Breast Cancer Now Forum

Hi Gerry, Wanted to know what is happening with you. I have now had Taxol/Avastin and Zometa since end of May 2008. Since the beginning of this year it was reduced from every week to all 3 once a month and the Avastin every 2 weeks. My scans have been clear so far this year. Am about to have another one at the end of this month. Because I only have the Taxol once a month, I only feel bad for a couple of days . Otherwise my quality of life has been pretty good. My onc says she feels that I should stay on it as long as it is helping me. I am on the Roche clinical trial, which means that I have no trouble in obtaining it. Penny ... View more

Dearest Debs, Off all the people here, you are the one that I remember! Glad to see that you are hanging on in there, horrible and lousy as it is. I had my Taxol,Avastin, Zometa cocktail this morning. It has been now a year and 5 months of this treatment. They have decided to leave me on this until it doesn't work anymore!!! I just wanted to let you know that I think about you very often, and always look for you whenever I come on the forum. I pray that things will improve for you. Best wishes, Penny ... View more

Hi Deidre, I hope that this decision is going well for you. I wanted to ask a (hopefully) relevant question. I have been on monthly Zometa since May'08 and for the last few months, have been having quite a lot of pain in my collar bones, especially when I try to take off/put on a t-shirt as I have to raise my arms over my head. I have mentioned it to my onc but she just shrugs! Also am very stiff in my hips and find it difficult to cross my legs when sitting down. Otherwise for the last 6 months I have been doing OK - bone mets disappeared on scan, and altho' I continue to have Taxol once a month and Avastin twice a month , I am able to do most things and am less tired. So the question is, so you think that this pain could be due to the Zometa? Thanks, Wish you all the best, Penny ... View more

Hi Debsincornwall, Nicky08 and KatieP, Thanks for your comments. I would say that I have probably now had 27 doses of Taxol, and about the same of Avastin over the last year. My onc just says continue as is for now. It is frustrating not knowing what will be, but since this is certainly better than what was, I just have to accept it. She has just been at the big oncology conference in Florida last week, so maybe there will be some changes. Now that I only have the Taxol once a month, my side effects are much more manageable, and it gives me the strength to continue. Sorry to be so vague. Penny ... View more

Hi Friends, I have been away from the forum for a few months as I found it was taking up a lot of time, and sometimes was too sad for me to deal with. I am happy to see that Debsincornwall is around. Just a quick update. I was diagnosed with bone mets in April 2008, and started weekly Taxol, Avastin every other week, plus Zometa every 4 weeks. I have had 3 PET scans since then, with the last one 2 weeks ago, being completely clear! WooHoo! I am on the Roche clinical trial. My oncologist has said that since it is working so well, that until it doesn't work anymore she wants me to continue with it. It has been adjusted so that now I get the Taxol and Zometa every 4 weeks, and the Avastin still every 2 weeks. My quality of life is so much better. I am swimming and walking again, I have energy, food tastes good again, and apart from heartburn, permanently numb toes and some tiredness, I almost feel normal ! I really thought that I was a goner and that I would have no real improvement. So everyday is definitely a blessing. I try not to dwell on whether this Avastin is good or not, I just know that for now it is working for me. I hope that should any other mets develop in the future, that by then there will be other drugs to try. My doctors keep telling me that this is a chronic disease, and that is the way I try to think of it . Wishing all of you all the best, Penny ... View more

Hi Starfish, I suffered 13 weeks of my nurse digging for veins in my poor arms, before she sent me for a port. It has been the best thing I ever did in that place! I had it inserted under local and a bit of sedation, and I would say that it was a bit of a struggle for the doctor. He certainly grunted a lot and there seemed to be a lot of pushing and pulling! Then the next 3 days felt like there was fire in my chest. But with the help of some strong painkillers, it passed and now I do not know that it is even there. Highly recommended. Penny ... View more

Dear Maria, Hi! I live in Israel and until October 2007 enjoyed almost 6 years of good health after my BC diagnosis in August 2001 at age 35. Had a lumpectomy, Taxotere with AC, rads, Zoladex and Tamoxifen, back then. When I was finally diagnosed in April 2008, after 6 months of terrible back pain, mets in lots of bones and a couple of lymph nodes in my abdomen, I had 12 rads to the lower back and to knock out my ovaries as I am ER+. Then I was signed up for the Roche trial and started at the end of May getting Taxol every week and Avastin every other week. I have had 2 scans since then with encouraging results - the last one showing little or no uptake of the radioactive dye. I feel much better and have been able to reduce my painkiller (Tramadex) to almost nothing - i.e 15 drops a day instead of 80! My onc. did not give me any other choice of treatment as she felt that this was the best that was available for me. The Taxol has been difficult to endure, but after the first 11 weeks, I started having breaks. I had 11 weeks straight, then a 1 week break, then 5 weeks and a 1 week break, 2 lots of 3 weeks with 1 week breaks, and now I still have Avastin every other week and the Taxol just once every 4 weeks. I also have Zometa every 4 weeks. This is way more manageable, and I have much more energy. I can walk again and feel my quality of life has really improved. Perhaps you can look into getting on the Roche trial? I wish you all the best on this horrible, difficult path. Penny ... View more

