Hi Tom
So, do you have soft tissue lesions? Did you have an MRI scan or ct scan to exclude lymphomatous lesions at the beginning? The diagnosis is sometimes difficult at the edges of the condition but in those situations the decision has to be made and treatment started, usually based on clinical need for treatment. Also how the disease progresses and relapses is a very different kettle of fish as the cells are immune system based and seem to have a mind of their own. You really need to sit down with someone like a specialist nurse who has time to explain what is happening to you. As far as I can make out from the literature, which while it is robust enough, it is currently looking at very small numbers of atypical patients and would need more testing to see if their hypothesis holds in different groups, in different countries. I do think you are alarming yourself a bit, but I understand that, I exhausted the library in the early days, doing the same thing. You must remember that you have as much chance of this treatment working successfully for you as the next person, and just use the time you are given to do the things you planned, until the treatment stops working, whenever that is.
Try not to worry too much about it, at this stage you have little control over anything I know but you can beat yourself with the 'prognosis' stick for only so long. In the meantime you just have to get on with the endurance test which is the treatment. I'm sorry if this sounds a little harsh I don't mean it to sound so bossy, I think what I'm trying to say is that we can't be looking for 'other' treatment or causes once we start on the treadmill of PAD etc as this is the route which has been set for us, and it is our first and hopefully best, successful route to remission, to chop and change around is not an option and so makes worry only an additional burden.
It is a horrible emotional roller coaster on the dex too>:-(
Love Helen
Dear Keith
You are certainly going through the mill at the moment, I hope things settle down a bit for you, soon
Love Helen
Dear Tom
When I was diagnosed I was told that I had 'a myeloma' . Subsequently it has been described as oligo secretary light chain myeloma IgA Lambda, roughly at stage 2-3. This means that i produced little detectable paraprotein or light chains but bone marrow biopsy was 60% disease. I needed to know all this detail at the beginning while trying to make sense of the whole 9 yards. Since then though, the type seems to be immaterial really as the treatment is the same for all so far, ( though new genetic diagnostics are suggesting that some myelomas do better with certain drugs rather than others, and some myelomas are more aggressive than others, but outcomes for all are still unpredictable. I.e. someone with an aggressive type can do well and someone with a less aggressive sort can do badly. Now however this theory is not tested enough yet for those of us in the system, we have to have the best of what is currently available, which on the whole we do get in the uk) anyway, as each of us is different, treatment usually starts if end organ stage is reached in either kidney, bone and raised calcium or anaemia. There is usually more than 40% bone marrow ablation by the myeloma cells at this point. I understand solitary plasmacytoma to be 'extra medullary' myeloma, as mm cells are seen most in the medulla or marrow of the bone. These tumours can be treated locally with radiotherapy, sometimes never recurring and sometimes turning into full blown mm. I would ask for clarification from your consultant, as Eve says though, staging is not considered the best assessment tool. Also I don't consider my chances to be any different from anyone else's with this disease, and as she also says, treatment still carries the longer and better outcomes. After all 40 years ago when I started nursing, 2 years was seen as good survival with mm, now we look, as a group at 5-10 years or more, but no one know who will get 2 years or who will get 20, we can only go for what is available and hope for the best.
I do hope this is intelligible !
Love Helen
Hi Ozzy
I had husky voice too, unlike Tom- some thought it was very attractive- I thought a change of career into vice was imminent but it all settled down when I stopped taking it, phew lucky escape there.!!;-)
Love Helen
Hello Jenny
There are many of us out here with light chain myeloma, I was diagnosed nearly 2 years ago and am now in full remission, I had RCD as induction chemo before SCT 17 months ago and am currently on maintenance therapy with Revlimid. I'm not sure how I can help as you seem a bit further along the road as far as treatment is concerned.
Love Helen
Dear Keith
Good start, let's hope you get a good run with it. Love Helen
Dear Wendy
This is a terrible blow for you, but don't cancel your holiday just yet, were you to be going with friends? I feel sure that your docs would let you go, unless you don't feel up to it of course.
Let us know how you get on on Friday,
Much love Helen
Hi Sharon
It is normal for all sorts of arthritic pain to disappear when you are on steroids, but I think you should mention the pain at the next appointment – if there is bone dammage, it is something they need to keep an eye on. And adequate pain control could be started.
