Dear Amelie,
Hi – this is Eva from Scotland. I haven't used Thalidomide as maintenance, but I've had it after relapse as a treatment, together with dex. I've been on it for a year. Many patients get peripheral neuropathy( nerve damage), while on Thal. I've had tingling in my fingers which has moved to my toes. About a month ago, my feet felt 'dead', when I first got up. I would stumble around for a while as if my feet were asleep, and then, in time, I would begin to walk normally. I was concerned about this and started to read what I could do about peripheral neuropathy. I decided to follow a protocol recommended from the States. It involves Vit B, carnitine, iodine( sea kelp pills), magnesium and zinc, alpha lipoic acid( yes, I know, not as the same time as Velcade, but I'm not on Velcade at the moment), and VitE. It's been a hassle to swallow all these pills, but I must say that after a couple of weeks even though I still have tingling extremities, I stumble around a lot less when I get up. My feet are noticeably less numb. I find it almost difficult to believe that these supplements could have helped me so fast and I keep wondering whether it's all a coincidence. My dose of Thal was 200mg a day for about six months, and now 100mg a day for the last six months. My Thal is is not considered maintenance, but consolidation.
Another possible side effect of Thal if used longer term is blood clots, so I take a low dose aspirin ( 75mg) a day. I also have some water retention, some fatigue, and my heart beats, well, in a more laboured way. But in many ways I'm doing well on the Thalidomide.
Good luck with John's transplant.
Eva
Dear Dai,
Just wanted to say that my light chains yo-yoed for a few months after my relapse when I was being treated with Thal and Dex. The variations were even greater than yours. My consultant said not to worry. Eventually my light chains settled down. I've been on treatment for a year now since relapse and don't know what will happen next. I'm coming to London to see my onc in about ten days- I live in the north of Scotland. Fortunately, I can walk quite well now that I'm off dex: I was one of these people who reacted very badly to dex withdrawal.
Thinking of you and Janet as well,
Eva
Dear Cinzia,
I'd be delighted to write about my treatment options, and about Melbourne, but do you think it would be ok if I wrote to an email address?
Best,
Eva
PS My email is evayouren@lineone.net
Dear Karen,
Have any of your doctors raised the possibility of myeloma? It's often a very difficult illness to diagnose. What might be significant is not just whether the IgA immunoglobulin is raised, but whether the others are suppressed( IgG and IgM). A PET scan is a good idea as it might pick up lesions in your bones if you have any. However, some myeloma patients don't have any lesions. Myeloma is a cancer of the plasma cells in the bone marrow. For this reason, a bone marrow biopsy is a good idea, as if you have a very high level of plasma cells in your marrow then it might mean that they had proliferated. I've got myeloma, and recently when I had a relapse, my bione marrow biopsy showed that I had over 70% of them. I was put on immediate treatment and after a year the level went down to about 5% which was considered reasonable.
Another test which is not that difficult is beta2 microglobulin. That can be measured via a blood test. If your level is outside the normal range you could have myeloma, but it could also be an indicator of inflammation caused by an infection. I suppose the important thing is that you are seen by someone who is really familiar with myeloma and who tests for it. Some of us have had quite a delay with diagnosis.
I would like to reassure you that in the last four years two new treatments for myeloma have been approved in the UK. If you've been reading studies on the internet then please remember that information about prognosis is usually based on older treatments. Some patients will respond to a number of sequential treatments or to a stem cell transplant, and they can have many of their potentials restored for varying periods of time. There are also two more new meds that are likely to be approved in the US soon, and the UK may follow. I know I sound very circumspect with my wording, but myeloma is a very individual illness.
Best of luck,
Eva
Hi Cinzia,
This is Eva from Scotland. I have plain myeloma but I'm writing to you because I have spent a huge portion of my life in Melbourne. I've often wondered what treatment would have been like if I'd stayed in the country of my birth. In Scotland I think we can get Velcade at relapse. I have heard of someone in the UK get Velcade for induction treatment after they had trouble tolerating the other meds.
Which part of Oz are you from? I was also diagnosed at a fairly young age – 52.
