Calling all triple negative breast cancer patients in the UK
Comments
-
hi Sylvia
Just a quick one while I have internet connection, had an amazing day swimming with dolphins, something I've always wanted to do
0 -
Hello Susan,
Thank you for posting all that information about where you are in France. I can understand why you want to spend some time there during spring and summer. I found your website most interesting and most informative. The photographs are lovely and I am sure all visitors will get an authentic taste of France.
Enjoy every moment of your stay.
Amicalement,
Sylvia. xxxx
0 -
Hello Gill,
Thank you for the
lovely photograph. It is good to see you looking so healthy, happy
and relaxed. It just goes to show that there is life after cancer and
it is good to know you are fulfilling one of your dreams. That
dolphin sure looks friendly! The photographs of you and Susan looking
so well and relaxed so shortly after finishing treatment will be an
inspiration to all of those going through treatment or getting
diagnosis and having to face treatment. Keep up the good work and
keep in touch.Thinking of you.
Sylvia xxxx
0 -
jackpot - what a great photo - you look so happy and radiant. Enjoy the remainder of your vacation!!!
0 -
What fabulous photos, they give you a happy feeling. I love the dolphins.
Wishing that we were going on our yearly visit to France, but it will probably be America instead to spend time with Damian's sister.
Today the support centre is 4 years in existence......so many people have come through their doors. Last night at a fund raiser I met a group of women who go to our outreach centre at the other side of Clare.
You were asking, Sylvia on how the health system could be improved. All I can say is that I hope that the UK don't consider the two tiered system that we have here in Ireland. I really believe in universal health care in particular free GP visits. Since I have lost my medical card I am reluctant to go to my GP unless I feel it is very serious as it is at least 50 euro plus medication each time.
Recently I went for what I thought was a follow up MR I on my shoulder and arm to Limerick. After waiting for 2 hours someone eventually came to say that the appointment had been cancelled as it was the original one that was requested February 2013. I had paid last year to have it done in a private hospital as the waiting list was so long. That MRI showed abnormal bone marrow and so to me it was logical that I would have a check MRI. A long story short , after many phone calls and checking with my breast surgeon , it was felt not necessary to have a repeat MRI. In one way a relief because I won't have to spend weeks wondering but in another- I would have felt more reassured if I had have had the shoulder checked.
I have had quite alot of pain recently and my pain clinic appointment is not until the end of September and it is very frustrating. I know that it all comes down to money. The breast nurse suggested that I go back to my GP but it would be a waste as he is always reluctant to do anything re the cancer or the pain and refers me back to Limerick anyway
On a happier note I am getting ready to visit Kerry, just for 2 days. I am so looking forward to seeing my little man Oskar and getting one of his huge cuddles.
The weather here is wet and windy and so that i hope that by the time that we get back it will be better. I need to sort out all my pots at the front of the house.
Wishing everyone well.
0 -
Hello linali (Lindsay)
I agree with you about the photographs. They somehow do give you a happy feeling and Susan and Gill look so fit and well.
I was interested to know that you usually have a yearly visit to France. Do you go to different regions ar do you stick to the same place? I know that Dordogne is quite popular and the countryside is lovely. The same goes for Corrèze. I hope you have a good time in America.
I was glad to know that the support centre is still going strong after four years. I am sure it helps so many people.
With reference to the health care system in England, I am very concerned about it, as I keep reading it is on the point of collapse. I do not know about Scotland. It is of course the NHS but the funding seems to be different and the people in Scotland seem to get better care. I do not know if this is because it is a much smaller population, only about three to five million. In Wales I get the impression there are problems with long, long waiting lists for treatment, even though they have a very small population. I think the problem in Wales is that the National government is starving them of funds. I think it is awful that the two main political parties play political football with the health system. When the NHS was brought in 1948, that was this country's finest moment and Clement Atlee, Nye Bevan and William Beveridge would be horrified to see what is happening to it. In England I think the problem is that we are overpopulated, that too many people are making too many demands on the system, the staff are overworked and the government continues to cut front line people. I think I was very lucky that all my treatment went so smoothly and that my oncologist and breast cancer surgeon are completely dedicated.
