Breast Cancer Now Forum

Hi Christine I didnt know Herceptin could cause insomnia. I too have had insomnia since about the time I started Herceptin. Just assumed it was a reaction to dx and all the chemo etcetera. I seem to sleep for about 2 hours wake up. Go off again and so it goes all night every night. I also didnt think doctors would prescribe anything for insomnia. Your advice would be welcome. ... View more

I am going to Malta in May. I understand I should get antibiotics from my GP to take just in case. Is this correct? Also why aqueous cream. Cannot any old cream be used. Is it in case of an allergic reaction. Many thanks ... View more

Swelling in my hand was the first I noticed. And then I too was dx with lymphoedema last Dec just 7 months after removal of all lymph nodes. I do wear the sleeve sometimes. But find the most effective treatment for my hand is to rest it on a cushion preferably two at night when watching tv for about half an hour. I also seem to swell up! when on car journeys - as a passenger. Again I take a cushion with me and this seems to prevent the problem. The idea is to raise the arm to heart or above heart level to encourage lymph to drain back down. I have found (apart from on here) support from professionals for lymphoedema very limited and it is very much trial and error and managing your own symptoms. I hope you find the cushion tip beneficial too. ... View more

Encouraged to hear you had a similar amount of lymph nodes and still ok after five years. Thats what I hope for and why i am and have taken all treatment. Interesting that HERA showed less recurrence for Grade 2 than Grade 3. From what I can see once you have positive lymph nodes and are HER2 they seem to give all the treatment regardless of grade. I was told they are throwing everything at me. I guess they do not definitely know what works and what doesnt so if you can take it they will give it. Its as simple as that. ... View more

Suzy I hope they do not find anything. It may be of some assurance that I have heard that they take no chances once you have had bc and if they see anything they think might be suspicious they double check it to be on the safe side. Certainly this was the case with a friend of mine. Interesting you had an MRI. I am also thinking of having this rather than a mammogram. Mammograms and I was told this by my onc cannot see lobular very well. Also should I get secondaries I feel MRI will pick this up much earlier. I do wonder how long my lobular had been there bearing in mind I had a mammogram only 15 months before and nothing was found and then I find it and by then its in six lymph nodes. Needless to say as you can probably tell I do not have much faith in the screening. They keep saying it saves 1400 lives but 12,000 die of bc and most of the people I have met found a lump themselves. ... View more

I agree the internet support is brilliant for lymphoedema if nothing else. The support from the specialist I was referred to apart from sitting and listening was a bit lacking I feel. There is much more info from yourselves and other sources. thank you ... View more

Lulu To back to your original question regarding diet and exercise. I have and am taking all the treatment as advised. I am on Arimidex but understand I am only slightly hormonal. I am also having Herceptin but been told it only adds an extra 7%. However I am just coming up to 57 dx Feb 08 with lobular Grade 2, with 6 lymph nodes. I had put on 4 stone since my mid 40s and feel that together with not having children this could well have been a contributory factor. Just before dx I felt I was on borrowed time regarding weight and unhealthy eating. Since dx I have lost half a stone which I am keeping off. I must be unique as everyone else seems to put on weight but on taxotere I experienced the awful taste in mouth and got that I couldnt be bothered to cook let alone eat. So I was on reduced eating for about 6 months. Since finishing rads which I thought gave far greater than 13% I have altered diet. Eating less fat, walking at least 30mins a day, drinking green and red bush tea for antioxidants, eating a square of 85% cocoa solid chocolate a day, eating 3 or 4 helpings of green vegetables a week and cutting down on cakes, sweets etc which were my downfall. Havent got back to gym yet. As I have developed lymphoedema and understand any loss in weight makes this easier to control I am trying to do everything I can. I have never smoked and rarely drank alcohol. Neither did I take the pill or HRT. So apart from the weight and lack of children I had no other risk factors. Only time will tell if this is of benefit but as I would also like a reconstruction I feel any reduction in size will be beneficial and help any future health issues. In fact I do not feel enough help is given about diet at all. Despite Cancer Research saying that losing weight and taking more exercise can make a 50% difference to recurrence. When I was dx I asked the bcn if it would make any difference if I lost weight. She said no. And that was it. How can they as health professionals say that. It is so negative in every way. To lose weight has all sorts of benefits as we know and I think they should be positive and encouraging. ... View more