Good Luck Jackie. I have just read this thread and your other one on the same subject. I hope that things turn out OK. It took over 6 months for my back pain to be diagnosed as bone 2ndaries, and I was in so much pain. This last week I have had a lot of new pain at the top of my thigh, and it has interfered with my sleep. The tramadol that I take has not touched it, so I am hoping that it is not a new tumour site. I am going to go for a gentle swim tomorrow , actually probably more of a float! Will check back in a few days to see how you are doing. Best wishes, Penny ... View more

Hi. I have been on Taxol & Avastin & Zometa for the last 6 months. For the last 6 days I have had a lot of pain in one leg at the top of my thigh which has made it very difficult to walk. 2 different doctors examined me, and one was muttering about DVT. They hope that this is muscular but tell me if it gets worse to come back.I am not sure what "worse" means. So far there is no swelling, but it is scary. Any comments greatfully received. Thanks,Penny ... View more

Hi Dippykate/Kate, Sorry for the delay in responding to you. I find that I haven't the mental energy to pop in here more than once a week. Anyway you are very on the ball - I must say! Actually no, I do not live in the UK. I am from London, but I have lived the last 10 years in Israel. So I guess that they must do things a little differently here, probably more like the US. But of course, I love coming to this forum, and being able to communicate with everyone in my mother tongue, as my hebrew is not that great. Anyway with regards to the steroid dose, with my primary I used to take 2mg dexamethasone tablets, the night before, the day of,and the day after. I hated it. I gained a stone and a half, had a big round face, it affected my sleep and my dreams. This time around they only give me steroids in with my chemo treatment. So it is only once. Which is really a huge improvement. It gives me extra energy the day of, and the day after treatment, a very red face the day after treatment, and complicated dreams with light sleep the 2nd night after treatment. I have not had any weight gain this time around which makes me feel much better about myself. My tumours are in my bones and a couple of lymph nodes, so maybe this is why I can have less. But maybe it is worth you trying to play around a little more with the dose. I was very upset to read your very trying experience at the hospital. I have set up a webpage on yahoo, which many of my friends have joined. Every week I write an update of what is going on with me, so that I don't have to repeat myself a million times. Also I use the page to ask people for help. I have been extremely lucky in that a small group of my friends have always been available to take me to the hospital, stay with me there and generally run around doing all the bits that I find more and more difficult - like taking my blood to the lab, fetching the nurse when the bag is finished. They keep me company, take care of me and generally make me feel that I am not alone. I arrive at the hospital early in the morning in order to nab a bed, as they give me a strong dose of antihistamine (Nytol) just before we start which sends me straight off to sleep. So maybe you can try getting someone you know to come with you, as I think that it would make a real difference. The nurses are much less likely to treat you poorly if you have someone there to stand up for you. Sending you and everyone here cyber hugs and healing thoughts, Penny ... View more

Hi Gerry, I am on Avastin, Taxol and Zometa. I had Zoladex 6 years ago after my primary diagnosis for 2.5 years. This time around, when I had Rads 6 months ago, to my back for the pain they also irradiated my ovaries to put me into menopause. I am 42. Actually it has been very good, as I have had no menopause side effects at all. I asked my onc. last week about Femara, and she said that I was definitely not to have it while on the chemo. She actually didn't say why, but seemed pretty adamant! Hope that it is of help. Best wishes, Penny ... View more

Dear Deirdre, I wish you lots of luck , and hope that this new trial will go well for you. For the time being I am still on the Avastin/Taxol trial, and will have my 2 nd PET-CT scan at the end of this month. I began at the end of May, and my onc. has just reduced the Taxol to once every 4 weeks from 3 times every 4 weeks. The Avastin remains the same at every other week. I am hoping that the Taxol reduction will help me feel a lot better, as I am really beginning to suffer a lot from its side effects. Most particularly my leg has been giving me a lot of pain and I can only hobble around. I do not know what it is - muscular, new tumour pain, thrombosis or what? It is bad enough that it interferes with my sleep. Keep us posted on what the new hormonal drug is, I am sure that everyone here will be very interested. Best wishes, Penny ... View more

I get one dose of Steroids on Wednesdays in with my chemo cocktail, which is much better than the first time around when I used to have them for 2 or 3 days. The day of treamtment I also take Nytol so cannot stay awake and sleep the whole day. This is the start of my sleep pattern mess up, as that night I do not go to sleep before 1am. The next night I feel the steroids wear off , and if I have trouble sleeping I take 1/2 a Valium, but I do not have secondaries in my liver, so don't know if that would be acceptable for you My problem seems to be more waking up than falling asleep, as I have accepted that I feel a bit better in the evenings and therefore make use of this feeling by going to sleep later, and then I sleep away the morning! Hope that you work something out. Best wishes,Penny ... View more

