Thanks for that Graham,
I am hearing more stories about the effectiveness of lenalidomide reducing the longer you use it, so what our consultants said makes sense. Thanks for sharing your experience and good luck for the future.
Brewy.
Hi rebeccaR,
Wow 11 years, that’s amazing. You must be made of strong stuff. Long may it continue. Thanks so much for sharing your positive experience.
Thank you for that Mulberry. I know there are no hard and fast rules when it comes to MM and we’re all so different! But it is good to know that at least it’s possible to have a good length of remission without maintenance.I hope I’m one of the lucky ones!
P.S. yes I did have 4 drug induction.
Thank you for that Derbyshirelass. It is really good to hear that your husband did so well without being on any maintenance treatment. Hope he continues to do well in the future.
Hi Rabbit,
Thanks for your reply. Mine had always been a decent level, over 100 up to starting lenalidomide last September and they have just steadily decreased since then, occasionally going up when I stayed off the lenalidomide. This is the first time they have gone down despite not taking it for a month. I shall discuss it with my consultant. Thanks for your advice. Long may your remission continue.
Hi Sheldon71,
Sorry to hear of your diagnosis. I was also 52, nearly 53 when diagnosed. It came completely out of the blue for me as I had had no previous health issues at all. It only came about through a series of tests when I went to give blood and my haemaglobin levels were low so it was a total shock to me. But being relatively young and fit meant that I coped with all of the treatment well, the chemo, the stem cell transplant and the DDVT cycles following that. It was a long 12 months but I just kept telling myself there would be an end to it and then I would hopefully be fit and well again and in remission for hopefully several years. And that’s where I am now, on maintenance treatment and feeling happy and healthy. We’re flying off to Budapest for a few days next week, my first holiday abroad since diagnosis 2 years ago. So you will still be able to do all of that living, just let the medicines etc do their job. Treatments are evolving all the time and people are living longer with this condition, so have faith that us younger ones may be around to try further new treatments in the future. And one day we have to hope that they may even find a cure!
X
Hi JB,
Thanks for your reply.
My hospital has never had anything to do with my vaccines, I was instructed to get them done via my surgery, obviously different authorities have different procedures, but this issue of “original vaccines” is what I’m struggling to get clarification on. What exactly did they tell you an original vaccines was, how us it different to a booster? My doctor just keeps saying there is no such thing, a COVID vaccine is the same whether it’s your first or fifth! It’s actually driving me bonkers now!
Thanks,
Brewy.
Hi, I have always thought that unless your consultant says that there is a problem with any side effects from treatments that may impair your driving, that you don’t need to declare to anyone that you have cancer. I have chemo induced peripheral neuropathy and that is on the list of medical conditions you have to declare to the DVLA and on car insurance. It hasn’t been a problem, I had to fill in the DVLA forms and send my licence back and they sent me one back which only lasts for 5 years. When I told my car insurers this they said it wouldn’t affect my premium and there was nothing extra to pay, but I do have to declare I have a limited licence when renewing. Hope this helps.
Hi Mulberry,
I’ve just read your reply about travel insurance and was so interested to read your last sentence which said “myeloma is not a terminal illness in insurance terms”. I didn’t realise this and have been put off, so far, in going abroad because I have seen that the clause that you may not get insurance if you have a terminal diagnosis and have been given a prognosis of life expectancy. I was given an 8-10 year prognosis by my consultant when diagnosed 2 years ago, but it was also made clear that no one can really say how long we have and it is different for everyone. So do I declare the prognosis? I’m currently in remission and just on maintenance treatment. No other health conditions. Any advice on this subject gratefully received!
Hi GC
Nothing wrong with asking a question however mundane! It all depends on whether you are having a Hickman or a Picc line. I was told Hickman at first so went out and bought button up pjs but then it was changed to a Picc line. So you definitely need short sleeves with that. I chose to sleep in a nightie (cooler), then wore smart, short sleeved PJs in the day. There was a few ocassions when I needed a bag of fluids overnight but I just asked if I could change into my nightie before they hooked me up.
Hope that helps.
Brewy.
