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Hi all.
Ive just commenced my second three week cycle of ctd.So far I only know my hb has risen from 110/11.1 to 122/12.2 after two weeks of tx which I regard as a good sign.
Great news Dawn your heading for an excellent response to tx
Yvonne , I am pleased bloods are stable.But note some heamotologists regard recurrent serious infections( eg pneumonia ) as an indication for treatment.
I am still working on my reflections thread .
best wishes Mike
ps smouldering myeloma =asymptomatic myeloma
I think my husband had MGUS for at least 9 years. I noticed one day that he had lost height, he was at the time on painkillers for Spondylitis, also he used to get one cold after another. He never had blood tests done so I will never know. He started having trouble with his bladder 9 years later and was intermittently getting chest pains when walking uphill, he was 59 years of age by this time. He had heart tests and all was well!! Also he was started on treatment for irritable bladder and this seemed to work. Another few months passed and he was playing golf when he hurt his back. He paid numerous visits to see his GP who decided it was a muscle strain and just kept giving him more painkillers. After approx. 3 mths my husband could stand the pain no longer and we went to A & E and he was admitted. The rest is history, MM was diagnosed. Dave managed to fight this disease for over 5 years but he died last September. In many ways if Dave did have MGUS I’m glad he didn’t know because it would have been watch and wait for 9 years. I’ll never know but looking back all the signs of MGUS were there from reading a lot of the posts on this site.
Sue
Hi Sue
So sorry for you on loss of your husband. From the symptoms you’ve described he may well have had Mgus. I think all Myelomastarts with an Mgus but everyone with Mgus doesn’t always get Myeloma. That’s how my Haematologist described it to me. Its a 2-edged sword knowing I have Mgus. Its too in that I am being monitored regularly with blood tests every 3 months and if anything changes treatment can be started but on the other hand there is that dread every 3 months when I go to hospital for my results. Its never going to go away. I can see where you’re coming from re your husband not knowing until he had diagnosis of Myeloma. My Mgus was just discovered by my gp when I went to see him because of aching arms& legs and pins and needles in hands & feet. I am grateful that I am being monitored and all I can hope is that it doesn’t progress to MM.
Sending love and hugs
Take care
Yvonne xx
Hi Yvonne
I do think you stand a far better chance of a better response to treatment if you are being monitored. I say this because a friend of Dave’s was diagnosed with MGUS by a routine blood test and
when the Myeloma became active he lived for over 10 years with the treatment. I just look at it that
we had 9 years worry free but maybe if Dave had known he may still be here with me today, I miss him so much. I know exactly what you mean about the dreaded visits to the hospital, we used to dread them in case the drugs had stopped working too, it was such a relief to be told everything was fine but, when the news was bad we came home with heavy hearts wondering where next. I hope your MGUS never ever develops into Myeloma.
Love and hugs to you too.
Sue xx
Dear Sue,
I really feel for you. It is so sad to lose your soul mate like that. I am really grateful to the NHS for the care and monitoring it is giving me. I had never heard of Myeloma and I have worked in a gp surgery for almost 17 years. My gp had to tell me what it was when he rang me re my abnormal blood results. The doctors I work for said having Mgus was a good outcome purely because I will be monitored for life regardless. Its just the mental and emotional stress that goes with it. It can be quite isolating in some ways. I appreciate your comments and support and wish I could help you. Please please stay in touch if ever you need to talk . Your grief is still raw. Bless you for helping me.
Sending love
Yvonne xx
Hi Yvonne
Dave was my soul mate for over 30 years, I’m lost without him. I’ve been reading this site since he was diagnosed in 2009, always hoping to find a cure. We had never heard of Myeloma either, it came as a great shock. Dave’s GP should have arranged an X-Ray with the back pain going on for 3 months and since this did not happen for him they have changed their rules and if anyone presents with back pain for 6 weeks they are now automatically sent for one. When Dave was diagnosed he already had 2 collapsed vertebrae, then 2 more collapsed shortly after and in the end it was 6. Maybe this wouldn’t have happened either if we had known beforehand he had MGUS, there’s so many different ways of looking at this disease.