I am not saying it increases the aggressiveness. Only what I was diagnosed with. I took it for 8 years. I have started after chemo and rads taking it again. It certainly does help with the hot flushes. ... View more

Incidentally Starflower oil is even higher in GLAs. I was advised to take this by a nurse at the hospital about 8 years ago when I had lumpy breasts. I too was diagnosed later with Grade 2 cancer. I do wonder if there was a link. But on the other hand I am also HER2 which makes things more aggressive. ... View more

Hi Christine I did have my last 2 out of 4 taxotere with Herceptin. As I had read that in America they believed it increased the efficacy and also I believe they are routinely doing this in Europe for those who are HER2 but not heard of it much over here. The trouble is if you ask if it is necessary to have all treatments emotional blackmail seems to be used in that you are made to feel that if you do not have the recommended treatment then there is a high chance of it coming back. I was Grade 2 with 6/21 positive lymph nodes as well as being HER2. I asked onc what difference being Grade 2 made and he said not a lot given lymph node involvement so I feel coupled with being HER2 I have always been made to feel my long term chances are not good. So I take everything. ... View more

Hi S Thanks. I'll just do that. x ... View more

Hi S Many thanks for your advice. As you can tell I am very despondent at the moment. I am going to go and see someone privately I think. In the meantime I am doing all the things SLD etc & sleeve. But I have been told none of them may work. So no encouragement there. In fact NHS seems to be lacking in encouragement full stop as far as I can see. If only they realised what effect this has on moral. I havent checked for your pm yet. Not quite sure how to. But thank you for taking the time to send it. I will definitely get to grips with it! Take care & once again thank you for your invaluable advice to me and all of us in the same boat. x ... View more

This may be a silly question but how much bigger would one expect the dominant arm to be anyway. I was told to wear the sleeve all the time as the arm would definitely get worse if I didnt. I am so scared to do any of the things I used to do for fear of it worsening. Really the whole thing is dominating my life. I did take measurements of upper arm before op and measured it again a few weeks ago and it is still the same. ... View more

I too have had problems in the left arm due to overuse and carrying heavy things as unable to do with right arm now. Also Arimidex is listed as causing carpal tunnel syndrome which causes pains in the wrist and pins and needles. ... View more

Hi I do not know what the advantages are really. I was dx with lobular and the treatments are the same. In fact I have had to have everything and am still getting it in the case of Herceptin and Arimidex. In fact I have read that lobular is often picked up later and then more likely to have spread to lymph nodes hence more intensive treatment. Certainly in my case. I did read one article in the Mail! how true I do not know that lobular is more easily treatable. I too would be interested to hear others comments. ... View more

HI Lynni Many thanks for advice. I have two new sleeves and they are much more comfortable and seem easy to put on. They are made by Medi but not made to measure. I too fold the gauntlet back which is a lot of the time. I find the gauntlet very inconvenient. The difference between right hand (affected and dominant) and left is 1/8 ins. I am going to see if I can get second opinion after reading other comments. Take care ... View more

Hi Ness I too finished taxotere over 4 months ago and still have sore feet and I am on Herceptin. I also still have slight peripheral neuropathy in fingertips and nails are just starting to fall off. I think it takes a long time to get taxotere out of system. I do not get any side effects from Herceptin that I am aware of. But then its difficult to tell with everything I have had and am having. I am on Arimidex so get aches from that. Take care ... View more

Hi Bahon Many thanks for your helpful comments as always. We know we can rely on you for down to earth sensible advice about this ***** condition. I received two new sleeves yesterday. They are pretty easy to put on. Getting used to them is another thing. How can you do normal things in them? Cooking? make pastry, washing hands, etc etc. I find them and it very restricting. You might be right about another condition. Everything seems to have got worse after end of rads. I will pm you for the name of that private lymph physio you know. Very many thanks. ... View more