Hi,
I had my SCT in February this year and was in hospital for 3 weeks which was better than anticipated as I was told it would probably be a month. I have to admit that for the first 5 days after the transplant I was feeling really well and thought I would sail through, but then the side effects did suddenly kick in. The worse thing for me was the awful lack of appetite and feeling of nausea. This lasted even when I came home for a further two weeks but I’m pleased to say that it did pass to my relief and I’m now eating normally again. Due to that I probably did lose some weight but it wasn’t enough to be concerned about. The doctors wanted me to drink the protein drinks and shakes but just the thought of them made me heave and there was never any pressure to have them. At one point I was surviving on Diet Coke and Haribo, both of which I never touch normally! The staff were brilliant at making me a slice of toast whenever I felt I could stomach it. I did have diarrhoea but it lasted less than 3 days. I never suffered with the sore mouth but did use the mouthwash I’d been given religiously. I’d already made the decision to shave my hair before it fell out so that wasn’t an issue for me. The fatigue was bad and I found it was worse when I came home, probably because home is more than just one room, unlike in hospital and it took it out of me just moving from bed to bathroom! Hopefully you won’t suffer too much and will think, just as I kept telling myself, all these side effects are only temporary. It may feel a rough ride but we all hope it’ll provide us with a stable future for the foreseeable so it’s worth it. Good luck.
Brewy 36
Thank you for your last post Jane. It was really good to hear of yourself and people in your support group doing so well. I find it very reassuring to hear about people who have gone several years in remission.
Liz
Hi Cath,
I hope I can answer a couple of your queries although, as we keep being told, this is such an individual cancer and everyone is different and so there are no generic answers.
I think SCT is probably all down to bed availability. My harvesting was done in November and I was told mid January for my SCT but it was actually mid February before I was admitted but I had weekly blood tests in between which always came back stable so I was told there was no need to worry. In between harvesting and SCT I actually felt fighting fit and a bit of a fraud when people asked how I was doing! It came at a good time because it meant I could really enjoy Christmas. So I guess you could go to work if you wanted to? I made the decision when diagnosed to give up work there and then. We fortunately didn’t need my wage to survive on so my husband and I decided we would both prefer to be doing more enjoyable things than working from now on!
I’m also hoping the innoculations can be done quicker than 6 months so that we can go on holiday but I’ve been told I shall hear from my GP about those? Again, may be this is different according to where you live?
With regard to long term prognosis – I asked the day I was diagnosed and was told 8-10 years. This shocked me quite a bit as I was only 52, but I’ve come to terms with it, especially as there are so many promising stories about people who have had longer remissions times. We must have faith that the excellent research being done in this field will be beneficial for all of us.
Hope this helpa. Good luck with your treatment.
Liz
Hi Cath,
I don’t know if one of the forum volunteers can clarify this because my experience is different to Lottie’s. I left hospital nearly 3 weeks ago following my SCT and I wasn’t told anything about 100 days isolation. Admittedly I don’t have any contact with young children and my husband and I are retired so we are pretty much isolated anyway. But I have had several visitors at home since coming out. Only 1 at a time, apart from my parents, and I obviously made it clear that no one was to come who had any symptoms or been around anyone who was ill. My nurse told me to just be sensible and avoid busy places such as restaurants and shops but I still have to visit the hospital for blood tests and treatment and there is nowhere busier than there! I have my monthly consultation next week so I will mention it then and see what they say. Good luck,
Liz
Hi Lottie,
Thanks so much for the update. I last posted in January saying I was most worried about the Hickman Line and then they decided a Picc Line would suffice after all! So I was admitted last week and had the melphalan last thurs and successful transplant the following day. So far the only side effect has been nausea and fatigue. The hospital staff have been brilliant at just making me a slice of toast when that’s all I fancied. I actually started on the protein shakes ok but when the nausea kicked in I couldn’t even bear to look at the bottle! They are finding some other varieties of shakes or juices which I can try today. I am armed and ready with things waiting for more nasty side effects, I think better to be prepared then pleasantly surprised if they aren’t so bad! Good luck on your continued recuperation.
Liz
