Calling all triple negative breast cancer patients in the UK
Comments
-
Hello Gina,
I hope you are relaxing as you wait to begin chemotherapy. You will be fine.
Fond thoughts,
Sylvia xxx.
0 -
Hi Mommy Sylvia,
I hope you dont mind calling you Mommy. My mother is the same age as you. Yes, i am trying to relax, listening to music and watching tv. Today, Nov. 2, my husband and I will go to the hospital to arrange for my room admittance tomorrow. I will be staying for a day or two depending on my initial reaction to the drugs. Fingers crossed.
Hi Kath, deep prayers for you and me:
Father, You are present in the eye of the storm, always guiding and directing my path. There is so much information and so many decisions! It overwhelms me, Lord, especially when the world's wisdom and my own understanding are at odds with Yours. Lord, help me to bring every decision to You and follow Your lead. Help me not to be wise in my own eyes, but to trust You completely. Then I will have healing from my body and strength for my bones. In Jesus' name, Amen.
Hi to Mary, Cathytoo, Rhonda and to all nice ladies and gents on this thread.
i hope you are all doing fine. Wishing all of you a stress and cancer-free life.
All the best
gmmiph
0 -
Hi Sylvia, hello all. Thanks so much for this thread. It's an inspiration
0 -
Maryna - you look so liberated in your photo - I just love having that sense of freedom to be completely oneself.
Thanks for sharing the wonderful notes on the conference you attended - it is quite exciting all of the various treatments out there, but I also feel a lot of those treatments are quite inaccessible to the average person. However, I do applaud the people out there researching and trying to find things that work to keep cancer at bay.
I am now in New Zealand,and each and every day I give thanks to God for the ability to do the walking and hiking. My eating habits are definitely suffering, but I am doing the best I can.
Wishing you only the best.
0 -
HI, Kath,
I had burning feet after a couple treatments of chemo, I would lay on the couch and rest my feet on ice bags wrapped in towels. Pins and needles are difficult to do anything about, in my opinion. As for the body aches, for a while I resorted to pills to help. After chemo I had a lot of pain and I took a pain pill when it was really bad. I tried not to take much of it because it had the bad effect of constipating me. Can you try warm wraps instead? I have 2 wraps, cotton stuffed with flax, I still use them almost every evening. I heat them in microwave, and they feel wonderful on my back and shoulders. I have not taken a pain pill in the last year, I do sometimes take ibuprofen.
Thinking of you!
Mary
0 -
Hi, GG-Gina,
Thanks for posting your beautiful prayers!
Once you get into your chemo routine, it gets easier than when you are dreading it. The nurses will fuss over you, and time goes by quickly. It's great that you have a nice husband to help you when you get home, not that you will need it. But it is a good time to be pampered a little bit!
It is different from here in that you get an overnight hospital stay. We here, as far as I know, have our treatment at a hospital or clinic and are sent home. And I would always have to go back the next day for a shot of Neulasta, or Neupogen, depending on the place. It is to build up the white cells more quickly.
I will be thinking of you tomorrow!
Mary
0 -
Hi, Adagio,
How great to be in New Zealand! So beautiful there. One of my favorite movies is Lord of the Rings, I think it was completely filmed in New Zealand, just gorgeous. I have heard a few celebrities are planning to move there if our country falls apart, must be a good place in many ways. Although I have to hope our country doesn't fall apart!
I do feel so liberated when I go away, and usually don't want to go home. Since my husband's death a lot of things have fallen in my lap. When I am gone I put them in the back of my mind (along with cancer worries!), when I get home it is back to making lists to remember what I am supposed to be doing next! I have decided my best talent is going on vacation.
After 3 months you are probably ready to go home! For a while anyway. You are certainly having a fabulous trip. And you are right, it is hard to follow any kind of good-eating program when away and often eating in restaurants.
The conference was just great, the doctors and speakers seemed to be such nice and generous people. Generous with their time and information. Much of what they spoke of is at-home lifestyle changes; nutrition, exercise, self-care, mindfulness, stress reduction. There were also doctors there who have clinics, and treat people at these clinics, to the degree that they can because of legal restrictions.