I also wonder what is going to happen about our GP service. There was a time, not too long ago, when we could get to see our GP the same day as phoning, but now the norm seems to be a three week wait unless you are prepared to see doctors whom you do not know and who do not know your history. I always insist on seeing my own GP, not that I go to the doctors very much as I believe I am better off staying away. Again, I think we have abuse on both sides. I think doctors give out pills too freely and people go to the doctors for every little thing. We should never say the health service is free, it is not. It is paid dearly for out of taxation. It is just free at the point of uses, but I am wondering for how long? So much of our NHS here has been outsourced and by that I mean privatised.
I was sorry to read about what is going on with the healthcare in Ireland. I think 50 euros is quite a lot of money to have to find up front. Who is exempt from payment?
I think what happened to you at your MRI appointment was most unacceptable. The fact that the private MRI showed abnormal none marrow surely needs to be followed up. As you say, in today's world, everything is down to cost.
I would also think that as a person who has been through cancer treatment, any kind of pain needs to be investigated. You cannot take chances. I think the end of September is too long to wait. If that were me, I would write to my oncologist saying that I have concerns about long term pain and would like to get checked out. I think pain is better checked out by the oncologist, not the breast cancer surgeon and not the breast care nurse.
I do hope you have a nice visit with Kerry and Oskar.
It is wet and windy here, probably a day to some reading.
Keep in touch.
Fond thoughts.
Sylvia xxxx
0 -
Hello to Sylvia and all........I want to start by chiming in and telling Jackpot how wonderful she looks being kissed by the dolphin! I look forward to having that much energy again one day, for sure. Hope you have a wonderful rest of your vacation, jackpot!
Carolben, I'd be interested to know how you tolerated the Taxotere versus the AC, I have one more AC and then the T. And when I went to be measured for my prosthesis bra, the lady said being lop-sided really is an issue when you only have one breast; I am small so don't notice too much, but I can imagine large-breasted ladies really do feel crooked!
Susanicking, that is a beautiful pic of you and hubby and dog on vacation. You look very happy and healthy and the dog is cute, by the way!
Sylvia, I am so glad your check-up went well, hope that is a load off your mind. You can get back to enjoying the summer. How warm does it get in Exmouth?:
I feel not-too-bad the last few days; today is my Nadir day, I will go to have my blood drawn and they will see where my counts are. Hopefully it will be an uneventful visit.
I am slowly learning that when I feel tolerably well, it is not the time to cram in as many chores as possible. That is a sure way to feel completely out of commission the next day. Last Saturday I had about 24 hours of that, so tired that I felt paralyzed and comatose. So I make sure for every small job I do, I sit down or lie down for a while to make up for it.
I was curious as to why they no longer give the fast-acting bone marrow stimulator, I think it is called Neupogen, after the Nadir to help your body recover. We get the Neulasta the day after infusion, which kicks in about a week later. Anyway, the nurse said they used to give the fast-acting one with regularity but no longer. When I was hospitalized with the fever/lowWBC they gave me three of them, and my counts soared quickly. I bet when you get down to it, it has to do with cost. The nurse said the Neulasta costs $5000-$6000 per shot!
I spoke to a lady yesterday who told me I could go to Mexico and get alternative therapy, instead of the chemo. She did not know the success rate. Many years ago I knew a woman who did just that, at the time it was something to do with almond pits. I don't think she had a lot of success. I had another friend who ate almonds every day to fight off cancer, she was diagnosed with and died of lung cancer a few years later. This cancer does seem to be an epidemic. I have lost close friends to brain cancer, breast cancer, colon cancer, lung cancer, oral cancer and liver cancer.