Eva
Dear Tina,
The problem with stairs had diminished a lot even after being off treatment for just ten days. The bloating from dex – well, my face lost the rounded look after two months off it. However, even five months later, I'm still a bit over weight and a bit bloated. I'm on Thalidomide and since I add about four to five pounds a day( which I always lose overnight), I've figured out it must be water retention. There is also the weight gain from dex which is a problem. I ended up reducing my calorie intake to a half of what it was while on dex, and mysteriously, I still wasn't looking thinner. The only way to lose weight is to exercise vigorously each day.
Don't beat yourself up about looking weird while you're on dex – it's unavoidable. I do regret all those meals during which I over-indulged wildly while on dex. I was staying in London while I had my intial treatment after relapse, and when I had the energy, we walked to a family run Thai restaurant where I was spoilt rotten with smoothies, desserts and meals that were never less than three courses. Next time I'm on dex I will chew on cardboard and carrots all day, I promise!
Eva
Dear Dai,
So sorry to hear you're going through this. I hope you've got a good book to read…. Let us know what happens.
It's always difficult to know when to report to hospital! When I was on my induction chemo I got temperatures over 38 a number of times. I went to the local surgery and I could tell they felt it was too big a responsibility to decide what to do with me given the myeloma. So each time I got bundled off to hospital which is an eighty mile round trip. On the first occasion my temperature dropped about half an hour after I arrived there. I was kept in for a very uncomfortable night with lots of tests on my heart etc. I remember sitting in a chair with electrodes taped to different parts of me while other patients in the ward coughed, moaned and spluttered their way through the night. In spite of how I dislike being 'interned' anywhere, the next time my temperature hit 38.7 I told my local doctor about it and before I knew it, I was on my way for a repeat of the first experience. I never did find out what was causing the weird elevation in temperature. Maybe immunomodulatory drugs cause a drop in neutrophils and the body has to fight harder to resist infections….
Good luck,
Eva
Dear Etta,
The injections for mobilisation can not only cause pain but also flu-like symptoms. The actual harvesting doesn't seem to have many side-effects. Sometimes if the procedure creates a shortage of calcium then there can be a slight tingling in the lips. Staff at the hospital then can offer a calcium pill. The harvesting can be a bit boring as it can take hours, so bring something to read or listen to.
Best of luck,
Eva
Hi Mavis,
Delighted about your results. I think the withdrawal might be referring to going off dex so fast. The body gets used to being on dex even if it doesn't like it….. So I've heard you have to lower the dose of dex gradually or it could create problems.
Best,
Eba
Am delighted Tom. Hope you both have a wonderful time,
Eva
Dear Jean,
Maybe my memory is playing tricks on me, but I think that Fluconazole is something a doctor can prescribe for oral ingestion that might reduce thrush. There are also topical remedies, creams that can be applied.
Eva
Dear Keith,
Let us know how it's going. And now that your holiday is over, remember to do things each day that are an expression of who you are, even if you can't get around much.
I used to run when I was younger. I'm on Thal but not on Dex at the moment and I've set myself the task of walking a certain distance every day. It's been very good and I don't know if this is a coincidence, but my neuropathy feels better since I've been exercising.
Eva
Hi Onlyme,
I'm so sorry you're going through this. I know that the love and support you're showing your mother will help her. Sometimes words fail us and there is only our presence and what it signifies.
Eva
Dear Wendy,
Hi – this is Eva. Am cooking a meal at 23.18 which is a bit mad but there you go. So this will be short. You can't stop ruffles and keep curls in my opinion. But – you can experiment with a band or with a banana clip. Both of these have worked wonders for me at different stages of my hair growth after transplant. Some people look marvellous with very short hair( like Helen!), but I don't. I've had to grow my hair a bit longer and then do things with it. If this doesn't make sense, you can email me on evayouren@lineone.net and I can send some photos of different styles I found helpful at various stages of my myeloma journey.
Eva
Dear Siobhan,
Will be thinking of you, your family, and Bridget, on that day.
She was a wonderful person and most of us didn't get a chance to fully appreciate all the things she was.
I'm sure that some of her special qualities will live on in future generations.
Eva
