Hi Terry,
Great to hear your shoulder pain was just normal 'life's twinges'and you are still in the watch and wait group. I want to stay in the watch and wait group for as long as possible too if I can. I don't know why it is taking so long to see the specialist, even my general heomo doctor is surprised he said it usually takes 2-3 weeks, so he is also chasing it up this week for me. Maybe it has just been lost or delayed in transit for some reason. However, the positive to come out of this delay is that I now have 3 consecutive blood test results showing my heomo level going up. So very strong evidence that my red blood cells are not being so outnumbered as the doctor thought a few weeks ago ! They are holding their own at the moment so I am trying to get on with the usual things in my life while I can. I will keep you posted and thanks for being there, it's lovely to know someone can empathise with my situation, it really means a lot.
Fadia
Hi Terry,
Can't believe St Patrick's Day is eons away now I think I have been living in the twilight zone since then such a lot of really confusing stuff has happened to me. However,I'm sure you have had all of this yourself over the past months. As you know I took your suggestion and organised a second opinion from a specialist in myeloma and that was about 3-4 weeks ago but the appointment still hasn't been communicated to me yet, so I am still waiting for a date, probably will find out this coming week. The most amazing thing – or maybe it's not- but it seems and feels amazing to me- and that is during the waiting time to see the specialist, my general hemo doctor has taken blood samples every week and for the past 3 consecutive tests my red blood count has bounced (his words) back up to over 12, so I am miraculously no longer aneamic. Since that was the only criteria which he based his chemo decision on he has now decided that I don't need another blood test for 6 weeks, until which time I am freeeeeeeeeeeeeeee ! Yikes, it seems to have been all hospital appointments and research for about a month and now I'm told I can skip it all for 6 weeks ! So feeling elated but also confused. Thanks for your suggestion of Margaret's Corner and her ideas about turmeric (curcumin)I raced down to the health food shop and have been taking it every day since Mar 18th. Hope all's well with you. Fadia
Hi Terry,
Saw my general/heom doctor yesterday and he has agreed to arrange for me to have a second opinion with a myeloma expert at another hospital so I am very pleased to be having someone else take a look at my results.I was thinking about the 'watch and wait' monitoring system you are on in the US and was wondering if you have been given any suggestions about things which may help keep you stable – such as eating/or not eating certain foods or drinks, taking exercise etc ? I have heard an alkeline diet is preferable to an acidic one.
Best Wishes
Fadia
Hi Terry,
Good idea about writing it all down because although I feel pretty lucid at the moment I can see how I might get flustered in the meeting, especially if he starts to bulldoze me into accepting everything he says at face value. I've decided if I am not happy with the meeting I will either ask for a second opinion from a specialist in myeloma and if they refuse, I will pay for a private medical report from one. Once I am absolutely sure that CDT is the best way forward then I will be at peace with myself about taking that route.
I will keep you all posted.
Loads of thanks
Fadia
Hi Terry,
Thanks for your help. Yes, I have requested another appointment with my hematologist at the hospital. When I first heard the news I couldn't think of any questions to ask him because I was too much in shock. However, now I have had almost 2 weeks to seek more info about this illness, from good people such as yourself, I now feel in a much stronger position to have another appointment and run the CRAB criteria past him. He may well be right and I might need to start Chemo now but later on down the line I know I will feel much more at peace with myself if I knew I had done everything I could at this early stage to get the right treatment at the right time.
Many Thanks
Fadia
Hi Terry,
Thanks for your leads. I was due to start chemo today but rang and cancelled ! Last week I spent the whole time in a 'daze' feeling like I had just been hit by a bag of hammers but now I am starting to realise it is 'my body' so it should also be my choice. It is so easy to just be so scared that you can just do whatever the doctor says. One great thing I did do was I met up with someone local who has had myeloma for 4 years and has been through the treatment and she also said she felt bulldozed into having her treatment within days of a diagnosis and although she did need to have it (because she had very severe presenting symptoms by the time she got to the doctors) however she did feel she should have had more choice as to which treatments to have. She was started on thalidomide and it affected her tinnitus so badly that she had to be taken off it within weeks and given something else. I do not like the idea of thalidomide because of the risk of blood clots but nothing else was suggested to me.
I shall be reading all of your links this weekend and thanks again.
Fadia
Hi Mavis
Thanks for your post. I was due at the hospital today at 1pm to start chemo but rang and told them I needed more time to think over my options. Yes, in time, I may well have to go through the treatment they are offering but I think they are rushing it a bit in my case. If I wasn't been monitored it would have taken me at least 6 months to get along to the doctors with any presenting symptoms so I think a couple of months for me to do more research is not risking it too much. I know the only symptom so far is anemia (10.9). I will be looking at your posting 'starting CDT' later on this evening, thanks for that.
Fadia
Hi Terry,
Thanks for the info – I have never heard of the CRAB criteria but I have been told that the only presenting symptoms are my hemoglobin level which is 10.9 and my protein level is 39. My creatinine level is 52, calcium serum is 2.23.I have had no infections at all or bone lesions.
On Monday I am going to see a homeopathy doctor to see if they have any suggestions of how I might bring down the protein levels in my blood – it seems strange to me that I have been able to function very well since this was diagnosed in 2007 and then something has happened to make the protein start to gradually rise. Unlike you, when I was diagnosed my doctor told me it very seldom progressed so there was no point in me thinking about it unless and until it did start to progress, I can now see I should have been doing my own research on it because I've now found myself in a position where my doctor has given me a week to get my head around the idea of chemo. Since I have obviously been smouldering for almost 5 years I feel I could have prepared myself much better than I have.
Fadia
Fadia,
Oh, just read everyone's posts and I should have said a Big Hello to you all. I'm Fadia and I am due to start what sounds like awful treatment next week (might just run off to the hills instead, don't know yet )has everyone had the CTD treatment of cyclophosphamide, thalidomide and dexamethasone ?
Fadia
Hi Terry,
Just read your post and I was very interested to hear that you have only mild anemia so treatment has not been triggered yet. I was diagnosed accidentally too, I was found to have MGUS in 2007 and was checked every 6 months until last week when I was told I had become mildly aneamic so they would start me on Chemo next week. I am still reeling from the shock and don't feel unwell at all and have been told I have no other symptoms at all so I am thinking maybe I could wait a while longer to see if my aneamia stabilises. I don't want to have to go through this treatment unless and until it is absolutely necessary. What anemia rate do you have at the moment ?
Fadia
