Calling all triple negative breast cancer patients in the UK
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Hello Sylvia,
It seems these days there is so much to read I am quite behind. Chris Woollams' latest newsletter has very long sections, last night I got through the 4 pillars of cancer; well, most of it. I have a long way to go to finish the whole letter!
Reading the section about the environmental toxins, it almost gives one a feeling of utter helplessness. Fumes, gases, cleaning products, body lotions, carpets, smog, it seems really hard to think one could even get away from all of it anywhere in this world.
I haven't tackled the immunotherapy subject yet in any depth, I am glad to read what you are posting. As I read other thread posters' messages, on this thread and others, it seems some women are having rather more extensive gene testing, tumor susceptibility testing etc. than others. I am not clear on all that, and how it all works. I guess it is early days for all this. And, as you said, these substances are not magic bullets and have side effects of their own.
Our weather has done a flip-flop. Now we are in the 40s and 50s F and very damp and rainy. The ice and cold of the weekend is a memory. I can't remember the last time we had a sunny day.
I am in Missouri, in the very center of the US. We have very changeable weather, towards the end of the week we are going to have a day of 60F. I think next week we are going back to freezing temps.
I will get back to Chris Woollams' post later today, and see what else is in there.
I'll talk to you soon!
Love, Mary
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Hi Val,
I do feel a bit better, but I would be lying if I said I felt great. I am having a lot of sinus pressure and pain and slight sore throat, lots of sinus drainage. It doesn't help that our weather is crazy, icy then warmer, and back again.
I am sorry that your neuropathy and arthritis have joined forces against you, I hope the cortisone shot gives you a lot of relief. Do you think your neuropathy has gotten worse with time, or stayed the same? I have it too, and to me it seems at times it's much worse; and if I have a lazy day it doesn't bother me much. It seems the more active I am the more it bothers me, which is too bad because I like to be very active.
Talk to you soon! Mary
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Hi, Maggie,
I am so glad you got your appointment moved up to tomorrow, that's great. Nothing worse than waiting and worrying. Yes, we must speak up for ourselves at all times, because in many cases nobody else will.
Glad you have your Robert Burns dinner to look forward to, I am slightly familiar with his works. Mainly just clips from them, such as "The best-laid plans of mice and men go oft awry", which is probably not exactly right. That piece of wisdom is often in my mind because it is so true in all our lives, we make plans and often watch them run off the rails. I remember "My love is like a red,red rose", so very romantic. I think our country has a national poet, but I couldn't tell you who he/she is or anything they've done, they are more modern and change frequently. I think we should have Walt Whitman or Robert Frost for our national poet.
Have a good appointment tomorrow! I will sign off with a Robert Frost quote. "The only way round is through."
Talk to you soon! Mary
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Hello marias,
Thank you for your post. I am trying to work out what exactly happened with your first chemotherapy treatment.You said that you were at the hospital for five hours. I was expecting you to have an intravenous infusion of doxorubicin, cyclophosphamide and flourouracil combined. Did you have this?I was a little puzzled that you said you went home and then had a 24 hour infusion of doxorubicin.
the treatment is usually done at the hospital and then you go home with anti nausea drugs to take for a few days.
Are you trying to ask me what kind of test and scans I had before, during and after treatment? I am picking up on the word examen that you are using.
Post back to explain more.
Fond thoughts
Sylvia.
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To all,
Talking about poetry reminded me of something about an onion......I found it, it's by Carl Sandburg.
"Life is like an onion, you peel it off one layer at a time, and sometimes you weep."
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Maryna - I love that quote about the onion!! It says it all.
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HELLO sYLVIA, I have the three but they send me home with an infusor of doxoribucina, for 34 hours. The doctor says this last afect your hearth so they have to give to u slowly. I feel well I little tired.
I take this from a page in spanish. I dont have cardiac risk, but they do this to me. Maybe has to be with the dead in the first month of chemo that u post in "what the doctor dont tell"
Patients with cardiac risk:
If the risk of cardiotoxicity is high, consideration should be given to
Treatment with a continuous infusion of 24 hours instead of one
Injection in a stroke. In this way, toxicity could be reduced
Without impairment of therapeutic efficacy. Before each cycle
Will measure the ejection fraction of these patients.