Love Helen
Hi Lesley
On 3.2.11 I was told I had myeloma. It was the biggest surprise and shock ever. I was the fittest and most energetic of people, though a bit anaemic for no reason, blood transfusion service told me to go and get it checked out. I was reeling from the shock. I can't quite believe that I let them give me all this noxious stuff for such a long time, even now I find it hard to come to terms with the fact that it has all happened.
They said I didn't have to make my mind up immediately about treatment, I could have the weekend to think about it but treatment would start on Tuesday ( it was Thursday ) . I chose myeloma xi because there was a chance I'd get the new drug Revlimid – it is like thalidomide but a bit more potent. I didn't feel I had anything to lose either, after all I felt I had just been given the ultimate sentence. I did cry when I signed the consent forms, partly because I found it so sad to be making a decision like this, mourning the loss of my future as I'd planned it and the total change to my life, my family my friends. I don't think I've handled it very well, I'm so mad and angry still that its me!
Anyway, it started and yes it makes you ill, I think this is part of the whole problem, it is such a silent disease that you have no intimation that there is anything wrong and then you start treatment and THAT is what makes you feel grim.
So don't feel alone out there, talk to us about how it's going, you will always get an answer from someone who has already been there or who is travelling with you, which makes you feel less lonely too.
Love Helen
Hi Peter and Tom
Clearly this is now a competition! I was in for 3 days for the Melphalan and stem cells, then home for 2 days and back in for 10 a total of 13 days in hospital!
Hope you don't feel too bad Peter, just hang on in there.
Love Helen
Dear Lesley
I started the myeloma xi trial almost 2 years ago. Since then I have completed induction chemo, had stem cell transplant and now am on to my 15th cycle of Revlimid maintenance. I have been in complete remission since April 2011. I'm back at work full time, been on holiday to New Zealand and Italy, and am generally getting on with life, albeit a different life with a different perspective including many more irritating chest infections.
Which ever decision you make, good luck, you won't like any of it much – it is very hard to bear, but it is designed to give you as good a quality of life as for as long as possible, and you will get through it.
Love Helen
Hi Tina
Yes I do have side effects, I have a poor sense of taste and smell so some foods really do nothing for me now as they taste so different and I have to eat lots of fruit and veg or get a very gripey gut and constipation. I get quite tired too, and I don't always realise how tired until too late and then the next day is difficult.
They are not too bad to deal with but I do feel a bit of a wimp when I hear how others seem to be able to do so much more. Having said that, I'm still in complete remission so I feel it's worth persisting with.
Love Helen
Dear Wendy
I'm in deep admiration of your fitness regime, I gave up playing tennis about 10 years ago after rupturing a calf muscle and realising that it could easily happen again so only do walking now! My daughter has caught the bug for the great north run and has done it twice now but says she sees it as putting something back not a love affair with running! We watch and wait and see, I think it's a bit addictive.
I've not arranged holidays yet, I want to go to Peru but I need my cough to settle down for a few weeks before I contemplate the thin air, plan to go to France as well but not when yet.
Love Helen
Hi Tina
Welcome to the maintenance club! There are quite a few of us now. I've just started cycle 15 on the Revlimid and aspirin and still in complete remission. Hope all goes well for you.
Love Helen
Hi Ali and Vikki
This infection lark is a nuisance, I'm so grumpy just before the next one rears its ugly head, and sadly I never realise until its on top of me. I'm beginning to see a pattern here, when I do lots and lots of stuff, then rest a bit more – then I seem to pick things up. Had a lovely christmas then a cold, now conjunctivitis and a perforated ear drum, and the cough getting worse again too. All swabs negative 'its just a virus', so lots of early nights again for me. Hope the service went well Vikki, not an easy thing with all that you've been going through recently.
Andy it's good to know you are getting the priorities right and booking up all the holidays, just leave one or 2 for the rest of us eh 🙂 and yes a little trip out for coffee would be good, when the snow has let go it's grip. I was never sure at the beginning of my treatment what made my tastes change, I was on RCD for induction, but now I'm sure it's the Revlimid that caused the trouble, I can't taste or smell very much of anything now. Makes food rather boring!
Tom and Eva thank you very much………. And the occasional scrubbing up is quite fun! My daughter and I had a great time choosing the frocks, hubby not so keen on the pain in his wallet;-) but we're worth it…!
Love Helen