Anyway,on to a more cheerful topic! The weather here is very nice, warm and sunny. There is a lot of pollen falling from the trees, though, that is turning everything a sickly green. Today we are supposed to have rain and that will wash it all down for a while. It will be easier breathing! We have a very large asparagus bed that is delivering a bumper crop of asparagus this year, that is a nice treat. I usually plant a large vegetable garden but will not do so this year. I don't think I would be able to keep up with the work that entails. My brother is going to plant a few plants for us and tend to them, and he always has a large beautiful garden a few miles away.
I hope everyone has a great day, week and to all those who are on vacation I hope you know I am there in spirit! Talk to you soon, Mary
0 -
Hi Sylvia,
I was glad to hear about your successful check-up. It will have been a great relief to you and Raymond.
I am a bit behind with the links but I read, today, what I consider an exciting drug development:
http://www.wjtv.com/story/25456388/existing-leukem...
Michael
0 -
Hi Jackpot
So nice to put a (lovely!) face to you Gill - and what a fantastic experience! So glad you are having a wonderful time and look glowing with health,
Norma x
0 -
Hi, Sylvia
My 8-day Nadir test did not go as well as I hoped. All my labs were very low, WBC, RBC, neutrophils etc. I asked for a shot of the fast-acting Neupogen bone-marrow stimulator but was refused. They want to wait till next week, test again, and see if the long-acting Neulasta has finally kicked in. I asked if they would give me a shot of the Neupogen then if I was still low, they said no. At this point I got upset; seems they will only give that shot if I am too low on chemo day and then they will give it and chemo will be delayed a day. Now common sense would say why not give it next week and I would have a week to recover before chemo, but oh no. Turns out it's all to do with insurance.....they don't want to pay for both shots in one cycle because of cost. I told them I would pay myself, that got no response either, except to be told it is very expensive. Well, it's not like I'm going on any vacations or buying a new car; I don't mind spending it on something that will help me get better quicker. I also have a very ill husband to take care of, the stronger I can get before the next chemo the better, but seems I am the only one who thinks so. I was quite agitated when I left.......I am going to call today and complain and maybe talk to someone else who has more authority and see if I get anywhere.
I'll let you know, Mary
0 -
Hi,
Mary ,I am sorry to hear that things didnt go too well I hope that you will be able to sort something out. It makes me very angry when they start talking about cost as opposed to what is best for us cancer patients.
Lindsay
0 -
Hi Sylvia,
I am just back from Wexford and up to sort a few things out and hopefully go to Tai Chi.
Sadly Kerry's scan showed no signs of life and she is naturally heartbroken.
She had another missed miscarriage at 12 to 13 weeks and has now to sit and wait until something happens.
Naturally she is looking for reasons why but the doctor that they met yesterday was young and possibly not used to giving bad news and just told them that it was Kerry's age , 41 in June, and that her eggs may not be good quality.
I came home to pack some clothes and she has a bed booked for Friday if nothing happens before. I have my phone by my side as I will go straight away if she has to be admitted before.
Unfortunately where they live they have no network of friends and so no-one that good look after Oskar for a few hours.
She is worried too because of the Savida case here where because of the law here and mishandling she wasn't treated in time and died.
Apparently according to the nurses and midwives conference here nothing has improved despite an inquiry.....the patient ratio is still too high also.
It is a 4 hour drive and I am going to spend the next few days building up as much energy as I can.so that I will be of use to them.
I am hoping that Kerry and Oskar will come back with me when she comes out of hospital. She has most of her friends here and it will do her good to be looked after and be able to chat with them as some of them have had miscarriages too.
I am hoping to ask people that I know who were midwives, if only for a good support group. One like this.
Kerry didn't find the one that she contacted particularly useful last time. She is determined to try again as she doesn't want Oskar to be an only child.
It makes me feel so useless that all I can do is give her hugs and feed her well.
