Calling all triple negative breast cancer patients in the UK
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Happy Birthday 4everstrong!
xx
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HI, Sylvia,
Family is indeed a blessing, and I count it as such. However, I realize when trying to keep up with them for a week that I am not my old physical self!
Here is the rest of the story on the varicose vein: I started treating these before I was diagnosed with cancer in 2013. It required many trips and injections and some lasering, had no problems at all, when I found I had cancer I was finished with the vein work except for my calves. So last March I returned to the vein clinic to do just a few more treatments to finish. I did not question method before injections because I thought I would be getting the same as before. The doc came in and cleaned 2 injection sites on my right leg, put an injection in the large part of the calf where I had a large vein, and then injected me right above the ankle. He commented as he was doing it that he couldn't use a laser in that area because it could worsen neuropathy. He then left the office and left me with the nurse, and I asked her why the sites were so painful since I had had no pain in the previous treatments. She explained that they now gave a much larger amount and I would not have to return to have multiple treatments. The areas continued to be painful and tender, and the ankle hurt very badly for a couple of months, and then subsided to aching more or less, depending on activity. It is also still tender, and buzzy from the neuropathy. I returned to question the doc, and also about the other site, which continues to have a very dark streak on the upper calf, although the cosmetic part is not nearly so bad as the painful ankle. He told me it was normal, and would take time to heal. He was rather dismissive, and I will never have him treat me again. I am returning on Dec. 16 to question my (lack of) progress. The drug used is a sclerosing agent, meaning it kills the vein it is injected in and the blood dries up and is carred off, ideally.
The neuropathy. After my first treatment of chemo, which was Adriamycin, Cytoxan, and Taxotere, I was hospitalized with extreme neutropenia and fever spike. On the fifth day I got to come home, and a few days before my next treatment both my feet swelled, and were very puffy, painful and tingly. It lasted about a day and was over, I thought that must be the neuropathy I had read about, but I thought that was the end of it. After that they split my chemo into AC, followed by Taxotere. I iced my feet through the rest of the Taxotere, but it did not help. I guess the damage was done during the first chemo. After I was finished my feet were quite painful, as was my entire body for some months. I used a lot of ice packs! I have been diagnosed with rather different neuropathy than you. Yours is peripheral only. Mine is peripheral, motor, and sensory. Meaning I am affected system-wide to varying degrees. Since last week my feet and ankles have really been acting up, sometimes my rt. arm and hand really hurt, other body areas too. Also, I am not sure why this is, but my sense of smell is much sharper, to the degree that I cannot go in some stores or cars, because the smell of the clothing, candles, etc. is overpowering. Oddly, my hearing is also more acute, I went to a concert last summer and could hardly stand to be there. I looked around and nobody seemed to be affected, and it was mostly people the same age as me; the music was wonderful yet I was glad when it was over. I have not seen anywhere that swelling is a common sign of neuropathy, yet I don't know what else it could be. My rt. ankle hurts more since injection, and that is where the swelling of last weekend started. It actually has a small puffed area all the time at the ankle injection site.
So that is my story, don't know where this will go next, I just try to live with it since there does not seem to be much done about it.
Will be leaving for Aruba Monday morning Dec. 5th.
Hope you are feeling very well!
Talk to you soon,
Love, Mary
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HI, 4ever strong,
Happy birthday, and happy cancerversary!! Hope your celebration continues, since I am late with well-wishes. Hope all your worries are groundless, and your symptoms are nothing much!
You have a great spirit, good to see you here!
Talk to you again,
Mary
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Thanks Mary for your truth. These drugs are a bitch.I was on pain meds for my back which I think help with the A.C. T. and even then it needed to be increased. My back got fix a year ago and now muscle relaxers help. You are very brave and strong thanks again. Enjoy your vacation
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Hello 4everStrong,
It was nice to have you back posting and I am glad to know that you read the thread every day.
First of all, I want to wish you Joyeux Anniversaire. You are just a youngster at 40. I know from your posts you are a very wise and philosophical person.
Congratulation as well on the first anniversary since you were diagnosed.
I do hope all will go well when you have your periodic check up on December 16th and wishing you good news in every way. Let us know what the check up involves, because in the UK they appear to the patient as quite basic, but the oncologist knows what to look for.
