Calling all triple negative breast cancer patients in the UK
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Hello Jacqueline
Thank you for posting more details. It is hard to take everything in when first diagnosed but you will soon put it all together. I think it is very important for the patient to be in charge and to be leading rather than following. I found it a good idea to write down questions before appointments with the oncologist or the breast cancer consultant and make sure you make very good use of your breast cancer nurse, who should be seeing you through all this and available on the phone when needed. It is a good idea to take someone with you to your appointments and to take notes. Two lots of ears are better than one and it is good to write things down as information can slip your memory.
Now that we have more of your details I can clearly see the drugs that they are using for your chemotherapy, but I am not quite sure which combination you have started on. The combination cyclophosphamide (Cytoxan), epirubicin (Ellence), fluorouracil is quite a common combination that is used. Are you also having docetaxel (Taxotere) at the same time as this, or will you be having three month of what is abbreviated FEC and then three months of Taxotere by itself? Some patients have just CE and others have the added fluorouracil.
I had just epirubicin and cyclophosphamide for three months on a three-weekly cycle and then had docetaxel for three months on its own.
I found that my hair fell out pretty quickly but I always had a few strands of hair at the back and stubble. My hair started to fall out before I went for my second session and I went to that session wearing my wig, which I still have. I used to find loads of it on my pillow. I wore a nice turban during the day and at night but always wore my wig when I was going out. When I had lost all my hair I used to wash my scalp gently in Baby Johnsons shampoo and massage with pure avocado oil (the type used for cooking and salads) because it got quite dry and formed dry crusts.
When you have your next session I would go straight back home afterwards if I were you, as your body will have just taken a beating and you will need rest and peace and quiet. Start drinking that water.
My breast was very swollen as well when I was diagnosed. I was given a mammogram and my whole breast was bruised blue.
When I was first diagnosed my emotions were all over the place and I was teary all day at the hospital as I went through all the procedures, mammogram, ultrasound, core biopsy and a final talk with the breast cancer surgeon. That night I really cried, but I must have got everything out of my system, because I did not cry again. I saw the breast cancer surgeon and said I was not going ahead with the treatment and did a lot of research and reading before I finally went back. This is not something I would advise to anyone. Take time to absorb everything but get on with the treatment.
Make sure you take those anti-nausea meds that you will be prescribed after each chemotherapy session. I had no hint of any nausea or sickness throughout my treatment, but perhaps I was lucky. It is important to eat as normally as you can, because you need to keep your strength up. I started drinking decaffeinated green tea before I started my treatment and continued throughout it. I also had ground up flax seeds. In truth, when it comes to nutrition, I do what I think is best for me. I do not take notice of the medical profession as they are not interested in food as a natural medicine. I also took vitamins and immune boosters throughout my treatment. I am still doing all this nine years on.
As for problems with constipation I had none, but I had prunes and dried figs throughout.
That is about enough for today.
Thinking of you and sending very best wishes.
Sylvia xxxx
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maryna8 - when I was on taxol (somewhat similar to taxotere) I was absolutely paranoid about getting neuropathy, so I iced my feet during chemo and took L- glutamine - I also suggested to my MO that I would quit the taxol just to avoid the neuropathy - she didn't like that idea, so she reduced the does to 80% for the last 2 treatments. Perhaps that is something for you to consider.
Jackpot - awesome news - now you can breathe more easily and maybe even have a little celebration with a glass of wine! You must be so relieved.
To everyone else, have a good weekend, and for those going through chemo, I hope your side effects are minimal. Keep looking forward - it will end one day!!!
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Hello maryna8 (Mary)
Thank you for your kind words about your photographs. My husband posted them for me and says that all you have to do is click on the eighth icon where you write your posts and then follow the instructions. He found it rather slow but it does work. Try it as it is so nice to have photographs on the thread.