The risk of cardiomyopathy increases gradually with the dose. Do not
A cumulative dose of 450-550 mg / m² should be exceeded.
If you have previously suffered from heart disease or radiotherapy in the
Heart or the mediastinum, cumulative doses should not be given
Exceed 400 mg / m² (Monitoring of cardiac function: see
Section 4.4 Special warnings and precautions for use).
When combined with other oncolytic preparations,
Dose of 50-75 mg / m². Myelosuppression may be more severe
The additive effects of the drugs.
https://www.aemps.gob.es/cima/pdfs/es/ft/65416/FT_...
Here in english another article.
http://annals.org/aim/article/695319/reduction-dox...
My mother is here with me she came on 31 of december and my brother travel for third time to be with me. Today one of my aunt travel to to visit me, she is going to be a week here.
NOw is 4:00 am, I get a hot water bab to put over my liber and try to sleep two or more hours, I hope I can explain my self about the treatment
Good day to u,
and thank for be there for me-
Marias
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Hi, Marias,
Sorry you have to be here, but glad you found us. I understand now why they are stretching out your doxorubicin. Here we have our heart tested before treatment, and if we have any weakness in it, I suppose they somehow lighten the dose. I don't know anyone here that did it that way. I do know one lady who did have heart damage after chemotherapy. She had to have a fibrillator inserted in her chest. (or is it defibrillator?)
Anyway, hope the treatments go smoothly for you,
Talk to you again soon, Mary
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Hello Mary, I hope everything goes good with my hearth, and be ok. I still in bed feeling so tired.
Have a nice afternoon
Marias
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Hello Marias,
Thank you very much for your last post and for those most interesting links, I am going to read them again in more detail.
I think that we have all learned something from you today.I do not know whether this kind of infusion at home is done in any other countries, but if it is, I am sure that someone will post to let us know. It sounds as though you must have had some kind of portable pump attached to you for this, instead of the usual drip machine that is used in hospitals. i know that patients have pain relief administered through portable pumps that they wear on themselves.
With reference to my own treatment, I had an ECG scan before I began my chemotherapy and then I had another ECG when I had finished my chemotherapy. I was told that everything was in order.
My oncologist opted for epirubicin for my treatment (Ellence) and she did tell me that it was less harmful on the heart than doxorubicin. Back then, in 2005, I noticed that epirubicin was being used more here than doxorubicin.
When I had my chemotherapy it was standard practice to have treatment every three weeks. I think that it is still probably standard practice for these combined drugs, but for the chemotherapy treatment with the taxane drugs (docetaxel, Taxotere and paclitaxel, Taxol), it is now quite common to do the treatment every week. Women on the thread seem to find the taxanes easier to deal with on a weekly basis.
When I started treatment for breast cancer, I had a CAT scan and a bone nuclide scan to see whether there had been any spread anywhere else. Both scans were clear. I had the same two scans when I had finished treatment.
I did not have any genetic testing. I was interviewed, at my request, by a genetic nurse who asked me a lot of questions about the family etc. She told me that she would not refer me to a genetic consultant for testing, because she did not think I needed it and that i was unlikely to have BRCA1 or BRCA2 faulty genes because of my age at diagnosis. It might be easier now to get genetic testing here. If you feel you would like a genetic test, just request one.
Wishing you all the very best.
Sylvia xxxx
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Hello Mary,
Thank you for your post on January 17th. Once again I am trying to catch up with everything. It is true about the newsletters from Chris Woollams. It is easy enough to read through the actual newsletter but it takes a long time to go through all the headings with a bullet against them and look at all of these in detail. I have yet to tackle each one from 1 to 10. I posted first of all about number 8, So you thought these new immunotherapy drugs were the safe future of cancer treatment. I did this because it so happened I was reading about immunotherapy in WDDTY magazine. I try to keep everything orderly, so as not to confuse people posting and viewing. I do hope to cover all the topics from 1 to 10 but I think it will take quite a time. I do hope people will join up and take part in all of this.
I do agree that reading about environmental toxins leaves one concerned and perplexed, not to mention helpless.