Thank you for your words of encouragement to everyone.
Fond thoughts.
Sylvia xxxx
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Hello Rhonda,
Thank you for your post and for letting us know that you started your first weekly Taxol yesterday.
I was interested to know that your medical team is holding off on the carboplatin for the moment. It is probably wise to let you recover more from the neutropenia that landed you in the hospital.
I am not surprised that you feel tired. Chemotherapy drugs make patients feel very tired and the tiredness seems to build up as the sessions build up. In addition, that is an awfully long journey you have to make to get to your appointment.
Remember, keep well hydrated, get as much rest as you need and keep looking forward. There is an end to this journey.
It is good to know that you have no nausea and really good to know that your appetite is better. I think if you can eat properly during chemotherapy it is all to your advantage.
Thinking of you and sending best wishes your way.
Sylvia xxxx
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Hello Gina,
Thank you for your posts and the photographs.
I think that, as far as our nutrition is concerned, we just have to make sure that we have a varied diet, consisting mainly of a rainbow array of fruit and vegetables. In the more than six years since I started this thread, I have been impressed with the way those joining look after themselves through their nutrition. There is a huge amount of knowledge and information on this thread on nutrition and healthy eating. We all agree with Chris Woollams on his Rainbow diet which he has written about for a very long time. The Rainbow diet is also the Mediterranean diet and is based on common sense. We just have to make sure that we get a variety of everything.
I hope you have a good weekend.
Fond thoughts.
Sylvia xxxx
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Hello adagio,
I was glad to read your post and to know that all is well.
Being in New Zealand during that earthquake must have been very frightening.
It sounds as though you are having a great time.
We look forward to any photographs that you are able to send. The ones you have sent already are really beautiful.
When will you be back in British Columbia?
Take care and best wishes to your husband.
Sylvia xxxx
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Hello Mary,
Thank you for your latest post. I want to do it credit, so I shall post in more detail tomorrow.
Do you think all the chemotherapy drugs cause hand/foot neuropathy? I had no problems with epirubicin and cyclophosphamide and noticed that my feet felt strange after I had finished docetaxel (Taxotere). My oncologist was adamant it was caused by the Taxotere.
Do you think the swelling problems you are having could have anything to do with some kind of lymphoedema? I ask this because I recently saw a medical programme where a man was having both legs bandaged from thigh to foot with bandages and special stockings. It was nothing to do with having had cancer.
I noticed that at the podiatrist that I go to, they have manual lymphoedema massages, which sound very useful. It is just an idea.
That is all for now. I shall be thinking of you when you are in Aruba.
I shall post more later.
Fond thoughts.
Sylvia xxxx
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Hello Barbed,
I was wondering how everything was going with you.
Sending you very best wishes.
Sylvia xxxx
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This is my birthday and my one year cancerversary. I knew as of this date that I had a malignancy. I can truly say time has flown.
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well done! I have 6 taxol
To go and then on to rads and after chemo today everything is aching! Fluid and bed I rhink
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Hello Valstim52 (Val),
I just wanted to wish you a very Happy Birthday and to say congratulations on reaching the one year anniversary since your diagnosis. To post about this helps to motivate and encourage those going through treatment.
Keep up the good work.
Fond thoughts.
Sylvia xxxx
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Hello Kathseward (Kath),
Thank you for your post.
I was glad to read that you have done six infusions of paclitaxel (Taxol). I think you have the right idea to drink plenty of fluids and then get some bed rest. Take great care as these drugs build up in your body and the side effects can build up as well, but not necessarily.
Thinking of you.
Fond thoughts.
Sylvia xxxx
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Hello Mary,
I do hope you will get to the bottom of everything when you return to the clinic. I do not like the sound of what you have to have done to treat varicose veins. Do you think laser treatment for varicose veins would be easier, if a patient can have it?
As for all the problems you are having with your neuropathy, it is very difficult to know what to think. Only a specialist will be able to get to the bottom of it.