Where are you in your itinerary? Do you have one more month to go?
Enjoy! Talk soon, Mary
0 -
Hi, dear Sylvia,
Thanks for calling me an asset, I appreciate it. And we all appreciate you! You are the very best at keeping up with everyone's status and being our calm voice of reason.
We did take in a lot of information at the conference. I am so glad I took the notes that I did, and I do hope that we both heard right and are getting more notes and DVD's later. Haven't gotten them yet, so am beginning to wonder if we misunderstood. They really packed a lot of events in 3 days, I think they are planning to have another event next year.
I am going to try the coconut oil orally, will have to melt it first. My coconut oil is always solid, and after being in the fridge is like a rock.
Talk to you again soon,
Mary
0 -
Prayers for gmmiph and kat. As for the feet, i too wrapped them in a warm towel. for the body aches at least while on a taxane, claritin was recommended for me. with adrimycin I took a tylenol based product. And I hydrated until I thought I would float. Something else that helped immensely was fortified water. It as ph9+ whatever that means. Brands here in my area are: Aqua Hydrate. It has been a lifesaver because it helps restore electrolytes. I saw some at my infusion center and tried it. 10 months post the start of treatment I'm still doing it. At least 32 of my total ounces per day.
Just my little 2 cents worth of what worked for me.
0 -
HI, Valstim!
Glad you are continuing to improve, and better every day.
Reminding everyone about water intake is good, I too drink a lot of the alkaline mineralized water. Sometimes I am told I drink too much water, because my blood sodium levels will be low. But for the most part, water, water! I am trying to get into more of the green tea habit, for me that will be easier when the weather gets cooler.
My GP also advised me to take Claritin with chemo, I don't know how it works on pain and he couldn't explain it, but said it worked for some people.
Good to see you,
Talk again soon, Mary
0 -
Hello Valstim,
Thank you for your kind words. I am so glad that you find the thread an inspiration.
Keep well and keep happy.
Fond thoughts.
Sylvia xxxx
0 -
Hello Mary,
Thank you for your post and your kind words. I really do think you are a real asset to the thread and you make such a great effort.
I do hope you will receive all your notes and DVDs from the symposium.
It is strange how coconut is so much in vogue these days. I bought a jar of the solid coconut oil and used some to pan fry some wild Pacific salmon. It was fine, but I just preferred the extra virgin olive oil. I suppose it is just a question of habit. I then put the jar of coconut oil into the refrigerator and to use it from there was like chipping ice. I gave the jar to a friend of mine who uses a lot.
It is strange that you should mention that your coconut oil is always solid. I have looked in quite a few shops and have seen only solid – until today. I was in my local natural food store to buy a few things and there, lo and behold, on the shelf with the solid coconut oils was a bottle of liquid coconut oil. I asked the owner how this could be, because I was really puzzled. She told me it went through a special process to make it liquid. I shall let you know what I think. It came with a little recipe book. Like the solid oil, it can be used as food or on the skin etc. Watch this space!
By the way, the coconut water that is much in vogue is also good for hydration, as it contains the electrolytes that you mentioned. It is a far healthier way to get them than the powdered ones you can make up with water, as they have sugar in them.
The one thing I would like to know about coconut oil is whether, since it is a saturated fat, is it one of those fats that increases the cholesterol in your blood? Have you any thoughts on this?
I have had a very busy day today preparing for a directors' meeting here.
I have prepared and agenda and an outline of minutes, as well as a quarterly newsletter for the residents here, not to mention a budget for next year that serves to run the place. I am one of two volunteers running the place, but I am doing most of the work.
In a short while I am going to watch a programme running live from Churchill, in north Manitoba, Canada. It is the Arctic and full of Polar bears. This is the second episode of three. My friend, Carole, has just returned from there and is over the moon about it.
That is all for now. Please read the book by Professor Karol Sikora and then we can discuss it.