I was glad to know that you are not doing too badly on the Taxotere but I do know that neuropathy (peripheral neuropathy) is a problem. My oncologist told me it is definitely caused by the Taxotere and there is no cure. I saw my GP about it and she also said there was no cure. I went to see a podiatrist a few years ago and she carried out tests on my feet and said it was neuropathy and nothing could be done about it. Sometimes it really affects me, but it is hard to describe. It is a numbness and stiffness in the soles of the feet and in the toes. It is almost as if I am walking on crushed stiff paper and the soles feel rough even though they are in fact well looked after, well moisturised etc. I find great relief by soaking them in a bowl of warm water with plenty of salt and bicarbonate of soda. I use a foot cream known as CCS Foot Care Cream. It says on the tube that it is used by podiatrists. I alternate it with Dead Sea Spa Magik Rich Moisturiser. Recently I started having pain in the joint of the big toe on my left foot and was diagnosed with osteoarthritis of the toe by a podiatrist. It bothers me most in hot weather and when I have been standing a lot. I do not know how you are supposed to treat it but I just put ClearZal pain relieving gel Cooling Cryotherapy for sore muscles joints sprains and strains. I do not knw whether the osteoarthritis has been caused by the neuropathy cause by the Taxotere or whether the Taxotere has caused it.
Keep looking forward, Mary, and we shall get you through all this as well as Marymargaret and Jacqueline. Let us not forget Carolben going through treatment for metastases.
Take care and best wishes to you and you husband.
Sylvia xxxx
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Hello Michael
I have just clicked on your link and been reading that interesting article about sandalwood. It is a most interesting theory about olfactory cells in the skin. I am not sure what sandalwood smells like. Have you been out looking for some?
Usually I do not like perfume smells and buy everything unscented. However the flowers nemesias that I mentioned a few posts back I do like with all their different smells, especially the vanilla. I have them only outside as I cannot have any plants or flowers in the apartment because of Raymond's allergies.
How is Alex doing? I was wondering whether he had tempeh on his vegan diet. It is a fermented soy product and is supposed to be healthy. I buy it from time to time and have it in a stir fry.
I hope you are having a good long weekend.
Best wishes.
Sylvia
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Hello Maryna8,
I was just going to sign off when I saw this notice on the forum ASCO Develops New Guide Lines Addressing Issues faced by cancer survivors.
They are going to address 18, but they introduced 3. They are NEUROPATHY, FATIGUE, and ANXIETY and DEPRESSION.
Have a read and let me know what you think.
Fond thoughts,
Sylvia.
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so glad Eve's home MaryMargaret, what a blessing, accept lots of help!
Thanks for your kind words, Normandee, I read good things about the Carbo/Gemzar combo, but I'm doing Cisplatin, not Carboplatin as my onc says studies are showing that Cisplatin may be more benificial for tnmbc. I need t read up more on the Cisplatin.
Lineal, thank you for your words, I am scared for the new chemo - I see they've got me on Emend, the big guns for nausea, so am not sure what to expect. However, I'm sure no chemo can be worse than the AC! But I am strong (it's soooo boring to be a victim) & I have to find the balance between wanting to be superwoman and accepting I have also honor my body & let it rest. And my mind!!
Jackpot, I hope the core biopsy report is positive, nice to hear you feeling positive too. I believe that if I feel positive, then even if the results are not what was hoped for, then at least I had that period of positivity & hope. Does that make sense?
Sylvia, your gardens are gorgeous - we also get the bottle brush, it's one of my favorites! And thank you, yes I hope this chemo will be effective for a long time. I'm still reading The Emperor of all Maladies, have to limit how much I read, it's pretty hectic, but fascinating, & written in language the layman can understand. Otherwise I read "5 Segments of an Orange" by Joanne Harris (she wrote Chocolat", which was lovely. I really need to go online & get 'you need humor with a tumor' and C is for cancer. I'll also look at the other book you recommended - Beat Cancer (see how far my book budget will stretch!)
I met a man who had cancer start in his neck (not sure what kind) then spread to his lungs - also many small nodules all over, like I have. Anyway he went the chemo and medical route for 10 years & the nodules are still there, so he decided to go the alternate way. He went to Brazil to see this spiritual healer called John of God, he's changed his diet to no sugar or carbs, also is under care of an Asian healer with his medicines. He was due to have a scan, but put it off so he could give this new way time. So, of course, I'm fascinated to hear how it goes with him. Thank you for the book suggestions, please keep them coming, especially the ones with humor in them. I'm trying to not take this all too seriously all the time, I have to laugh too!
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Hello Carolben
It was so nice to hear from you and to know you are keeping upbeat about everything. That is definitely the way to be.
Thank you for the compliments about the grounds in the apartment complex where I live. I was interested to know that you also have bottle brush.
