Breast Cancer Now Forum

Hi Polly, i developed the same last January which was about 7 months after surgery (5 months after end of rads). I had weekly MLD and did SLD daily. I also tried kinesio taping ( what physios use), but that made it a lot worse. It took about 3-4 months of weekly MLD to see a real difference and I still see the lymphoedema clinic every 6 weeks or so. It’s still a bit swollen but not nearly as bad as it was last year. It’s likely that the swelling is permanent, but keeping up with the treatment keeps it under control. My oncologist said sometimes the swelling lasts for 4-5 years and over that time very gradually returns to normal. The other thing I find really useful is Mobiderm , which is foam cubes wrapped in a strip of gauze. Put it in a loose soft bra and wear it overnight. It really helps bring the swelling down.   My lympho nurse told me that the effects of MLD are cumulative so it will take a few weeks for you to see a difference, so keep going with treatment. Even though you don’t see it working it probably is, by opening up new lymph channels.   hope that helps   ... View more

Hi,   i had chemo first, then a 4 week gap before surgery, then a 5 week gap until rads. I went away for a family holiday 2 weeks after my final chemo, and then 3 weeks after surgery, and then one week after rads. They were all uk based 7-10 day holidays, mainly visiting friends and family, so that I knew if I really felt unwell, I could shorten the trip and get home easily. I was absolutely fine after chemo and surgery, but had skin problems a couple of weeks after rads finished, when I was on holiday in the uk, so was glad I hadn’t gone further afield. I did go to Portugal about 6-7 weeks after rads finished and I was fine. Everyone is different through and after treatment, but my onc’s advice was to go on trips only if I felt well enough, and he suggested the best time was before starting rads. ... View more

Hi   I finished chemo in May 2017, but I got on fine with Abraxane. Yes, there were SEs, but they didn’t last. The chemo gave me really bad indigestion for the first day ( but fixed by gaviscon or rennies), I had some muscle weakness for a bit, and tastes changed and I couldn’t face certain foods. But overall it didn’t affect me too badly....I was just so glad to get off the steroids I had with FEC! ... View more

Hi,   I am not in the same situation as you re 3rd occurrence, but my oncologist changed my planned regime, which was going to be 3 weekly docetaxel or weekly Paclitaxol, as I couldn’t tolerate the dosage of steroids required. Instead I had Abraxane, which is also a taxane, but is usually given where people have an extreme reaction to the other two. It’s a quick infusion, about 30 mins, and requires fewer additional drugs with it.   It is expensive and requires approval from the nhs Trust, but try asking if it’s an option for you.   Tessa   ... View more

I have used Tesco Soaper Duper range, which is good. Don’t think they do shampoo though. For natural shampoos, I like Palmers from Superdrug. Superdrug seem to sell a much wider range of it than Boots. Kind Natured (I got it in Boots) also do shower gel and shampoo, but I found the hair products quite greasy. Or you could try the ranges in Holland and Barrett or other health food shops, but I find they are quite expensive and some have a very earthy smell which I don’t like!   Tessa ... View more

The 20mg pills aren’t that big (I still won’t try and swallow one though!), so I crush them and then mix with a small amount of water. I’ve found some brands have weird coatings so harder to crush, and they don’t mix with water (Mylan is worst for this). Wockhardt and Teva brands are easiest to crush.   Even if your GP is willing to prescribe the liquid version, you might find pharmacies have to order it in every time. I’ve had this with my chewable vit D tablets and its a pain having to wait 1-2 weeks for some prescriptions to be fulfilled.   hope that helps,   Tessa ... View more

I don’t work for a bank, but it is a FTSE 100 company. It’s written into my terms that for any sick leave of over a month in total per bonus year, bonus will be reduced. So for example if I had one month off sick, I’d still be eligible for the full bonus. If I had 3 months off sick, I’d only be eligible for 75% of my bonus.    Check your terms, or HR intranet if you have one. I expect it’s buried in the small print, but it is standard practice I’m afraid.   Tessa ... View more

I asked my GP about it, as I have problems swallowing pills, but she told me that the tamoxifen pills are crushable, which they are. It also makes it easier to take pills than liquid on holiday.   Tessa ... View more

Hi,    I know there is a monthly BC support group at Helen Rollanson Centre beside Springfield Hospital, but I haven’t been to it as I’m in north Essex.   Other than that, Colchester Hospital has a monthly support group but that’s a bit further for you, and I haven’t heard of any others. Would the hospice in Chelmsford know of any support groups?   best wishes   Tessa ... View more