I am concerned that immunotherapy will prove to be as toxic as chemotherapy. This illness is too complicated for there to be a magic bullet. I have been reading in Chris Woollams detailed information on immunotherapy, some of the names of these new drugs. Their endings sound very much like the endings of the monoclonal antibodies drugs. At one point they almost sounded the same. The best known monoclonal antibody is probably trastuzumab (Herceptin), but I am pretty sure that is injected. A friend of mine had it. Someone I know has recently had immunotherapy for cancer (not breast cancer), just one session so far, instead of chemotherapy. It will be interesting to see what happens. She had the treatment at the hospital and it was through the intravenous drip. The procedure sounded the same as chemotherapy.
I think we could all do with a bit of sunshine. I mean those of us going through winter. There is very little sun here in Exmouth. Like you in Missouri, our weather is very changeable. I was at a garden centre this afternoon and saw a beautiful clump of daffodils in full bloom on the lawn.
That is all for today. It has been another full day for me and I am looking forward to relaxing a bit this evening.
Love.
Sylvia xxxx
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Hello Gina,
Thank you for your interesting post of January 17th. You are quite right that we all need one another for support.
I was interested to know that English is your second language and I do congratulate you on how well you write it.
I was also interested that you also have a language called Tagalog/Filipino.
What is the origin of Tagalog? I have been looking in my encyclopedia about the Philippines and I noticed that Tagalog and English are both official languages. Spanish is also mentioned as a language and it says there are many others? Is Tagalog your first language? Who were the first inhabitants of your island or islands? It says in my book there are 7,100 islands of which 2,770 are named and about 1,000 are inhabited.
I have been reading up a little bit about the history of your country and was surprised to read that Islam was introduced in the late 14th century. Ferdinand Magellan was the first European to reach the Philippines in 1521. In my mind I have always strongly associated the Philippines with Spain, but that was probably the way we were taught history and geography at school. I know that the Spanish founded Manilla in 1571 and named the archipelago Filipinas after Philip II of Spaine. Apparently, again according to my book, the Spanish converted most of the population to Roman Catholicism, failing only with the Muslims on Mindanao and Sulu.
Can you remind me where exactly you are in the Philippines, as I cannot remember what you said? Do you speak Spanish?
I was most interested in what you said about broken English in Filipino being called Carabao. Is that a bit like Pidgin English in some countries?
You should not worry about the way you write English. It is excellent. There are lots of English people who do not write anywhere near as well as you do! You have to remember that with me I taught English and French as a second language.
I was intrigued to read that you are a Pinay. What does that mean exactly? It is good to educate ourselves.
Thank you for your update on your experiences with docetaxel (Taxotere). It looks as though patients seem to have a harder time on docetaxel and paclitaxel (Taxol). From past posts on here patients seem to find it easier when it is done weekly rather than three-weekly. You should let your oncologist know about the muscle and joint pains. As for the mouth sores keep rinsing them with bicarbonate of soda or Biotene products. I think mouth sores are fairly common. I do hope your tonsillitis will get better, as this could result in your not being able to continue the next infusion of docetaxel. I do hope you get better soon and can come off some of your pills. With the antibiotics we know we have to take the full course to clear up any infection. You might want to try some plain soy yoghurt with live cultures to help ease your sore mouth and also to help with your gut, which will be affected by all those meds, particularly antibiotics.
I do not know whether immunotherapy is being used on its own for breast cancer. It is early days yet with this treatment and apparently it is not without problems. I know that it is being used for melanoma but I do not know how widespread that is.
I think we are all agreed that prevention is the best way.
Remember there has been a lot of trouble with the HPV vaccine.
I do not believe that there will be a vaccine for cancer. It is a complicated disease and I do not think there will be a magic bullet.
That is about all for now. Thinking of you and sending you very best wishes.
Sylvia xxxx
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hi all
Hope everyone is well. Last dose of paxetaxol done a week ago and I have just had my mapping scan and tattooed ready for rads on the 30 th for four weeks. Still very sore and achy all over and have peripheral neuropathy in the tips of my fingers. I've been told it takes about four weeks before I will start to feel better. The radiotherapy unit is 6 hours away in Adelaide so I will be living down there for that time. My head is slowly get clearer but anxiety is still a big problem for me! Learn slowly to deal with it but very hard! It has been sooo hot! Temp hit 44 degrees Celsius in Adelaide yesterday. We are currently driving home and there are lots of Roos and emus looking for shade
Cheers
Jath
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Hello Kath,
It was nice to hear from you. Put your chemotherapy behind you now and just get yourself ready for the four weeks of chemotherapy.