Do not push yourself too hard over the reading of the Emperor of all Maladies. Just read it in small bits and when you feel like it. The other books Tumour with a Humour and C is for Cancer make much easier reading and I am sure you will read them pretty quickly. On line is definitely the way to get them as they are much cheaper. As for Beat Cancer, I found it a most interesting read and I am still dipping in and out of it. The good thing about this book is that it is 2014 so right up to date and since it is written in a ten step plan you can read any parts you like. I found step one more challenging as it is all about how cancer develops, how it spreads, when things go wrong, how good cells turn bad and all about the new science of epigenetics. There are interesting bits about metastases. Step one is entitled Inform Yourself. The second step was not too bad and is entitled Find Your Balance. I was particularly interested in the section on the three levels of healing, which stated that if we are to beat cancer and stay well in the long term we need to understand that there are three levels of healing that we need to address. The first level is the conventional treatment of cancer and how surgery, radiotherapy and chemotherapy deal with the overt symptoms of cancer. The second level is about addressing lifestyle factors such as diet and exercise. The third level is about using talking therapies and mind/body treatments such as acupuncture, yoga and meditation. These will help reduce stress and underlying problems in our lives, social, emotional or spiritual. What this means is we need to integrate conventional treatment with other treatments to restore a balance. There are more details about all this in the book.
Step three is entitled Choose the Right Conventional Therapies for you. This is all about cancer treatment from diagnosis to the end of treatment.
Step four is entitled Know Which Complementary Therapies Can Help. This has a lot of interesting information and I need to reread it.
Step five, Eat to Beat Cancer, is the step I have been concentrating on as I really think good nutrition is at the heart of everything. If you look back at the posts you will see that I posted a shortened version of the details in this step not that long ago.
I think you have enough to be going on with this.
I think on this thread we are all doing our best to eat in a healthy way.
I was thinking of you yesterday when I bought some new season tangerines from South Africa. They are absolutely delicious.
I have been looking at step six, entitled Protect Yourself with Exercise, and I found it very useful to have a summary of the contents on the last page of the step, entitled In a Nutshell.
* Exercise helps to protect against cancer and can aid recovery in patients. It also has numerous other health benefits, including protecting against stroke and hear disease, helping to maintain strong bones and weight control.
* Appropriate exercise is safe and beneficial for all but a small minority of cancer patients. Always talk to your doctor before embarking on an exercise programme.
* Start with a small amount of exercise, programme it into your routine and gradually build up.
* Find an activity you enjoy and can easily fit into your life.
I have to stop now. I will post more later on.
Fond thoughts.
Sylvia xxxx
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Hello Carolben again
I am sorry I had to end abruptly but I had someone buzzing my door.
I was very interested in what you had to say about the man you met with nodules in his neck. I do not blame him for trying some alternative treatment. I shall be very interested to know how he gets on.
First of all, we must not mix up alternative and complementary. Complementary is of course the treatments such as aromatherapy, head massage, meditation, yoga etc. I know that the orthodox medical establishment frown on anything alternative, but if you have had ten years of orthodox and still have nodules, you might as well try something else. At least with the orthodox he has had ten years of life.
I think if that were me in that situation, I would get the results of my scans first.
When I was first diagnosed I delayed the orthodox treatment for some time, but I would not recommend this to others. I did a lot of reading and I consulted a well known (now deceased) herbalist named Gerald Green and he prescribed wormwood supplements and astragalus powder. In addition, he sent me a small booklet on nutrition and I followed that but I was already doing most of it. It was a good experience with him because he wrote personal letters and we talked on the phone.
Through my breast cancer consultant I also got a referral to a consultant at the Royal Bristol Homoeopathic Hospital who had been a cancer specialist and had changed to homoeopathy and had many patients referred to her. She told me she definitely could not cure my breast cancer and that I should have the orthodox treatment but she would help me at every stage with homoeopathic medicine. She started me on oral Iscador straightaway and I took it throughout my orthodox breast cancer treatment. She gave me, in addition to the Iscador, appropriate medicine during chemo, surgery and radiotherapy. I was not ill at all during my treatment. Did the homoeopathy help? I stayed with all of this for five years and then she thought I was ready to be discharged. She used my case for her lectures to her students.
When I started the orthodox treatment I did not continue with the herbalist, so I did not have the wormwood but I continued with the astragalus and I still take it from time to time now. It is well known in Chinese medicine as an immune booster.