Hi Kath   That's a bit of a trek every day for rads, but at least you will know that it's for a shortish period of time, and each session is usually really quick (I was in and out within 15-20 minutes).   Hellen Rollanson Charity have a support centre in Bishops Stortford. If it's anything like the Chelmsford Centre it's excellent. I don't know if the Bishop Stortford one has support groups, but they do have complementary therapies and counselling available. Might be worth giving them a ring and see if they can advise you.   Best wishes   Tessa ... View more

Hi Kath   Have you had your rads planning session and CT scan? That will determine which area gets treated and how many sessions you have. Generally anything between 15 and 25 sessions at 5 per week is pretty standard. Your rads team should give you advice, keep checking your skin and give you any creams or dressings that you need.   I am in Essex too. When I was diagnosed 2 years ago, I didn’t find any local support groups, but I think one started at Colchester Hospital last year, and I believe there is also one at the Helen Rollanson cancer centre in Chelmsford. Both are monthly meetings. Sorry, I don’t know about Herts or Cambs as I am in north Essex.   Best wishes   Tessa     ... View more

Good evening both,   We are now on half term too......kids are already becoming fractious ( I.e. Bored, despite cupboards full of toys, books, games etc)! But we are well used to it now 😊 . They are at the age, 7 and 9, where they are pretty independent minded but still need looking after.    I do a lot of walking, which helps with the lymphoedema....although my therapist said that walking can make arm lymphoedema a little worse because of the effect of gravity. Mine is mainly in my boob and under my armpit though. It's all a bit of balance re the exercise. I got some very cheap Rosemary Conley DVDs from Amazon and if the weather is rubbish, I do half an hour of them during the day when I'm in the house on my own. Some have some good arm and chest exercises which I find helps. Or I think it does, but who knows!   Our hospital also runs an exercise programme for anyone recovering from cancer. I haven't been but a couple of my friends have and they say it's fantastic. After the exercise bit, they then do 30 mins of relaxation and meditation ...apparently some people fall asleep....that would be me! Peggy, re mld therapists, I've seen 3. I tried one privately but I didn't think the treatment was effective, so turned to  another who is fantastic. But I also have 4 shorter sessions on NHS and that's not too bad. So it's worth trying more than one therapist if the first one doesn't seem to be having any effect. They all work differently depending on which mld school they trained under. I agree that we should be able to get treatment early on, but lymphoedema services are generally underfunded on the NHS, and often only provided for more severe cases. So then you end up paying privately, which isn't cheap, but I am so desperate I will pay for a session every 2-3 weeks.   i think the foam cubes are one type of thing you can put on the swollen bit. You also get bags of cherry pips! And then there are what's like corrugated cotton pads that come in various sizes. I had a google the other day and was amazed at the variety of things you can buy.... The problem is knowing what's going to work and what isn't. I think some of it is trial and error. The tape was definitely an error for me ☹️   Hope you are both enjoying the weekend, and the weather improves. I'm tired of the cold, wind and rain. Roll on Spring 😊   Tessa ... View more

Hello Clair and Peggy   I'll send some snow west to you 🙂 We have had a sprinkling overnight, but had disappeared by lunchtime. It's a bit rare here (east anglia).   I've just come back from seeing my private lymphoedema therapist. She thinks it was the brand of tape that caused the reaction and she only used Kinesio Tape as it's been thoroughly developed and tested over the years. They all look roughly the same to me!   Anyway, she was quite shocked at the level of swelling that the taping had caused, but managed to massage a lot of the lymph fluid away from my side and armpit, so I am hoping that with some SLD it now settles down a bit.   I'm going to try using the compression bra/ vest thing that i was given with a small amount of the foam cubes at night to see if that also helps. OK, I'l be honest, I'm hoping that it will help so that it cuts down on the amount of time I have to spend doing SLD and arm exercises 🙂   I can't say I've noticed an achy pain under my collarbone. It might depend on where your surgery was. Mine was upper outer quadrant, near my armpit, so any pain and tenderness seems to be there and towards my back. But nerve problems can cause pain signals some distance away, as I found out a couple of years ago when I hurt my shoulder.   Tessa ... View more

Starfire   good luck with the abraxane. As I understand it, any allergic reaction to taxotere or paclitaxol is due to the carrier agent ( I seem to recall its bound in a castor oil solution), whereas abraxane is bound in albumen, which is far less likely to cause a reaction. Hope that gives you a little peace of mind.   tessa  ... View more