When you went for your mapping out were you given any advice about what to do and what not to do? If you were it would be useful to share them with all of us. It is helpful to know what patients are being told in different countries.
It is a pity that you have to travel so far for your radiotherapy treatment and it will be difficult not to becoming home after each daily treatment. Will you come home for weekends?
I was sorry to read that you are still feeling afraid and anxious. Try to do things that make you relax or make you laugh. Have some counselling if you think it will help. It is always beneficial to talk out your worries and fears. Yoga,meditation and quiet music are supposed to help. Come here and rant as much as you like, if it will help.
I do not know how you manage to cope with all that heat.
Take care and keep in touch.
Fond thoughts,
Sylviaxxx.
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Hello adagio,
I have been busy completing all my reading about immunotherapy from Chris Woollams of Cancer Active. It is difficult to sum it up but I do not feel that optimistic about it. Everything seems to be about expensive drugs with nasty side effects.
Having completed my reading I went back to the magazine, What Doctors Don't Tell You, and the articles in there about prostate cancer.
Again, it is difficult to know what to think. Going through the article – Prostate cancer news #1 Neem ingredient reverses prostate cancer.
A bioactive compound found in the neem plant could reverse prostate cancer. Astonishing results have been seen in tests with laboratory mice given oral nimbolide, the active terpenoid compound in neem and there have been no adverse reactions.
I do not know what to think, but if it works in humans that is good news. How far off is that?
I know neem products and have used neem shampoo and conditioner in the past. I seem to have faith in treatments that have been used for a long time in India and China.
Prostate cancer news #2 Do not treat slow growing prostate cancer, say researchers.
I think this makes sense because I have read that people are dying more from cancer treatment than from the actual cancer. I was reading a link Mary sent and in it I read that it does not seem to make sense to treat a cancer with things that cause cancer, chemotherapy and radiotherapy. What choice do we have?
I do not feel that without the treatment for breast cancer, I would be alive today. However, if I had something that was slow growing I would probably not have the treatment.
Prostate cancer news #3 Standard prostate cancer treatment doubles dementia risk. ADT (Androgen deprivation therapy) used against prostate cancer, also doubles the chances of dementia according to a new study. This is the standard treatment for prostate cancer that has spread.
ADT lowers testosterone levels, but it appears to have an impact on a patient's chances of developing dementia or Alzheimer's years later.
I have asked Raymond what he thinks and he has said that if it were slow growing, he would probably not have any treatment.
I noticed on the same page a short article on immunotherapy. I just do not believe in a magic bullet.
Thinking of you and sending best wishes.
Sylvia xxxx
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Hi Sylvia,
Thank you for your post again. I am amazed that at your age you still have so many interests. You are like the Energizer bunny that keeps going, and going and going.
I can only speak two languages, Filipino/Tagalog and English. We were taught a little bit of Spanish in college but it was made an elective subject i think 30 years after i graduated. Our national language is used to be called Tagalog but I think during President Marcos' term in the 70's it was changed to Filipino or Pilipino for nationalistic reason, since Tagalog is mostly used only in the Northern part of our country and Filipino is considered to be more generally used in the entire country. I cannot exactly tell the difference between the two, they are almost the same and the only description i can make is that they are like the Old (Tagalog) and the New (F/Pilipino) Testaments. I think the Pilipino alphabet called alibata is similar to its English counterpart except for some missing letters like f,v, x and z. We do have the "ng" included in the alibata. Historical facts say our language is Austronesian, whatever that is, but it certainly doesn't sound Australian to me, mayt! Lol!
I can't remember much of our Philippine history but I think we came from the Malay race just like the Indonesians and our physical features are pretty much the same. Our aborigines were called Aetas who are pretty much like the American Indians, only much shorter.
The Spaniards came in 1521 with Ferdinand Magellan and introduced Christianity/Catholicism by first fighting with the local pagans led by the brave Lapu-lapu. Magellan was killed by Lapu-lapu. Eventually, Lapu-lapu was converted to Catholic. This I remember from a popular local variety song. Lol!
I remember a local joke about this and it goes like Who killed Magellan? The answer would be Lapu-lapu. But since our history did not say who killed Lapu-lapu, the question remains. Some wise guys invented an answer and said "the cook" killed Lapu-lapu, referring to a local fish with the same name and in English it is the Grouper fish. Lol!