Before I started orthodox treatment I also saw a well known nutritionist, just for a consultation, and got lots of information about nutrition. It was through her that I started taking bitter apricot kernels. Again, she said only orthodox treatment could deal with my problem. I think in the end we just have to do what we think is best for us. I am still taking the apricot kernels nine years on as well as green tea.
I do hope all will go well with the Cisplatin. I shall do a bit of research as well. Have they told you what the side effects are? I know someone who is going through metastases with triple positive breast cancer and that has been proving quite a challenge. It is also very aggressive.
Keep posting and let us know how you feel.
Fond thoughts.
Sylvia xxxx
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Sylvia - can you tell me where you buy your bitter apricot kernels and in what form do you take them e.g. do you chew them or swallow them, and are they difficult to take? thanks I plan on doing some more research into this also. I am currently taking modified citrus pectin which is supposed to help prevent metastasis - a friend of mine told me about this. It is also used for getting rid of toxic metals in the body like mercury, lead etc.
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Thinking of all of you. Fight on ladies.
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Hello adagio
It was nice to hear from you.
I get my bitter apricot kernels online at Amazon (UK). The brand is Creative Nature Bitter Apricot kernels and they cost £10.50. It is quite a large box (300 grms) and lasts quite a long time.
I usually eat about 15 to 20 a day and sometimes have a day off and eat none. When I was going through treatment the nutritionist I saw recommended about 30 a day. It is up to you how many you eat but you may want to start with just 5 a day and build up to 15. I eat them like nuts so I chew them. I would not think swallowing them would very good. They do have a bitter taste, which I love. I often have them with a mug of green tea. I usually eat 5 at a time but not literally five in my mouth. I chew them one at a time.
I was interested to read that you are taking modified citrus pectin. What form are you taking this in? I have read that pectin is very good for you. I try to eat an apple a day and am always eating citrus fruit.
How are things going with you?
Fond thoughts.
Sylvia xxxx
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Hello Susan
It was nice to see you popping in and I love your illustration.
How are things going for you? Are you spending a lot of time in France?
Thinking of you and sending fond thoughts your way.
Sylvia xxxx
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Adagio,
You and I are on the same page regarding neuropathy, the difference is that I already have it to a degree. I do have the ElastoGel slippers, but did not have them for the first treatment. I did talk to MO before last treatment and said much the same thing as you did. I was almost ready to discontinue treatment to avoid making it worse. He did cut my dose to 80%, I can't tell a lot of difference. I have 1 treatment left, I am going to speak to him again Friday before my last dose which is scheduled for next week. I'm not sure what is going to happen. Of course I want my best chance at being cancer-free. It's just that nobody can tell me what my chances are that this will go away, get better or get worse. The nurses say it usually gets better, but doesn't go away.
Sylvia pointed me to an ASCO article on conditions which can linger after chemo; depression, fatigue, and neuropathy. They have done some studies on the neuropathy, apparently not very large ones. Basically what they have discovered is that there is no treatment that works for everyone; there are 2 pills they recommend and 1 cream, but they only work for some people and usually in a limited fashion. My General Practitioner has recommended Vitamin B1 and B6.
I wish you the very best!
Mary
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My waterfall....contains too many plants and 1 fat goldfish.
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Sylvia - I am doing fine. I see my oncologist in 2 days time, and I am hoping for good news from her. I always dread the appointment on one level, but on the other level, it is reassuring to have the OK and know that I am having good care from our medical system. I will let now how my appointment goes. I had as cataract removed from my right eye almost 4 weeks ago and it is healing very well indeed and it is great to be able to see so much better. My shoulder is not perfect by any means, and I still have to do a lot of physio exercises, but it is so much better than before and I sleep so well now which is a blessing in itself.
We are having scorching temperatures here and my vegetable garden is bountiful so am enjoying lots of kale, chard, salads etc. If I am what I eat, I should be looking like a leafy green right now!!
Family life is way too busy and a bit stressful right now, so I am very aware that I have to remember to take care of myself and to breathe in and out and take the time to simply relax. Daughter #1 is getting married in 3 weeks time - she had a bad accident just two days ago and has broken her collar bone so she is in a lot of pain and can't do anything right now - she will need a very speedy recovery so that she put on that beautiful wedding gown that she has. Life is so unpredictable, isn't it?