0 -
Hello maryna8 (Mary),
It was nice to hear from you. I was glad that you are not feeling too bad and I hope you
will be able to get through to the end of chemotherapy without too many problems. Just remember that you must drink lots and lots of water, get lots and lots of rest and keep your mind focused on
looking forward to an end of chemotherapy and then looking after yourself to recover from it all. During chemotherapy you will not be able to carry on with a normal routine and when you feel relatively
normal do not go trying to do a load of things, just relax and rest.There are two kinds of medication to deal with low white blood cells, one is filgrastim (Neupogen) and the other is pegfilgrastim (Neulasta).
From what you have said, it looks as though they are keeping the filgrastim (Neupogen) for emergencies. When the nurse said that they no longer used the fast acting one, you should have asked why. Never be afraid to ask questions.
I know it is very difficult going through chemotherapy for many women, but you will get through this.
I have just read your second post to me and I was so sorry to read that you were having a lot of trouble with low white blood cells, low red blood cells etc. Were you told that you had neutropenia because I thought that was an emergency situation. I think it is probably a good idea if you can wait a little to see if the long acting Neulasta kicks in. this will give you time to recover.
I hope anyone who had these problems during chemotherapy will post to let us know how they coped. I think the usual procedure during chemotherapy is to delay the chemotherapy if your white blood cell count is low. Instead of this, you could be given a reduced dose of chemotherapy and I know many women on this thread have said that having a lower dose of drugs on a weekly or two weekly basis made chemotherapy much easier for them than having the every three weeks cycle. You could ask if this would work better for you. Of course, the other alternative, as you know, is the Neupogen or Neulasta.
The lowest levels of white blood cell count occur about seven to ten days after a dose of chemotherapy. It is very important to contact the hospital if you feel hot or unwell or have any flu like symptoms such as fever. You must do this quickly because all these symptoms are signs of an infection.
As you know, in the above case, you need to be in hospital and on antibiotics.
Since this has already happened to you, you probably might benefit from a lower dose of the drug to stop this happening again. This would seem to be the only alternative if the Neulasta is not working and the hospital will not give you the Neupogen.
I would not take any notice of anyone telling you to go to Mexico for alternative treatment. Try to get through your chemotherapy treatment.
I saw a homoeopathic consultant and I saw an alternative doctor, a reputed nutritionist, and they both told me that I needed to have orthodox treatment, surgery, chemotherapy and radiotherapy, and that nothing else would bring me to a state of no visible evidence of disease. I used both of these doctors during my treatment as an adjunct. Chemotherapy was relatively easy for me, but I did do everything to the letter about fluids, rest and looking forward.
I have eaten bitter apricot kernels for nearly nine years since diagnosis, but I have never heard anything about almonds. I keep to a very healthy diet. I ate prunes and dried figs as well as raisins during my treatment to keep my red blood cells up. I also took iron tablets. I did not have any problem with low white cell counts and I do not know why. We all react differently to this treatment.
I do agree that there is an epidemic of cancer of all kinds. I think it is the western diet in general, chemicals in the environment, too much drinking and smoking, too much junk food, too much sugar, too much stress and not enough exercise.
The weather in Exmouth is never really hot or cold. Today it is cold, wet and windy.
Enjoy your asparagus. I love it and it is just coming into season here.
Look after yourself and take it easy.
Fond thoughts.
Sylvia xxxx
0 -
Hello Michael
Thank you for your kind words. I am very glad to have my check up behind me.
Thank you for the link. I shall look at it later.
Fond thoughts.
Sylvia
0 -
Hello linali (Lindsay)
I was sorry to read about what your daughter Kerry is going through. I do hope everything will turn out fine in the end and that she will be able to have the second child that she wants. I can understand she is having trouble because forty-one is, so we are told, quite old to be having a second child. Let us know how everything turns out.
Thinking of you.
Fond thoughts.
Sylvia xxxx
0 -
Hello Michael,
I just wanted to let you know that I have just had a look at the link you posted and found it most interesting.
If the drug mentioned, imatinib, could go through trials quickly, because it is already in use for leukaemia, that would be good news. Let us keep our fingers crossed.
I was interested to read again how TNBC affects more Afro-Americans than whites and that the state of Mississippi is badly affected with 307 women diagnosed in 2011.