I dont exactly know how Islam was introduced in the South/Mindanao. I think it came from the neighboring Borneo, which is part of Malaysia. The Spaniards did not pursue their conquest of Mindanao because they have fierce warriors who will fight to the death.
I am from the Natinal Capital Region which is called Metro Manila. I am a Pinay which means a native Filipino female. Pinoy for male or Pinay for females is just a short for Pilipino citizens.
I guess you can consider Carabao English as Pidgin English which is regarded as a simple common communication that comes out between two foreign dialects. It is like a Tarzan sort of language, "Me Tarzan, you Jane, him Cheetah". Lol.
I am having a bit more difficulty with Docetaxel. Aside from the SEs i have mentioned before, two days ago, i developed a red skin on my left IV hand and i am not sure if it is from the chemo, or an allergy, or an infection. It looks a little bit swollen but it is not painful. I texted my MO about it but she hasnt replied yet. I just did a cold compress on my hand temporarily and am observing it.
Ok, this is another one of my long post.
This is all for now.
Hugs,
Gina
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To all,
May we all find our rainbows after the rain!
Love yah all.
Gina
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Hello Gina,
Thank you for your post. It is true that I have a lot of energy and that I also have a very enquiring mind that is never still. There is nothing of the elderly lady about me.
I was really interested in what you said about the two languages that you speak. You have explained it all very well and I had to laugh about what you said about it certainly does not sound Australian to you! Accents are very interesting and a bit of a puzzle. Why do English people going to North America, Australia, New Zealand. South Africa develop different accents. Within the UK we have very different accents and some of those in Scotland are quite difficult for Southerners to understand.
Again you made me laugh about that popular song and Lapu-lapu.
You have certainly given a good account of some of the history of your country. I was interested to know that you are from the Natinal Capital Region called Metro Manila and that you are a Pinay, which means a native Filipino female.
You have such a good sense of humour that you will always be able to make us laugh.
I was sorry to read that you are having a bit more difficulty with docetaxel. I do hope you will get an answer about the red skin that you have developed on your left IV hand. Could it be from the way the IV was inserted? I know that if not done carefully and gently, it can cause nasty bruising. I would think that the cold compress you did on the hand while waiting to hear from your oncologist is a good idea.
Wishing you all the best and hoping you have a good weekend.
Fond thoughts.
Sylvia xxxx
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Hello Gina, again,
Many thanks for illustrating our thread with your lovely pictures. I am sure it makes us all feel better.
Very best wishes.
Sylvia xxxx
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Hi Sylvia,
Just a small spelling typo error, I come from the "National" Capital Region which is Metro Manila.
Thank you for acknowledging my posts.
The bright-colored pictures i posted are meant to put a little bit of positivity on the thread. Life's road need not be dark and dull, it can be as bright as the rainbow, and that if we only persevere, we can realize our dreams in the end.
You know the saying, "There's a pot of gold at the rainbow's end". It's one of my favorites.
The butterflies represent Hope, that during its caterpillar stage, they may look ugly and scary, but through Hope and not giving up, they can transform into beautiful and colorful butterflies just as what our lives can become.
Happy thoughts,
Gina
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Hi Gina
After my second Taxol my Palm got red and itchy,a few days later the skin peeled.Someone said this might be hand and foot syndrome-which comes from the chemo leaking from the capillaries into the skin.
Rhonda
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Hi Rhonda,
Thanks for telling me about your palm side effect after taxol. I researched a bit and it is called the Palmar-Plantar Erythrodysesthesia. It can actually affect hands, feet and joints and usually accompanied by pain.
My skin redness is on the IV site itself, on top of my hand, not the palm. What puzzles me is that it only appeared 6 days after my Dicetaxel infusion. As i was given the premeds - dexamethasone, dyphenhydramine, and aloxi - before the docetaxel, the nurse manually pushed those premeds into my vein which is quite painful. It was unlike my previous FEC infusion procedure which used an auto pump machine to administer all of the drugs intravenously.
The manual pushing might have bruised my veins but why did the skin redness appear only 6 days after? I also remembered using the washing machine and soaking my hands with detergent soap in it, before the redness appeared. Another possible suspect is that it might have been infected since i can still see that my needle prick is not yet fully healed after the redness started.