Many thanks for all that you do.
Love.
Sylvia xxxx
0 -
Hello Gina,
Just to let you know that I am thinking of you. I was surprised to learn that you have to stay over at the hospital for your chemotherapy. Here we go to the hospital, have the treatment and return home. It is a long day but at least you get back home.
By the way, I had absolutely no pain from the chemotherapy treatment and did not get offered anything like Neulasta, because I never had low white blood cell count.
I would prefer you just to call me Sylvia.
Wishing you all the best.
Sylvia xxxx
0 -
Hello adagio,
I am so glad you are having such a good time. Keep in touch and tell us a bit about New Zealand.
Fond thoughts.
Sylvia xxxx
0 -
Hi all,
Mommy Sylvia, Im still a little bit nervous. Today is my first chemo day. We went to the hospital yesterday for my room assignment and schedule. We also informed my MO's secretary who seems nice. We talked a little bit and she said usually it takes around 8 hours for the whole chemo procedure, i dont know if it includes the preparation time for the medicines and all, but she said to be at the hospital around 10 am. My MO ordered for an overnight stay for me for monitoring and just to make sure everything goes well. It is standard.
Mary, it is good to see you fully recharged after a short vacation. Yes, I guess we all need a break once in a while to get away from it all. Then, life continues again. I was feeling fine yesterday until my doc's sec said the procedure is about 8 hours. I got nervous again. Gosh, why does it take that long? She doesnt have a clue on exactly what they're going to do though so i thought maybe the preparation time is included in it. I am wondering if the onco nurse would just let the drugs drip on its own or are they gonna use some sort of a pump to push those in me. No need for a port says my doc. Neulasta, only when needed. I am just praying it all goes well.
Hi Valstim, thanks for the prayer and your important tips. I am glad to know that you are improving, i'm praying it continues forever. No more worries.
Hi Adagio. I like to visit New Zealand. It is one of my dreams. They say it is really beautiful. and Australia too. I wish.
Hi Cathytoo, I know you're popping in every now and then. I am also thinking of you.
Hi Kath, i hope everything goes well for us both. Prayers for you and me sister.
This is such a nice thread. I really am so glad i found BCO. I wish more support for it coz it is a big help for many.
Thank you mods and staff of BCO.
Wish you all the best,
gmmiph
0 -
Hello Michael,
I just wanted to let you know that I have read the link that you post from the Irish Times and that I found it most interesting.
Do you know what the drug Apr-246 stands for.
When it states that it can prevent the growth of breast cancer cells,I am assuming this must mean once you have TNBC. If not I cannot see how it can be known what kind of breast cancer a person is going to develop.
Please continue to post any links that you may find. They are so useful
What do you think of the UK post Brexit? How is your little dog? How are you settling down with dark night upon us?
Keep in touch,
Best wishes,
Sylvia.
0 -
Hello Tom,
I saw the lovely photograph of your little boy. He looks a bundle of joy. It brought back all the memories of your wife's breast cancer journey and your great support.
I would be grateful if you could post the information that you posted on the other thread on here as well so that everyone viewing keeps up to date with any new information.
What do you think of the information that Michael gave us about the drug APR-246?
Sending you and yours best wishes.
Sylvia
0 -
bloods today and second taxol tomorrow. Muscles and joints still sore and pins and needles in my quads! Been using Panadol osteo 4 to 6 hourly and gentle except use. 10 to go after Friday seems so far away!
Cheers
Kat
0 -
gmmiph...Hope your first chemo went well. I noticed that someone mentioned taking Clariton go any aches and pains. I did this for a full week after each infusuon. I'm assuming it worked because I never had an achy problem
0 -
ALT continues to rise now 48. Next dose of taxol tomorrow. Very scared that's something is going on! Has anyone else had that problem on chem
0 -
Hello Kath,
I hope all goes well on your weekly Taxol. Just concentrate on one chemotherapy session at a time. Instead of thinking ten more to go, think positively and tell yourself that two sessions are now behind you as of tomorrow, and this journey will soon be over.