Ladies   Re insurance, Eurotunnel was the absolute best for European cover (£85 I think for a year for whole family) and NO questionnaires, but you do need to simply confirm you are fit to travel (i.e. doctors would not say don't travel).   I have just purchased annual worldwide cover via Alpha travel insurance and they were the cheapest (for the same level of cover) as some of the more well known specialist brands. You have to do a lengthy questionnaire on line but it was pretty straightforward. Think it cost about £150 for full annual worldwide insurance (inc Canada, and USA) for our family of 4 and mine was slightly higher due to another family member's medical condition. You can choose your level of excess too, which will affect the price.   HTH Tessa ... View more

Hello Ladies   I'm a year on from you all but I saw your comment about Abraxane, Starfire.  I was dx in Jan 17, had 3 rounds FEC and then was meant to be on Taxotere, like most of you, but my onc got me on Abraxane as I really really struggled with any level of steroids. Abraxane doesn't need any. I had 3 rounds of Abraxane.   I didn't have too bad SEs on either FEC or Abraxane, and I'd say Abraxane was pretty straightforward. The infusion is quick - no premeds needed, so it was 30 mins. I gave up on the anti sick meds beforehand too, as I didn't suffer from nausea (other than that caused by anti sickness meds!)   The main SEs for me were a funny taste with certain foods and a lack of appetite, that lasted about a week after each dose. Also I had quite a bit of leg weakness for the week after each dose, but this subsided in the remaining 2 weeks. I had very bad indigestion immediately after the infusion but taking Gaviscon for a day put paid to that.   Hope that puts your mind at rest, Starfire, but if you think of any other questions please lask away!I can remember most of it, although I do try and consign that wonderful time to the back of my memory!   Tessa ... View more

Hi Peggy   Skating sounds fun - something I have never had the courage to do, and not going to attempt it now I'm older (and supposedly wiser)!    My swelling increased in January - 6 months after my lumpectomy, but I am absolutely sure that's a direct result of the surgeon telling me to firmly massage the scar tissue. It hurt, so I only did it for a short while, but it was enough to do the damage. After the awful swelling at the weekend, after I removed the tape, I have noticed that it's subsided a fair bit - which could be a combination of the MLD working (i,e, it's stimulated new lymph channels), my own SLD, using the foam pads plus exercising my arms and shoulders. It's still not right though. The MLD yesterday was helpful, and I came away with a compression bra (lipomed I think it's called). I wore it at night and it was very supportive and comfortable. It's not supportive enough during the day, so I'm back on sports bras. I've decided to see a private MLD therapist in conjunction with NHS as I'm finding one treatment a week at the moment might not be quite enough (or rather, I'm very impatient to see a result!)   What I do notice is that if the swelling is bad, it moves into the area under my armpit, under my shoulder blade, and I also get nerve sensations in my upper arm. Then it seems to subside back to my boob.   WHen did you have your op? The can use laser treatment too, but I was told they don't do that until you are a year past rads, which I am not.   Tessa ... View more

Hello Claire and Peggy   i am not too bad. I have had kinesio tape on since Monday and peeled it off today. Within 10 mins it looked like the skin was all swollen, so I'm not sure what's going on there. I thought the tape was meant to help reduce the swelling not increase it! I'm at the lympho clinic on Monday for mld so I will see what they say. Mld seemed to be working well after 3-4 treatments so I think I will carry on with that and hope for the best.   hope you are both having a lovely weekend.   Tessa ... View more

Hi peggy   Sorry to hear you have cording. I seemed to have a tiny bit of that under my armpit for a little while after surgery, but doing all of the shoulder stretching and having mld seems to have smoothed it out.   i have also been recommended swimming but I can't swim very well. That's no excuse though as the nurse said just standing and moving arms against water would help. My two kids (7 and 9) love swimming so maybe they will take me on our next holiday! It's too cold just now!   i went on the moving forward course too, and found it fantastic, not only for advice but meeting other local women. Some Macmillan centres run a course too. I'm in Essex and they do in this area. I think it's a 6 week course but it covers all cancers while moving forward is BC specific. Maggies cancer centres offer similar. So there are different options but they are not always well publicised.   its been a beautiful day here so we have been out for the day in Cambridge. Sunshine and walking around always seems to lift my mood 🙂   tessa ... View more