The modified citrus pectin is a powder that you take in water or juice - I use water because I don't drink juice. It is not pleasant to take, but I am only going to do one container of it which lasts a couple of months - it is quite expensive to buy. I like to try different things, but am trying to reduce what I take - my one consistent thing has been the medicinal mushrooms,which I have been taking since my diagnosis which is almost 2 years ago. Actually,we were in Rio de Janeiro when I discovered the lump in my breast, so it was with quite mixed emotions that I watched the World Cup because it brought back many of those early frightening moments.
Hope you are well - talk soon.
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Maryna8 - my MO prescribed gabopentin for me, but I never did take it - not a fan of medications. I took the chance with lower chemo doses because I valued my quality of life after chemo - these decisions are not easy! I also took a Vitamin B complex - I have heard that all the B vitamins are very good for any nerve problems. Wishing you all the the very best in terms of the neuropathy, and hopefully you will be one of the ones that gets completely better from it. I went to acupuncture 2 times per week because it helps neuropathy also - I was very fortunate that in my city here we have an acupuncturist who deals only with cancer patients and he is very skilled.
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Hello adagio
Thank you for your posts. I shall respond later as I have to go out now.
Fond thoughts.
Sylvia xxxx
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Hello adagio
I was glad to know that you are doing fine and I hope that all goes well when you have your check up on Friday July 18th. I know what an anxious time this is, so we shall all be thinking of you. Let us know how you get on with the oncologist.
It is good news about your cataract operation and that it has improved your eyesight and I do hope that your shoulder will slowly but surely get back to normal.
I was glad to know that you are eating all those healthy green vegetables from your garden. Keep up the good work.
I was sorry to read that your daughter had had an accident and broken her collarbone. I do hope everything will be in order for her wedding day and I do hope everything goes well on the day. Try not to get too stressed.
I was interested to know that you have been taking medicinal mushrooms for two years. Are you taking them in tablet form? I try to eat shitake mushrooms from time to time but do have other mushrooms in my diet quite a bit. I suppose we all have food in our diet that becomes a regular thing. As I said, mine has been bitter apricot kernels and decaffeinated green tea for over nine years. I also eat a lot of raw fresh nuts, especially almonds, Brazils and walnuts. Like you, I do not drink fruit juice but do eat lots of fruit especially blueberries and raspberries. I try not to have too many pills but I do take strontium citrate, calcium citrate and magnesium citrate along with soft gel vitamin D for my osteoporosis.
I can understand the emotional impact of watching the World Cup taking place in Brazil when that was where you discovered your lump. With me, I often wonder whether I would still have had breast cancer if I had not come to Devon, given that the breast cancer consultant told me in 2005 that the tumour probably started three years before, which was when we moved to Devon. Moving home is a big stress factor, so who knows?
Take care and be sure to let us know how you get on.
Fond thoughts.
Sylvia xxxx
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Hello Mary
Thank you for your lovely photograph. I thought everything looked beautiful and was most intrigued to spot a Buddha statue. I see them everywhere in the shops now and in fact one of my neighbours has one of them in his lounge. He told me that his son had bought it for him to make him feel good.
I have been thinking of you and wondering how you are getting on.
The same goes for Marymargaret, who I suspect is being kept very busy with her new baby, Evie, and the chemotherapy treatment.
The same goes for Jacqueline. I hope all is going well with you and that you will keep in touch.
Greetings to Jackpot (Gill). Have you had any news about the lump that is fat necrosis? Is it going to be removed?
To everyone in our small group of regular posters, I hope you are having a good week.
To the many people viewing, do not be shy about posting if you need any help and comfort.
Thinking of you all.
Best wishes.
Sylvia xxxx
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Hi Adagio,
Good luck with your check up, hope all is ok.
I have my yearly mammo on the 24th. I am always nervous.
I do hope that your daughter will heal quickly. Have you been busy with the wedding...... it is such a wonderful memory to have. There was just myself and my daughter on the day that she went wedding dress shopping and I wanted to tell everyone how beautiful she looked. I sat in the shop with tears running down my face and rang my sisters in England just to share the experience.
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Hi Sylvia,
I read the ASCO articles with interest.
I took part in a study re long term fatigue and how best to live with it. I haven't heard what the conclusion or plan of action will be.
