[jillsParticipant]

Hi All,

I just wanted to give an update on my Mum’s treatment in case it is of interest. She is 85 and was diagnosed in 2007 (PP 39, LC 10,000) followed by CTD for 10 months after which she had a plateau, she then relapsed and had Velcade for four months, then another fairly quick relapse took her onto Revlimid which didn’t seem to work much for her. At the end of all this her PPs were around 25 and LC 5,000 (LC have never got below 1,000). During all this time her kidney function remained normal, she had some blood transfusions but overall has coped very well. She had a break from any treatment from August last year until April when PP was 48 and LC 18,000 (!!) so she restarted CTD at quite a low dose. Now I was surprised at this as I didn’t know you could revisit a previous treatment but guess what, it is working and at her clinic appointment yesterday PPs after two cycles are 44 and LC down to 14,000. All other bloods are normal and she feels and looks quite well. She is to have two more cycles with a small increase in the thalidomide.
I thought this might be encouraging to others particularly older patients.
All the best to everyone,

Jillx

• This topic was modified 9 years, 10 months ago by  jills.

[rebeccaRParticipant]

Thanks Jill, This is so amazing that she has managed with such high light chains – my kidneys got killed on just 1120! I think it highlights to us all that we all have a unique and individual disease and we must remember this when reading literature. Everyone is so different – and sometimes in a good way. If I were the consultants I’d be researching your mum to try and ascertain how she’s managed to cope with such numbers without damage – and then bottle it for the rest of us! It’s always nice to get periodic updates as you remember the original stories but then never hear from many again and wonder what happened. Best wishes

Rebecca

[VickiParticipant]

Thanks for this encouraging story gill. Very much hope that your mum is feeling well and continues to improve

Vicki and Colin x

[mhnevillParticipant]

Hi Gill

Thanks for this. It is good to have confirmation of something I vaguely remembered, that you could revisit CDT. Certainly if/when I relapse, I will ask about it. Not without its problems, horrible taste, thinning hair and shingles, but six lots brought me into complete remission the first time.

I do hope your Mum does well on it. I think you can ask for a lower dose of a Thalidomide if nueropothy becomes a problem.

Do let us know how your Mum gets on.

Love to you both.

Mavis

[jillsParticipant]

Thanks everyone. Mavis – Mum started on 50mg per day of thalidomide and for this cycle it is increasing to 100mg per day. Her doctor said he could reduce this again if she starts having problems with neuropathy – she did have a bit of this before when on thalidomide. However, I think 100mg is still a fairly low dose.
Will let you all know how she gets on.
Love,
Jill

[juliehParticipant]

Hi Jill

Thanks for the update and I am really pleased to hear your Mum is doing well on CDT again.

We have had a very challenging few weeks with my Mum (aged 77 now and going into her 7th year with the disease). The Velcade was not working and giving her nasty side-effects. She’s in hospital again at the moment and they have very recently put her on Pomalidamide and dexamethasone. I was very surprised about this due to the new-ness of he drug and the fact that it’s not generally available yet, but apparently the Cancer Drugs Fund is paying (good old NHS!).  She had quite bad side effects with both Thalidomide and Revlimid, but I guess they are running out of options.  This disease is a marathon and not a sprint that’s for sure. We plod on and hope for the best.

Regards, Julie.

 

[jillsParticipant]

Hi Julie,

Sorry to hear that your Mum is struggling, I hope the new regime suits her better. My Mum had Velcade last year for 4 months subcutaneously too but although it reduced the MM levels during the treatment it very quickly returned afterwards. The weekly trips to the hospital were also very difficult for us. She seems to be doing very well on the CTDa treatment at the moment without too much in the way of side effects but she is obviously quite tough to be able to cope with it all.
Let us know how your Mum gets on and all the best to you both,
Love,
Jill

[juliehParticipant]

Dear Jill and all,

So sorry to bring bad news to the forum but I wanted to let you all know that my 77 year old Mum passed away last week, after a brave 6.5 year battle with myeloma.  I think, for her it was too late for the pomolidamide as she was deteriorating fast. I cannot say enough praise about the care my Mum received on the NHS, both in regard to treatment and nursing care; I don’t think she could have had any better treatment elsewhere (she lived in N E Lincs). The end was very peaceful.

Jill I hope your Mum continues to do well with her treatment. I would also like to pass my best wishes to everyone else on the forum who are either experiencing the disease, or supporting or caring for someone with myeloma.  I will continue to support Myeloma UK and follow new research on the disease with great interest.

Best wishes, Julie.

 

[jillsParticipant]

Julie,

I am very sorry to hear about your Mum but glad it was peaceful and her battle is over. I am sure you will remember her in healthier times.

My Mum has also had excellent care from the NHS and despite her advanced age access to all the drugs with no arguments. She is continuing to do well, thank you for your best wishes.

All the best to you and your family,

Jill x

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