As for the aches and pains, if you think they are related to your AC treatment, it is something you should talk to your oncologist about, because we are not doctors here and cannot give an answer.
All these aches and pains might have nothing to do with the chemotherapy, since you had problems with them before.
Be positive and remember this chemotherapy treatment and any radiotherapy should bring you into no evidence of disease.
As for your ALT (Alanine transaminase), which is a sign of liver health, that is also something you need to talk to your oncologist about. You say it is 48 and too high, so what have you been told it should be and have you been told how to lower it?
You must stop worrying. It does not do any good and it does not solve any problems.
Psychologically if you think the worst, then you can bring it on. For example, Professor Karol Sikora said in his book in the chapter on chemotherapy, that if you think you are going to have nausea, you end up having nausea. He said that it could get so bad that the sight of your oncologist in the supermarket, off duty, could make you feel nauseous.
Think always of the glass half full not half empty.
Fond thoughts.
Sylvia xxxx
0 -
thanks Sylvia u always seem to know how to calm me down. My ALT is only mildly elevated at 48 which could be due to rgecrcexcise I have bee doing.we have been having some mild sessions in the pool with the cancer group and I thought they may help but it is known to real ease ALT into the bloodstream. I need to stop think worse case scenario which is the nurse in me I think and start concentrating on a good prognosis. I need to have faith in my drs take one day st a time and get through this chemo. So very hard tho when the nurse in me takes over
Cheers
Kat
0 -
Kathseward......I am also a medical professional (nursing/hematology). I ALWAYS diagnose myself and "thought" I had some type of cancer long before I was diagnosed with breast cancer. Many years ago a doctor told me "You know enough to scare yourself to death but not enough to calm yourself down." Right now I've had a pain in my shoulder that I'm "sure" is a bone met‼️ My point is that we do the most damage to our mind and body when we think the worse. You need to be positive and strong during your treatment or else your body will finally give in to your mind's fears and anxiety. I'm sure you know about the "mind/body connection". It's real and works both ways...positive or negative. Put all your fears to rest and have faith in the treatment. I know it's easier said than done...BUT...it can be done
0 -
Sylvia,
What is the name of the Professor Sikora book? I looked him up on Amazon, he has many books and they are very high-priced at this time.
Talk to you soon, Mary
0 -
Hi Sylvia
He is a little sweetheart! He is beginning to get quite cheeky though, he is very cute and boy does he know it!
I read the paper about APR-246. It is interesting. To be quite honest though, I think the press report probably made more of it.
APR-246 is another name for a variant of a drug called PRIMA-1. PRIMA-1 works by converting mutant p53 protein back to its normal form. The rational is that many cancers have high rates of p53 mutations and this allows the tumor to grow. By reverting the mutated p53 protein back to normal, the cancer cells are induced to undergo apoptosis (cell death). I believe that PRIMA-1 in is phase II trials and I have read one study where it was used in prostate cancer(?) and there was some degree of effect. I don't think it was the magic bullet though. But the drug was well tollerated and there is lots of research trying to improve it.
The recent paper has examine the effects of APR-246 against breast cancer cells in the lab, but not in animals. Alas, lots of compounds kill cancer cells in the lab, but do not work in more complex systems like animals and humans. Like I said it is an interesting study, certainly highlights the case for testing PRIMA-1 in a clinical setting, but the impact of the results have been slightly jazzed up at this stage.
The recent study I have found interesting is about a drug called tetrathiomolybdate (TM) that is normally used to treat people will too much copper. In this study TM appeared to have significant effect on preventing recurrence. The only criticism i have is that the study was single armed, so there was no control group (i.e. not given any drug). But the data was very convincing and the same study also showed data using mice that has been injected with breast cancer cells. The mice given TM had massively less mets that the control mice (almost zero). The study is by a Dr Linda Vahdat who is well respected in breast cancer research. I am speaking to my wife's oncoloigst about it.