I do hope all is well with you. Do you ever post here in Words. When I put it on the thread all the sentences come out disjointed
Fond thought Sylvia.
0 -
Hello Sylvia!
Thanks for advice, I do try to do as I am told by the docs. I drink lots of water and I eat often and try to take in lots of protein. Where I do fall short is the resting; that is sometimes hard when one lives with an ill husband. But I do spend a lot of time on the couch!
I did ask why I was being refused the Neupogen when my NADIR test was so low; and what I got out of them was that the insurance did not want to pay for both the Neulasta (which I had the day after chemo) and the Neupogen in the same cycle. However, when I go in for my next chemo, if my scores are still low, they will give me a Neupogen shot and then delay my chemo for one day. I have since spoken with my oncologist's office. I am going in Tuesday to take my husband for an appt., and while there I will speak with oncologist and see if I can get the Neupogen then, which would be a week before chemo instead of the day before. If I start out with a deficit again I will land in the same place.
When I was in the hospital after my first chemo my diagnosis was febrile neutropenia. Now I have neutropenia but they apparently don't get too worried unless you get the fever or a sore throat etc. And please don't think I don't ask questions! I question everything and look at all my lab scores and I know what they mean....I have found you have to be your own advocate, and speak up. Sometimes I get good answers and sometimes I find that people are treated on a standard, if you don't fit that standard you had better speak up or your results will not always be good. I have spent a lot of time with my husband in the hospital and learned early on that you can't just take someone to the hospital and assume they will be well cared for; it takes vigilance to make sure the proper steps are taken. It is exhausting but necessary to stay on top of what is going on.
My first chemo I had the TAC. Ended up in hospital. The second chemo I had the AC, a slightly lower than normal dose. I did okay with that. My third chemo I had the AC, but a higher dose than the time before. I am not sure what they have in mind for my next one, I just want to be as strong as possible before I get it! What I hope happens now if that when we go to the doc Tuesday they will check my blood, and give me a shot of the Neupogen. Because I can look at my past lab scores and I know I will not be up to par by chemo time if they don't.
I have thought about taking the iron pills but I am having such a problem with constipation and hemorrhoids that I don't want to add anything to the mix that will exacerbate that; very painful even though I am taking Miralax and pills on top of it.
I am glad you got through your chemo in such good shape, I guess we are all just different. Apparently my blood cells don't build back as rapidly as they should. One of the oncs said "Well, 60+-year-old bone marrow isn't like 40-year-old bone marrow." But I will keep plugging along! Thanks for being here to listen and offer words of wisdom....I am going to try to eat more raisins, not too sure about the prunes but I will give it a try.
I am sorry Exmouth is usually cold, wet and windy but I bet your occasional nice sunny days are very appreciated! It also probably keeps your neighborhood from being too overrun by tourists, maybe? But you are probably a hardy bunch there, and the holiday-takers are out and about anyway.
I will let you know what happens next, I am so glad I found this discussion board, it is a real help.
Mary
0 -
Hi, Linali
Yes, I was angry too; and I have been making a conscious effort to try to avoid a lot of stress. I have taken steps to try to make the situation better next week; wish me luck for success. One of the nurses told me that I don't seem to respond to the Neulasta as most people do.....my response was then don't treat me as most people. Give me a little help here! But hopefully next week I will speak to the doc and get something going.
Best wishes! Mary
0 -
Hi Sylvia
I am not sure what you mean by "posting in words"? Do you mean the links?
Michael
0 -
Hello Mary
I do hope you don't mind me chiming in here to add a comment regarding the Neutropenia you have been suffering from.
I too suffered from Neutropenia, after my very first chemo transfusion (FEC) and a further episode with the second. I had a very high temperature and was hospitalised in isolation with infection. Intravenous antibiotics were administered for Neutropenic Sepsis. It was a worry. I do remember writing in this forum about something my Oncologist divulged, but will repeat it in case you did not read my post. To ease my considerable panic at the time he told me a 'little bit of Neutropenia is a very good thing'. Apparently there is a benefit to long term survival if it is present in early Chemo. If you google 'Prognostic significance of Neutropenia in Early Breast Cancer' you will read some research on this.