The only thing i did was ice my hand with a ice wrapped in soft face towel. The redness seem to have subsided and turning a little bit black and drying.
I now try to avoid dirt, soap and hot water on my affected hand to not aggravate the condition.
What's next for your treatment? Are you totally done? How about radiation? My MO says i dont have to do radiation since my tumor is less than 4 cm. and my cancer lymph nodes is below 4. I dont know if this is right but i am happy to avoid it. Just two more Docetaxel infusions and i am done with chemo.
Fingers crossed for both of us.
Wishing you a successful treatment and a cancer-free life.
Hugs,
Gina
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thanks Slyvia
Try very hard! The radiotherapy taught me a technique for breathe holding so that my heart and ribs aren't damaged on the left side! Still very sore and have pins and needles in my hand and feet . The tattoo sites also give me some pain in the am but that settles as the day goes on. I really don't know how people can get big ones! Physio has been giving me gentle massages on my shoulder blade which help but I'm sore all over today. They tell me it takes about 4 weeks before u feel human again! I have a slow hair growth but not much yet. Happening very dlowl
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Hi Sylvia,
That is a lot of information on prostate cancer and I know there is even more out there - so it seems like there is research happening around that cancer. I have a family friend who is 90 years old and he was diagnosed with prostate cancer about 20 years ago - they did surgery, without further treatment until about 2 years ago when they found a small malignancy in his bladder - they have been treating this with BCG (the drug that is used for tuberculosis) - he did have incontinence for several months, but he is fine now. I am actually quite surprized that they are so diligent with his treatment at his age - but then again, the skeptic in me thinks perhaps they are using him as a guinea pig!! Did you read the bit about the BRCA and prostate cancer? There is so much information and I do not have a lot of faith in anything they say has been successful with mice because I think the human body can and most often does react completely differently to rodents.
I saw my oncologist yesterday and she is very pleased with my progress - she did a thorough examination of my lymph nodes, breasts and spine. She does not want to see me for one whole year - so I guess I have to believe her that all is well!!! It has been over 4 years since my surgery and she feels that if metastasis have not occurred by now, that the risk of it happening is quite low. I mentioned to her that I had been consuming a glass of wine almost every day while we were away, and she did suggest that I cut back on my wine consumption - so I will definitely do that. Although I do enjoy a nice glass of red wine. She said that one cup of coffee a day is absolutely fine. Of course I will continue with the healthy eating of the rainbow diet and with my daily 5 mile walks. Like you, I do not take anything for granted - each day is a gift and I try to live it to its fullest.
Have a wonderful weekend.
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Gina - so sorry to hear about the inflammation of your vein after the chemotherapy. It sounds like some of the drug may have leaked into the vein and cause this. I hope you get relief soon - applying ice and keeping it clean is probably a good idea, and hopefully they can find a different vein for your next treatment. I am surprized that they didn't use the drip for the taxol treatments - perhaps you should ask about that at your next visit - I think it would be easier on your veins because the drug is in the saline solution.
Thanks for all your bright and cheery greeting cards. Wishing you a restful weekend and take great care of yourself.
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maryna - I hope you are almost better from your horrible cold and that the symptoms have started to subside. It is only this past week when my husband actually felt like he had a bit of his usual energy and the cough and sinus drainage have finally ended.
I had my visit with my MO yesterday and she is very happy with my current situation - now she does not want to see me for a whole year - yikes!! I guess I should be happy about that, but it is a bit frightening - but of course I can call her any time I have a concern. I do feel grateful and very blessed indeed. She still wants me to have an annual mammogram and I told her that I do not feel totally comfortable with that, but she still thought it was the best plan - I will have to rethink my views and decide what to do. Last one I stretched out to 16 months apart, I think I will do the same this time or maybe even 18 months?
Wishing you a comfortable and restful weekend.
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Kath - I had to do the special breath technique to move my heart and lungs out of the direct line of the radiation. I would suggest that you start practicing holding your breath - I did, and it seemed to help me a lot. Trust the process and try to relax into it - a lot of us have been there and done it and here we are writing on the boards here and feeling OK. The anxiety is totally normal - we all get it, but it is not helpful to our condition. Wishing you a good rest in the next 4 weeks before the radiation therapy.
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