[susieParticipant]

Hi All.

Well it looks like after only 6 months of remission, I am beginning to relapse. My PP’s are slowly rising. Was 2 at end of treatment and is now 10. Not high I know considering at start of treatment I was 63. I wish now I had said yes to maintenance. I was given the pro’s and con’s of it but I wasn’t actually advised what would be best to do for me.

The next treatment will be Velcade. How I’ll cope with that time will tell. I’ve been on the Myeloma XI trial and lenalidamide was bad enough. Does anyone know if I can now go on another trial ?

Somehow relapsing seems worse than when I was first told I had Myeloma. It seems to make the whole thing more real, that this is it for the rest of my life.

Sorry for the rant. I suppose I’m feeling sorry for myself. It’ll pass.

Best wishes to all

susie

[HelenParticipant]

Dear Susie
You are allowed to feel like this, it’s so overwhelming, just when you think it’s all going ok , you get clobbered again and have to start from square one, it’s a bit like snakes and ladders and it is hideous. I couldn’t believe I was relapsing after my SCT so didn’t ask for the numbers for 2 months – until I was told I had to be treated again- if it is any consolation, I was on maintenance lenalidomide after SCT and got 12 months before my numbers started to rise – then I had 5 months before they got high enough for treatment, during which time I came to terms with it all over again.
I had velcade, it worked well really. But I started to relapse again about 4 months after it finished, I’ve had high dose steroids but continued to relapse and am now on pomalidomide which has slowed it down and I’m plateauing at the minute.
I don’t know of any trials at the minute but the mmuk site has a comprehensive list of all the trials going on just now, or ring them up and ask.
My advice would be to try and trust your team, if you don’t, get another opinion, and most of all …. You rant and rave girl… It’s so unfair, but you will get over this hump and move on, it may be that the numbers settle a bit and you can hold off treatment for a while , grab a holiday if you can, and most of all ..be gentle with yourself just now, it is a horrible shock, you have been through so much all ready. How can it be that just as you were getting used to it it comes back and to quote Eve of old’ it comes up and bites you on the bum again’
Much love … It’s an awful time for you
Helen

[susieParticipant]

Hello Helen

Thank you so much for your reply. I find it a real comfort to “talk” to people who know what its like. I do go to a support group but we’re on summer break at the moment until the end of Sept. I do know I will get over how I feel at the moment. You have to don’t you.
May I ask how high your PP’s went before they started you back on treatment ? And how you found the Velcade compared to the lenalidomide ? ( I know everyone reacts differently)

Once again my thanks

susie

[kpParticipant]

Hi Susie,

I have just come out of hospital after a stem cell transplant. was a tough month but doable and now I have a couple of months recovery to get through. can’t believe how tired I am.

I am sorry to hear that your PP’s are slowly rising after 6 months remission. I agree with the previous poster, rant and rave as much as you need to and I wish you well with whatever treatment plan you agree with the Haematology team looking after you. One of the hardest things to get my head around is that I will be fighting this MM for the rest of my life but there is some consolation knowing it is a marathon and not a sprint.

Take care of yourself

Karen

[susieParticipant]

Hi Karen

Thanks so much. I have clinic appt next week so will find out what my PP’s are doing.

Unfortunately I’m not entirely happy with my consultant etc so I may ask for referral to another hospital. They have failed to give me advise over things and inform me of some changes on the trial I’m on.

I do wish you a speedy recovery from your SCT, and that it gives you a very very long remission.

Best Wishes

susie

[HelenParticipant]

Hi Susie
Sorry this is so tardy, I don’t have any pps. My pp at diagnosis was 2.9 and light chains 800. But bone marrow around 60% myeloma with some lymphoma characteristics … Such is the individuality of the disease. Since then when I relapsed treatment started again when my light chains got to 30% of the diagnosis number and bone marrow at 20%… But the pp never has returned! Next time treatment started at 30% and this time it shot to 50% then up to over 900 when I started on pomalidomide urgently. It is now down to 150, and has been around this number since March…. Which is quite gratifying, I just hope it keeps working! Every clinic visit is a bit of a drama, I get quite worked up about the whole thing! I think that is normal though, it’s such a worry.
Velcade…well it was ok, tiring and the fatigue is unpredictable, I had peripheral neuropathy a bit which mostly resolved on the rescue week, though I had it a bit before I started it. I found it more annoying to have to go to the hospital as it was a 3 hour visit for a blood test and an injection which took around 6 minutes of treatment time!
One of our other myeloma ladies has just started velcade and she’s feeling really much better on it than before, so she was ready to take it, I think they waited until her pps were up to 20 (her diagnosis number had been 76)
I thought Revlimid, like Pomalidomide, was easier to take and fit normality around but I was and am a bit more fatigued and I have no stamina, but it is working so I will continue until it doesn’t!
Hope your numbers have dropped again and it’s just a blip but if not do keep in touch and I hope you find a consultant you can work with, it is such a worry, and that’s not very good for you!
Love Helen

[susieParticipant]

Hello Helen

Gosh you have been through it. I know what you mean about getting really uptight before clinic/treatment appointments. It almost makes me ill, yet the clinicians etc never appear to appreciate how we feel do they. I’ve also got quite uptight since it was announced by the CDF that they are dropping 2 of our drugs.

My PP’s were 14 on my appointment last week so they don’t seem as though its going to plateau. I was monitored for MGUS for about 3 years when my PP’s averaged 30, and my consultant said its possible the PP’s will plateau at that figure. He also said he wouldn’t look to treating until I got to 40, (diagnosis number was 63) unless I had symptoms. Personally I think 40 is rather high to wait but then I am not the doctor. He said my next treatment will be Velcade once a week. I certainly don’t look forward to that. As you say a 3 hr visit for a 5 minute injection

Take Care

Love and best wishes

susie

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