I am only passing this on to you in the hope it may help you to see a benefit to the condition - I know how worrying it can be. I too had 60 year old bone marrow trying to work overtime! I was given the stimulating colony injections, but only because I did have sepsis.
Good luck Mary, Norma.
0 -
Hello Mary,
I do hope all will go well for you with your chemotherapy this time around. You must be mighty fed up with all this by now. I am sure you are doing all you can to get the best treatment for yourself, but I know it can be tough sometimes. You have to keep telling yourself that it is your body and not theirs, and that you want the best for it. I do hope you will be able to move on from this and put this all behind you.
It must be very difficult having your husband ill on top of all this hassle with chemotherapy. I do wish him all the very best. I do agree with you that you have to be very vigilant in hospitals and make sure that they do not take over. You have to be in control all the time.
Exmouth is very busy most of the year with tourists, especially when it is dry and there is a bit of sun!
We are a short walk from the sea, but it is quiet where we are.
Dried figs are very good for keeping constipation at bay. If it is really bad, a mug of strong coffee will do the trick.
Take great care. You will get through this.
If you can, read B is for Breast Cancer. It will make you laugh.
Fond thought,
Sylvia.xxx
0 -
Hello Michael
I have been composing my posts in Word, so that I can save them, then copying and pasting into the box on the thread. However, for the past week or so, whenever I paste into the box, the formatting goes berserk, breaking the paragraphs up into separate chunks. I then have to edit the thread to remove all the line breaks it has put in so that it is back to normal.
Any thoughts? Raymond is baffled.
Best wishes
Sylvia
0 -
Hi, Norma
I am delighted to have you chime in with your input! I am sure you are right that it is desirous to have some neutropenia.....makes sense that the more good cells the drugs kill also means they are killing more bad cells. I guess I thought that at some point the docs wanted the patient to come back to more normal levels before the next infusion. And the Neulasta is supposed to bring us back to those levels at some point; in my case it seems to be going very slowly. You were right to pick up on my panic too. After my first treatment and the hospitalization I have been paranoid about the low blood counts. When I went to the hospital with fever it was very sudden; I was also there 4 days in isolation on antibiotics and had no time to really arrange for my husband's care. Friends and family took over to the best of their ability but 2 days after I came home he was hospitalized.....I don't blame myself but am just so desirous of that whole situation not happening again. I had 3 shots of the Neupogen while in hospital and it raised my levels so quickly it was amazing. One of the nurses told me they used to give it much more frequently at the infusion center but now they depend heavily on the Neulasta.
Well, I am going back for a blood re-test Tuesday or Thursday, we will see what happens then. I just hope I don't have to go into my next chemo at low levels; but I will try to remember "a little neutropenia is a good thing." Even if I do feel like a dishrag!
Thanks for sharing! Best wishes, Mary
0 -
Hi Sylvia
I don't use word much but I have a couple of thoughts; perhaps the text box has become narrower and are paragraphs left aligned? Have you got word wrap turned on?
Michael
0 -
Sylvia, thanks so much for the encouraging words. That is the wonderful thing about this board, to realize that there are many others who have gone through the same thing and are going through it now. And you survived! Gives me hope.
I have looked at "B for Breast Cancer" on Amazon, it is only available ordered from the UK so I hadn't done it yet. But I have it in my cart for when I am ready to do it. A good laugh about all this would be a good thing.
I think I remember you saying once that you had some neuropathy in your feet. I understand that is from the Taxol? I am approaching the time when I will be doing that, and when I had the Taxotere in my first infusion I did go through a period when my feet felt like swollen pincushions with pins in them. Probably not a good sign. I have heard a little about cold therapy while treating with Taxol, did you do anything like that when you went through it?