I’m glad they’re monitoring you and looking after you, in my opinion if MM does kick off the sooner it is caught the greater your chances of a good long remission. Dave started with CTD, then Velcade & Dex, then Revlimid and lastly was on a trial for Pomalidamide at St James’ Hosp in Leeds, the last drug destroyed him but he persevered despite the terrible side effects and it did give him another 11 months.
You’re the first person I’ve chatted to on this site and it’s been a pleasure and I’d love to keep in touch with you and see how you’re getting on.
Love Sue xx
A picture of us taken about 3 years ago. I hope I’ve put the picture on ok, can’t tell until I post it.
Hi Sue,
What a lovely picture. It must be so difficult for you and my heart goes out to you. You must miss him so much. It sounds like he really put up a fight against MM. I hope you have had good support from family & friends. The Myeloma nurse told me this was the best UK site to go to for info and support. I just joined the Forum earlier this year. Sometimes I just didn’t know where to turn. So many questions and queries. MM is not something that people generally can discuss with me ….for instance my colleagues at work obviously know my situation but know absolutely nothing about this type of cancer in comparison to other cancers such as breast, bowel for which there is more publicity. I try to just get on with things but sometimes my mind gets caught up with “what ifs”.
A day at a time Sue….that’s all either of us can do.
Love
Yvonne xx
Hi Yvonne
Thank you and yes I miss him every day. He put up a very brave fight and he responded to every drug but not well enough to stay in remission for more than a couple of months. The best he got was 17 months after his SCT but quite a lot of that time was spent recovering from it. I know exactly how you feel, I saw it with Dave and I was no different, all you want is to be ok and just enjoy life like it used to be. I had no family support as we didn’t have children and all our close relatives had died so it was pretty much me and Dave fighting it together. I’ve had lots of support from my friends since Dave died, but all I want is for him to come back, how stupid is that.
If I’m right about Dave having MGUS for so many years you could be the same and it may never happen, try to enjoy every day that you can. I hope you have lots of support. I know what you mean about work, people would ask me about Dave but when I tried to explain it was obvious they had no idea at all.
My email address is susanconstantine@talktalk.net.
Take care
Love Sue xx
Seems like your having a positive response Mike – keep strong, one day at a time.(Apologies for the clichés) but I wish you well.
A beautiful picture – I hope you find some comfort in good memories of happy times. Sometimes I think that the people that we lose stay alive when we have vivid dreams about happier times. At least, I hope that this will be the case for my children if my myeloma progresses. May we all smoulder forever!
Good news;my paraprotein has gone down from 44 to 19 after four weeks of ctd.
Muscle tremors ,tetany on some days due to low calcium /zometa only side effects so far .
Mike
Great news Mike! I’m so pleased to hear.
That’s good news mike. I’m hopefully going to have the SCT early sept at sheffield if all goes to plan. Para proteins now 4 after 4 cycles but not taking anything for granted hope they stay down. Hating the days when I’m on the dex. But otherwise coping reasonably ok. Have already been in hospital with a chest infection. Good luck with your journey. Sounds like you are doing well. Dawn
Hi Dawn,
You seem to be heading for a complete response but sorry about the chest infection.
I will find out on thursday my results from three weeks ago which was near the end of second cyle but only a week after last result of 19 so hoping for lower double figutre or less.Like you if thats the case, I will to try to gat a provisional date for Sct ,possibly September in Sheffield where I am being treated . So we might be in the isolation unit together !!!!I have every confidence in the unit there. It now has an international reputation as one of two centres (other chicago) which has done a pilot trial of SCT in severe relapsing multiple sclerosis .
I not sure if they will insist on specific number of cycles(in the absence of increasing side effects) and how long the cyclophosphamide , stem harvest cell takes assuming it goes to plan ,so October may be the outcome, again subject to availablity of slots in the unit ????
My worse days appear to be on the two three days coming off the steroids . Inertia and my tremor gets worse and seem to pass more urine .I also have had tetany in my thumbs but I think that is due to Zometa causing hyypcalceamia +low albumin and haemodilution effects , so having to take calcium tablets .But no sign of peripheral neurpathy so far .On steroid today hence I am up late
write this message !!
Best wishes Mike
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