The problem, I think with any long term affects, is that they can become a vicious circle. The fatigue can lead to depression and also definitely to constant anxiety because you think that it is so unnatural... that surely it must be a symptom of the cancer returning.
I do agree that exercise in a social setting is one way of managing any one of the three. I find that my Tai Chi class helps enormously, mainly because of the small group of people that I do it with.
The biggest problem I find, is not accepting my own limitations but getting friends and family to. On several planned pleasurable outings I just seize up and can go no further. It can make you isolate yourself from others and I have stopped doing some things or simply refusing invitations.
I was at the centre yesterday and one of the women who is quite a new member told us she is TN. Surprising that in such a small area there are 3 of us.
Today is Damian's birthday and he is watching the British Open on TV. Cheering on Shane Lowry and Rory Mcilroy. Later we will go out for dinner to a restaurant by the sea.
We are trying to plan a trip to America and have decided after a visit to Damian's sister in Virginia that we will drive down to South Carolina and Georgia. I would appreciate if anyone knows any reasonable hotels in Savanah or Charleston they may let me know.
We spent a couple of days in Dublin and saw some amazing street musicians in Temple Bar . I felt like dancing in the street.
Weather here is overcast and humid, I think that there is thunder forecast, fingers crossed that it wont happen.
Healing thoughts to everyone
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hi Sylvia
My follow up apptointment is on Wednesday to discuss options following last weeks results but I'm hoping they suggest to remove it because it's quite large and painful but my main concern is it could hide another lump or I would just think it was part of the fat necrosis and not get it checked so I'm going to be quite determined that I want it gone,
We had some bad news regarding my nephew, he was riding home the night before last when he was knocked from his bike by a drunk driver who then decided to just drive off and leave him there, it was gone midnight but luckily someone found him, he's got a double skull fracture and a fractured spine and facial injuries and he's got to have surgery on his face and spine....it makes you wonder what kind of world we live in when someone can do that and drive off not caring if they're alive or dead, the good news is he was arrested a short time later and has been charged.
Adagio....is it today or tomorrow your onc apptointment? I hope it goes well they are scary aren't they, which mushrooms are you still taking? Are they a supplement?
Carolben....I've read about john of god and would love to visit him (any excuse for a holiday) in fact a pyschic told I was going to see him ( don't know if you believe in all that) but I'm really interested to see how that goes with the man you met
Maryna8....loving your little pond and Buddha...just to let you know I iced my ankles and wrists and took a vitamin b complex every day infact I still take vit b and I got no neuropathy in hands and feet, I don't know 100% it was down to that or whether I wouldn't have got it anyway but worth a try
Take care
Gill
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Adagio,
Well, it looks like my last 2 treatments are also going to be reduced; I already had one reduced, another next week. It is a hard decision, but it wasn't too difficult because I was having a lot of side effects. And I don't know if they are going away or not. Well, I shall hope for the best! I have heard of gabapentin, it is one of the drugs that works for some but not all. And some said it's too sedating.
My husband had cataract surgery, he said it was a great result. I hope yours is very good too.
Congrats on your daughter's upcoming wedding, hope the arm is manageable by then. I suspect it will be and she will be a beautiful bride.
Best wishes! Mary
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Hello linali (Lindsay)
I was glad to know that you found the ASCO article interesting. I think it is useful to keep an eye on any information that comes flashing up on this forum.
I was interested to know that you had taken part in a study about long term fatigue and how to live with it. I wonder what is understood exactly by long term. How many years are considered long term?
I can understand how, if fatigue after cancer treatment is affecting you to the extent that you cannot get through daily life in a normal way, this can lead to depression and anxiety. I know it is difficult but I think somehow you have to be strong enough not to let the fact that you have had cancer take hold of you. It is difficult for me to understand fully what this kind of fatigue does to people because I have not suffered from it. I have loads of energy. My husband probably thinks I have too much.
I was glad to know that you enjoy your tai-chi in a small group. You must be greatly benefiting from that and have probably made some good friends. I am not into group exercise or group therapy at all, but I do understand how it can benefit others.
In your daily life you can only do as much as you feel able to do and your friends and family will have to realise that and accept it.
I was interested to know that in your group at the centre there are three of you with triple negative receptors. It must be very interesting to compare notes. Do you all have the same kind of breast cancer? I am always very interested to know what kind of cancer those with triple negative receptors have, because sometimes I think the kind of cancer may be more instrumental in the outcome than the receptor status. Are you all in the same age group? It is of interest because we keep being told that younger women are more likely to have triple negative status. I certainly see a lot of this on Calling all TNS.