HI all, Just checking in. Debs, your portacath experience sounds exactly like my one was a couple of months ago. Like you were in a wrestling match! The day after when all the anaesthetic had worn off it was even worse,like I had a fire in my chest. I took strong pain killers (Codeine and Paracetamol) on top of my Tramadol, and Rescue Remedy and a couple of days later I felt much better. Had to sleep with a bra on as my breast was pulling on the area. Now all the stress of having the nurse dig around for my non-existent veins is gone, and I can hold the newspaper with 2 hands and do the crossword puzzle! It was definitely worth the discomfort to have my bionic part put in - I am the Bionic Woman! I haven't got around to trying out the acupuncture yet, as it is one more thing to organise. So I saw my onc. at the beginning of last week for our regular monthly meeting. So far I have had 22 Taxol and and 13 Avastin, and I have been getting pretty fed up of the whole thing, especially now the weather is colder. So instead of having numb feet, I have numb, cold feet. The last time I saw her, she agreed to reduce my treatments from 5 weekly treatments and then 1 week break, down to 3 weekly treatments and 1 week break. I was pretty happy with this improvement, but this time before I could even complain (!) she said that she wants to reduce it even further! So now I get Taxol, Avastin and Zometa on week 1, Avastin on week 3 and NOTHING weeks 2 and 4!! WooHoo! I am a little afraid at reducing it so much, but she said that after 6 months many people come off the Taxol completely, whereas I will still be getting it once a month. I will also have another scan at the end of December.... My hair has now grown back about 3/4". I was told that it falls out initially due to the shock of the chemo, but because the weekly dose is lower it grows back. So this is a nice bonus. I wish you a speedy recovery Debs and will check in again soon. Penny ... View more

My fantastic mother died 12 years ago at the age of 62, as a result of her bc metastasising to her liver. We managed to keep her at home until the last 24 hours, when an ambulance came and took her to the end of our street where the St. John & St Elizabeth hospice is in central London. They were wonderful. At this point my mum was mostly asleep, she would wake up, take a sip of water, we would tell each other that we loved each other, and then she would go straight back to sleep. She seemed much more comfortable in the hospice, and as soon as a private room became available they moved her into it. I had to go home to be with my babies at 6.30pm, but left my Dad and brother with her. At 8.15pm my Dad called to say that she had passed. He said that she had been very restless 15 minutes earlier, the nurse had given her an injection which was probably morphine and it helped to calm her down, and probably tipped her over the edge. I was sad that I was not there for her, but happy that she was not suffering anymore. When I saw her later she looked very peaceful. I pray that my end will be similar, as it was reasonably dignified. I don't even think that she was in too much pain, not that she was ever one to complain - unlike me! She was even telling me about her childhood 4 days earlier, although she was obviously going downhill fast. I have considered writing a speech to be read out at my funeral by my best friend. To really thank the people who were there for me( and maybe shout out the ones who were a disappointment - tee hee!) and really tell it like it is. I have always loved to shock- this would be my last hurrah! Hopefully it is not for a while yet, but you just don't know with these damn secondaries. Penny ... View more

Hi Kay, Thanks for the acupuncture suggestion. I was going to one to help me with my back pain before it was diagnosed as mets, and it really helped a lot, so I will ask her if she thinks that can she do this. It would be a big improvement for me if it went back to just being in the toes. Thanks,Penny ... View more

Good Luck Anne. What does your husband want retested? When I had my biopsy done, they didn't take enough cells to know for sure if the tumour was still Her 2 negative, but my onc dismissed it by saying that it probably was, as it was originally in 2001. This freaked me out as the thought of not having the "best" treatment suitable for what I have seemed just plain stupid. So I begged and made a fuss, and in the end they did repeat it, even though it was after they had started the chemo. The result came back as the onc. had suspected , nevertheless it really helped me with my peace of mind that I was getting proper care. Penny ... View more

Hi Patricia, The breast nurse in my department said not to go swimming, but then my onc. said that I could go swimming! So I went swimming! Had no problems. Haven't been recently as it is too cold and it was an outdoor pool. I also swam with my head out of the water as I felt safer that way, even though I am a good lap swimmer. I had my 'flu jab a couple of weeks ago. First I checked that my blood count was OK, after a scheduled break and then had it a couple of days before my next treatment. I felt no side effects. I am cautious about going into crowded places - haven't been to the cinema in a year, and when I flew to Italy I wore a face mask on the plane. In 2001, when I had chemo the first time I caught what would normally have been a 3 day cold, but it took over 2 weeks to shake and I felt awful. So I am prepared to miss out on certain things if I can avoid getting sick. Best wishes,Penny ... View more

Dear Debs, Hi! I am sorry that I am coming in late to your bunged up part of the discussion! I have found that the best way to sort that out is to eat a couple of prunes at each meal until things get moving and then adjust accordingly. It is healthy, natural and tastes delicious. After 6 months now on Taxol, I would have to say that currently the worst side effect is the numbness in my feet and fingertips. It is really bad in my feet and hard to walk. My onc has prescribed me an antihistamine - TelFast to see if it will help. I am not sure that it is. Maybe it is stopping it from getting any worse, and the 1 week off in 4 also probably helps. Sending you good wishes, Penny ... View more

Oops forgot, also because of the phyto - oestrogens he says no soy milk. Penny ... View more