Talk to you soon, Mary
0 -
Hi Mary,
I used ice packs on my hands and feet during Taxol and had just the slightest to no neuropathy, feet only. Also, I was on vitamin B supplements the whole time and this was part of the regime for Taxol. When I finished chemo I saw my breast specialist (things are a bit different here in Germany) and she told me I could stop the vitamin B. Within days I started getting numb feet. Started back on the B vitamin for another month or so. I'm a believer in the cold packs! I did chemo with 3 different doctors who were also patients (BC just does not discrimate!) and all 3 said use the packs. So there's my 2 cents worth. I did 16 infusions of Taxol, low dose and it was truly a picnic compared to EC. All the best! Susan
0 -
Susan, thanks so much, I am very interested. Now, did you just use ordinary ice packs on your feet and hands during the infusion? Or were there special socks or gloves or something? I am already taking B-Complex, is that good enough or did you take a certain kind of B?
I have another question for you since you did the weekly Taxol. I have a choice to do 11 weekly Taxotere doses or 3 doses 3 weeks apart. Naturally the 3 doses would be heavier, it sounds like you had an easier time with the weekly. On the other hand, the 3 doses sound more manageable since I don't live close to the infusion center.
Thanks for any input. If I have a complaint about my infusion center, it is that I don't get enough info on some things. I only learned about the icing while on the internet, nobody mentioned it at the doc's office.
Talk to you soon, Mary
0 -
I learned about ice on the internet too but my hospital was all prepared for icing. They had frozen packs which they wrapped in towels. I normally did it barefoot and at times took a minute or so break when it was just too cold. You strangely get used to it.
I am sure others will chime on on Taxol dosage. Weekly was seriously easy. I could come home and resume normal life....once my husband, dog and I walked for 90 minutes just after chemo. I could at times not tell I had been there....amazingly easy. I think the issue is the associated pain with high dose Taxol which can vary from mild to absolutely brutal. I had two friends who needed serious narcotics and were still in pain. I'm a big chicken baby who did not want to risk it. My chemo for sure went on forever it seemed, but then it also seemed to go by quickly when I was going every week. Since you live not that close and are probably considering the higher dose, personally I would have a chat with them about pain meds (Germany is so resistant to handing out the opiates!) and how others have tolerated it. I also have two other friends who did ok with it, just ibuprofen.
Good luck with the decision! How far away do you live? I could drive after taxol with no issues. After EC I was happy to not have to drive!
My chemo handout paper specifies B12 (had to look!) but it was a B complex that I took also....I still had the box. I guess as long as B12 is part of the complex......
0 -
Susan, I will have to check out the infusion center's approach on icing next time I am there (tomorrow for a lab test). I have one more AC next week then on to the Taxotere.
Good to know that the weekly Taxol wasnt too bad, one of the oncologists seems to be pushing that. Another one says the 3 sessions 3 weeks apart is the way to go. Since my white cell count seems to be getting lower with each session, that may play a part in the decision too.
I am curious about the pain you say is associated with the Tax....my first treatment was with AC + T, and I did have a lot of leg pain; I thought it was the bone marrow shot but haven't had it since I've only been doing the AC. So maybe it was just the Taxol. I remember at the time I mentioned it to the nurse and told her I'd been taking Hydrocodone. She said O, you shouldn't need that, only Aleve. Guess it wasn't her legs that hurt!!
If I could drive myself to the weekly sessions that would be good, they have always given me a dose of Benadryl with my chemo which makes me woozy and needing a driver.
Sounds like I will have lots to find out over the next few weeks.
Best to you, hope you are still vacationing! Mary
0 -
Yes mainly bone pain, sometimes severe. Then there were the two friends who just needed Tylenol.
I also had Benadryl with EC but nothing with Taxol. No problem. Slightly tired at infusions 10-12 but driving myself, no prob. My husband loved going along because my chemo was fun fun fun but I could do the driving to get home! I'm so lucky that I had such a great experience in chemo...who would think rip roaring fun at chemo in Germany?!
0