I do hope you had a nice birthday meal with Damian.
I do hope, also, that you have a good trip to the US. When are you thinking of going? I am sure it will be a good experience in that part of the US and I do hope someone will post in with information that will be helpful to you.
The weather here in Exmouth is quite cool after a stormy night with thunder and plenty of rain. We needed that rain. The south-west here always seems cooler than London and the south-east where they have been sweltering.
On Thursday Raymond and I met up with the nurse who really adopted me when I was first diagnosed. We have remained friends ever since. We had a lot to talk about as we had not seen each other for a while. She used to be a theatre nurse in orthopaedics before becoming interested in cancer. She was instrumental with a few others in setting up the FORCE cancer charity centre in Exeter in the grounds of the hospital where I went through my treatment. She stayed with me throughout my treatment and was like a guardian angel. She is full of life and makes you feel good. My oncologist is also the president of the FORCE charity cancer centre.
That is about all for now. In about half an hour I am going to listen the Any Questions, followed by Any Answers, on the radio. I am always very interested in current affairs. This morning I watched Dateline London on BBC News 24. It is only on for half an hour but is most interesting. There are well informed journalists on it, mainly from foreign media. Today they were discussing the downing of the plane over Ukraine, the fighting in Gaza, and the reshuffle in our Tory government. Have you been following any of this?
Wishing you a good weekend.
Fond thoughts.
Sylvia xxxx
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Hello Gill
It was nice to hear from you. I agree with you about that lump. I think that if it were me I would also insist on it being removed. Otherwise it is going to play on your mind.
I was so very sorry to read about what happened to your nephew and I do hope he will b alright and make a full recovery. As you say, it is appalling that a drunk driver can do this to an innocent cyclist and then just leave him there. I do think that we are not severe enough on drunks and alcoholics. When I was at A & E with my brother back in May, I was appalled to see drunks being brought in for treatment and discovered they get priority! We had been waiting for hours and it must have been approaching 11 pm when a drunk was brought in accompanied by two police officers and was sitting just in front of us. I went straight to reception and said I was not going to the back of the queue for the benefit of drunks. We then got called in immediately to see a consultant.
I do hope the person who did that to your nephew gets what he deserves. Knowing the way this country works today, the powers that be will probably be too lenient. Everything is so corrupt.
Thinking of you and wishing you all the best.
Sylvia xxxx
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Hello everyone
I am just popping in to say I hope you all have a good weekend and to say also what it a pleasure it has been this week to read all the interesting posts. Keep up the good work.
I saw this tree when out with my husband in the car and was going from Exmouth through Budleigh Salterton. It caught my eye and I wondered what it was. Has anyone any idea?
Best wishes.
Sylvia
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Hi, Sylvia!
I am glad you like my waterfall. I have a Buddha out there, and a Hindu goddess, and 2 statues of St. Francis of Assisi, very interdenominational, you might say. The one that shows in the picture is there because it is very heavy and anchors the top stones nicely.
I read the ASCO article on peripheral neuropathy, it seems the studies show there is not much to be done for it with conventional medicine. My General Practitioner has recommended 100 mg. of B1 and B6 daily, I see that Adagio does acupuncture. I would like to try that if I can find a practitioner. Living very rural as we do it's not always easy to find these amenities. I also saw that fatigue and depression can be chronic. It reminded me of something my sister-in-law told me. She went through breast cancer and chemo 20 years ago. I asked her how long it took her to get back to normal. She said "Well, it's a new normal."
I am having my last chemo next week. I am having a reduced dose, and my last session was reduced as well. It's either that or I'm not sure I could go through with it. Besides the neuropathy I have been depressed and anxious, my eyes are runny and blurred to the degree that I can't even drive at times. They tell me that will resolve, I certainly hope so. As I said, we live very rural and driving is a necessity. I have been prescribed an anti-depressant and an anti-anxiety medication for the first time in my life. I think the problem is mostly my worries about being able to take care of my husband when I'm feeling down from the chemo. The Home Health nurse is a comfort, she comes 2 days a week. But no matter who is here, when they leave it's just the two of us and it is stressful. I have done every deep-breathing exercise I know how to do. The best remedy seems to be keeping busy, except of course when I'm too tired to be busy! It seems from what you have said that you had a relatively easy time with your chemo, that was a blessing.