I have just been reading up a very good section on neuropathy in the medical book I have here at home. It is entitled A-Z Family Medical Encyclopedia, by the British Medical Association, published by DK. My edition is December 2014, so it is fairly up to date. You might want to look up www.dk.com. The section on neuropathy is quite detailed. It starts with a definition of neuropathy and then goes on to types of neuropathy and there are quite a few different ones, including distal neuropathy, symmetrical neuropathy, diabetic neuropathy, entrapment neuropathy and alcoholic neuropathy. There is also polyneuropathy. The section continues with details on the causes of neuropathy, the symptoms, diagnosis, treatment and outlook.
There is also a neuropathy caused by nutritional deficiency for which vitamin injections can be given.
I do hope you have a relaxing time in Aruba. If you have the time, please post some photographs.
All is well with me. I suppose my biggest frustration seems to be that I do not have enough hours in the day to achieve what I would like to achieve. If I divide up my day it seems to be running the apartment complex where I live and making sure all is in order, keeping this thread going and making sure it keeps to a high standard, general running of the home, shopping etc. and then, if I am lucky, some time to myself to relax and read, gardening and some walking when weather permits. I find I often miss out on the last part for lack of time. I forgot to say that I am also trying to proof read the book that one of my cousins is writing.
Sending you my very best wishes.
Keep well.
Love.
Sylvia xxxx
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Hello everybody,
It is that time of week again and I hope everyone is trying to get ready for a relaxing weekend. It has been another busy week on the thread and Kath, Gina and Rhonda have been keeping us informed of their chemotherapy treatments.
We have not heard from ChrisAsh in England, who is still going through chemotherapy but may be nearing the end of it.
I am sure we are all glad to hear from Val and 4everStrong, both of whom were having birthdays this week.
I do hope we shall hear from lilyp6 (Pam) to let us know all continues well with her.
I do hope merscotland (Maggie) UK and Lamis UK will let us know how things are going with them.
I was glad to see that Barbed UK popped in to wish 4everStrong a Happy Birthday.
Maryna8 (Mary) continues to keep this thread strong.
I would like to say hello to the other groups who went through treatment or sought support for loved ones going through treatment. You are not so active now, but please keep in touch when you can.
Hanieh, Amanda10, PeterandLiz, InspiredbyDolce, Michael and Tom.
Thank you, adagio, for letting us know you and your husband are fine and still enjoying your travels 'down under'.
Best wishes to all of you.
Sylvia.
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Hi, Sylvia,
I think the Taxotere caused my neuropathy. As I said, I received Taxotere during my first infusion along with the adriamycin and cytoxan. My MO thought he would give me all 3 drugs 6x. After my first treatment and I became so ill, he rethought that and gave me the AC followed later by Taxotere. But in my case, I think the damage to my nerves was already done. When I got the AC without the T, my main issue was fatigue. I have not read anything about AC causing neuropathy, but instead it is caused by the taxanes and perhaps the platins.
I do not think my particular swelling is lymphedema mainly because the area where I received the varicose vein injection is always slightly swelled, on one side of my leg just above the ankle where the vein doc put in the needle. It is slight, you would not notice it looking at me unless I told you, but it is always a little painful if pressed.
The swelling I had over last weekend is gone, I think it was a combo of neuropathy, tiredness, too much standing, a lot of rich food, and the added factor of the sclerosing medication. The area is already quite sensitive. Perhaps it was also stress on the lymph system, with everything going on maybe there was too much for it to handle that day. It has reverted to normal, now that my routine has gone back to its' usual pace.
It puzzles me that my MO wanted to give me all 3 drugs together, nobody seems to do that anymore. At the time, I knew a couple of other women who were also getting all 3 together. The way it's done now seems far gentler on the system, glad I only had all 3 together once, I suppose.
I will try to follow the discussions here while I am in Aruba sitting under my beach umbrella!
Talk to you soon,
Mary
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Hi, Valstim,
Another birthday/cancerversary! Congratulations, and looking forward to hearing about many more of them!
Mary
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To all,
I hope I didn't cause undue worry for anyone on chemo right now with my previous posts. I firmly believe that receiving the Taxol/Taxotere in 12 weekly doses (as seems to be the norm now) is far easier on the system with less chance of neuropathic damage, I wish my doc had done it that way throughout my treatment. At the time of my first infusion I didn't know any better, and followed his protocol. He has since retired, his last day was the day of my last chemo treatment, so he is not around to ask about it.