I need to dash, let me know if you have any more questions - I am more happy to answer to them
Love and hugs to all
Tom
x
0 -
Hi Sylvia,
I'm also TNBC and in the UK - second time around and nervous that things aren't quite right. I am currently waiting for some more referrals.
i too having been having real problems with osteoarthritis and osteopenia. It really started to come on strong whilst I was having Docetaxel/Taxotere. They say they are not connected but I take that with a pinch of - don't know about that. The longer people are surviving the more permanent side effects from treatments start to come reveal themselves. In 1999, I was told I'd be lucky to survive 15 years.
In answer to one of your questions (I hope I am not replicating) - I don't think they concern themselves with stage with TNBC as it can grow so quickly - so they concnetrate on the Grade - how aggressive it is.
I agree that there is not enough education here regarding TNBC; I've even found this in clinic. Since my first and second time there is so much information out there it shouldn't be like this. I am constantly having to tell people - and this even included an oncology registrar - as some people are totally ill-informed of these types and the lack of treatments. I hope next year to write some articles especially as when NICE revised their access to drugs on the Cancer Drugs Fund, they took away drugs which showed promise for TNBC. Many TNBCs present at Stage 3 and 4 and they aren't considered worth the money. 3 of the 5 drugs removed were specifically used for TNBC. i think this is shocking. We might not pay for treatment but neither are we allowed access to treatments. I really feel more needs to be done here for TNBC.
Congratulations on being 11 years 4 months out.
Barbed.
0 -
Hello Mary,
The book by Karol Sikora is entitled The Street-Wise Patient's Guide to Surviving Cancer. It is very recent-June 2016. I bought it in paperback on line at Amazon for about £9. If you look back at some of the recent posts, you will see that I outlined the first four chapters in a post to Val. She said she was having trouble finding a non-expensive edition of it. I seem to remember it is also available on Kindle. It is not a thick book, just 144 pages. On the back cover under the heading it says How to be an active, organised, informed and welcomed patient. Karol Sikora is a Professor of Cancer Medicine and consultant oncologist. He is Dean University of Buckingham Medical School, Chief Medical Officer, Proton Partners International. Former chief, World Health Organisation, Cancer Programme. The publisher is EER.
This book tells you how to survive, and live with, cancer. It offers:
Short, sharp practical guidance.
Shows patients how they can take control of their care.
Is essential to patients and their family.
Shows you haw to get the system to work for you.
Gives 100 advisory websites, with expert notes.
Is absolutely up to date.
I hope this helps you to locate it.
This link might help.
https://www.amazon.co.uk/Street-Wise-Patients-Guid...
https://www.amazon.com/Street-Wise-Patients-Guide-...
That is all for now.
Love.
Sylvia xxxx
0 -
Hello Cathytoo
I just wanted to welcome you warmly to our thread.
Hello Tom,
Thank you for all that useful information. I shall post more later.
Hello Barbed,
Thank you for a most interesting post and I would like to give you a warm welcome to our thread. I am so glad to have fellow Brit on board. I shall write a more detailed post tomorrow when I have more time to do your post justice.
Many thanks to make this thread so lively and interesting.
Best wishes
Sylvia
0 -
Hi to all,
Thank you so much for the prayers and well wishes.
I am still in the hospital, 5 am nov. 4. all went well, it took about 5 hours for the actual administration of 2 pre-chemo meds and the FEC. the onco nurse said she slowed down the flow of the FEC so that it wont be too hard on my vein. i will be out in about 2-3 hrs. No side effects so far except for the red pee.
ok i got to get ready for the discharge, bills and all,
talk again soon,
gmmiph
0 -
Hello gimmph (Gina),
I was glad to know that you have got through your first session of chemotherapy with FEC. Regard that as your first victory in your chemotherapy journey.
Keep drinking to flush out the drugs and the red urine will soon vanish.
Take the medication that you should be given to take for the first few days to avoid nausea. Rest as much as you need and try not to worry about anything.
We are all here for you.
Fond thoughts.
Sylvia xxxx
0