I don't know what your mystery tree is, the variegated leaves are very attractive.
I am going to have to go out now for a short trip, I hope my eyes will cooperate with driving today. I never know till I try.
Talk to you soon, Mary
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Hello Mary
I was glad to know you had read the ASCO article on peripheral neuropathy resulting from chemotherapy treatment. As I have said before, my oncologist told me it was the taxanes that caused this (Taxotere and Taxol). As I have said before, she told me also that there was no cure. I was told the same by my GP and by the podiatrist who diagnosed it. I did not know at the time that you could possibly prevent it by using ice on feet and hands. I have no problems with my hands, just my feet.
I do take a multi-vitamin and it has the B complex in it. I usually take it every other day, for no particular reason except that I do not like taking pills of any kind. I also take a B vitamin complex pill in addition. It does not seem to help with the neuropathy.
I do not really know if alternative medicine or homoeopathy has anything to offer. As for complementary therapies, such as acupuncture, I have never tried any.
Neuropathy is about damage to the nerves so I do not know whether anything can be done. Do you think it is the same kind of neuropathy that diabetics suffer from? I seem to think it must be, so I think we would have to be careful and vigilant.
I think what your sister-in-law said about chronic fatigue post-breast cancer treatment is probably right. We also have to remember that as the years of survival go by we are not getting any younger and energy probably reduces. I find that gingko extract energise me and it is also good for circulation, so that seems to make sense for both neuropathy and fatigue.
It is so good to know that you are having your last chemotherapy next week. Be sure to let us know which day it is so that we can all offer you congratulations. The time seems to have gone by quickly, but probably not for you. It is a pity that you have had all these side effects, but you have nearly finished and you will have proved that it can be done.
I suppose it makes sense to get a reduced dose if it gets you through to the end. I can only speak from my own treatment and I know that I was told that they needed my weight and height and that the dose was carefully measured on that basis. I remember that the actual dose was not made up at the hospital pharmacy until I had checked in for my appointment and nothing went ahead unless the readings of my blood test the day before were as required. I think I was very fortunate to go straight through all the chemotherapy without any problems.
I am so sorry that you are having such a hard time, but I can understand that you are going through difficult chemotherapy and at the same time are trying to take care of your husband who has health problems. Thank goodness that you have a bit of help a couple of times a week. If you can I would think the secret of dealing with your anxiety is to get as much peace and quiet as you can. It is just my personal opinion but if it were me I would try to keep away from anti-depressants. They are very habit forming. The deep breathing you do is probably very therapeutic. Keep telling yourself you are going to get through this. Chamomile tea is supposed to be very relaxing and of course soft music can work wonders.
Thinking of you and sending fond thoughts over the ocean to wherever you are in the US.
I shall let you know if I find out the name of the tree. It really stands out in someone's garden.
Do you know anything about the so called 'handkerchief' tree? I think it belongs to the davidia group. It has been in the news lately. Apparently it takes ten years from planting to have its first blooms and it grows to about 50 feet.
Take care
Sylvia xxxx
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Hi everyone
Just to let you know that I ave psoted serveral pieces of research news at:
http://www.janettecollinsfoundation.org/page16.ht...
Michael
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Hi Sylvia, (and all other ladies)
Everything went well with my 2nd chemo session. I took all your advice by drinking plenty of water and I also took an anti-sickness tablet before and after. Felt good but glad to report no sickness. Also bought some ginger/chamomile tea which seemed to help yesterday morning when I woke feeling a bit shaky. So sat outside to get some fresh air and drank my tea. Seemed to do the trick as I went back to bed and slept for 2 hrs.
Mary - your water garden is lovely it must be so peaceful.
Gill - it is amazing what you can do with pots. The colours are gorgeous.
Just before I was diagnosed my husband and I bought an old churchat Kirtlebridge just outside Lockerbie. We intend to renovate it into a house which we think will take about a year. We will have no grounds of which to speak just the front of the church and a path up the side so I think it will be hanging baskets and pots for us! I will try to post a few pictures. It has given me something to focus on and to learn to look to the future with confidence.
We are to have a good day here is Scotland so I am going to try a walk and get some fresh air.
Regards to all.
Jacqueline
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