Sylvia, I posted my post above, and then saw your post of a little while ago, I will check out the website you mentioned. I have seen a neurologist, he had nothing for me except offered drugs. I saw the MD on my first visit, he tested me for all auto-immune diseases as well. The nurse/practitioner that I saw on my second visit did test all my muscle reactions and pronounced them okay, I think there is just not much they can do about neuropathy. I have read that nerves will regenerate, and I have also read that they do not, it seems to be a murky area.
Sounds like you are very busy, but it's wonderful to be needed, I think, and to have purpose.
Talk to you soon,
Mary
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Hi, jcpriest,
Glad you have found relief for your back pains, I took pain meds too for a while after finishing chemo, my entire body would just be a ball of misery at times. Better now, looking forward to a massage later today! Our diagnosis dates are pretty close, glad you are doing so much better. Thanks for saying I'm brave, but I think we all do what we have to do to carry on, and play our cards best we can. Definitely helps coming here and talking to people who are going through the same experiences.
Hope to see you again here!
Mary
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Hi, Gina,
Thanks for explaining kalamansi, glad to know it is a lime, we have lots of those coming from California and Mexico. I like to squeeze limes on my salads with some olive oil, it is one of the most alkaline of fruits, and that's good. Sometimes our diets are way too acidic. My acupuncture doc gave me a chart of acidic and alkaline foods, I am supposed to try to eat more of the alkaline foods, he tests me occasionally to keep track of where I am.
We grow okra here in the summer, and broccoli in the spring and fall. Sweet potatoes originated in Central and South America, they grow here too very well. The bilimbi fruit is out of my reach, I don't know anywhere around here one could find that.
I enjoy reading about the different foods you have!
Talk to you soon, hope all is well, and the treatments are being kind to you,
Mary
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Hi, Adagio,
How wonderful you checked in, and posted pics of Tasmania, you must have made so many memories! The blue water is beautiful, very cheerful. New Zealand must indeed be fabulous, one of my favorite movies is Lord of the Rings which was filmed there entirely. I have watched it over and over, and always marvel at the scenery. There are usually some very wealthy people here threatening to move there if things in our country don't go as they like, so it must have many advantages! (I don't know if any of these people have actually moved).
The earthquakes must have been terrifying, that is a whole lot of shaking going on with that many aftershocks following the big one. I imagine it is hard to know what to do, should one go inside a structure, or stay outside where the ground could open up? Whatever you did, glad you are okay!
Happy travels, and
Talk to you again soon,
Mary
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thank you guys and good luck to all the ones in treatment, hoping you will get through this with minimum side effects.. and strenghts to us all of us.. i wish us all great time ahead!!
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thanks Sylvia
U are are right! Feel terrible today everything Ng is aches ! Need to tip
Up on panadol. Hope everyone is doing ok
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just checking did anyone have a dry tickly cough on taxol? Seem to have developed one in the last week and it's driving me batty. No SOB or productive cough just an irritating dry ticklyon
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I had a dry tickle cough for weeks but it started on AC and I believe it was an allergy-drip in my throat.It was
Annoying.I had my first Taxol last Wednesday and I have
What looks like hives on my torso-it is weird because
It is on the affected breast.I was on antibiotics,too.Time
To call the doctor
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hang in there! Are u having taxol weekly? Think I have a post nasal drip as well
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Hello Mary,
Thank you for your posts. I do hope you have a nice break and that you will come back home feeling nicely refreshed.
I have no solution to neuropathy. As far as I am concerned, I do not think there is a cure for it.
Have a good holiday.
Fond thoughts.
Sylvia xxxx
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Hello Kath and Rhonda,
I just wanted to let you know that I am thinking of you as you journey on with your chemotherapy with all its ups and downs.
Just keep telling yourselves that it will come to an end. I think, for Kath, she finishes on January 12th 2017, but I am not sure when you finish, Rhonda. If you have a completion date please let us know.
Keep looking forward.
Best wishes.
Sylvia xxxx
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Hello 4everStrong,
Thank you for popping in to say hello. It is always nice to hear from you.
Fond thoughts.
Sylvia xxxx
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