and HER2+ or HER2-. That is whether it is hormonal or non-hormonal. Whatever it is, we all seem to get a mixture of the same chemotherapy drugs, such as epirubicin or doxorubicin, cyclophosphamide, fluorouracil, methotrexate, docetaxel, paclitaxel, and now the platins. It is the oncologist who decides on the mixture.
If you are HER2+ you get injections of the monoclonal antibody Herceptin.
I was interested to know you are drinking coconut water. It is said to be very good for hydration and full of electrolytes. It is quite expensive here but I find it very pleasant to drink. I watched a television programme in which it was tested against water and found to be no better at hydration than water.
I do not take much notice of what the medical experts say about food and nutrition. It is a minute part of their training and of course they believe in pills. I drank lots of green tea throughout my treatment, as well as having turmeric in soups. I also ate bitter apricot kernels throughout my treatment and followed my own ideas about nutrition. I am still doing this and have now reached over eleven years since diagnosis.
I agree that there are limits to how much time you can spend researching cancer. You need to get on with as normal a life as possible.
I am not sure what will happen about your neuropathy. I have it in the feet and was told by my oncologist that it was caused by the chemotherapy drug docetaxel and that there is no cure. Two podiatrists have told me the same. It is easy to keep track of whether anything is improving with neuropathy by having someone, like a podiatrist, prod your feet with a needle while you keep your eyes closed. I have no feeling when this is done.
Am I right in thinking that your next chemotherapy date is September 20th?
Keep positive, rest as you need, and keep hydrated.
Fond thoughts from the UK.
Sylvia xxxx
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Hi Sylvia & thanks for the info re vit d. I think this is perhaps the product I should be using rather than cod liver oil. I think it was the vit a that my oncologist was worried about.
Interested to read from others about avoiding green tea during chemo. Anyone have more info on the reason for that? I had started drinking it but happy to go back to earl grey decaf for now!
Chris
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