[magicmomentsParticipant]

Well hubby started his myeloma XI trial in feb and after a bit of a rocky road (pulmonary embolism in april) he was 5 days off finishing his 6th cycle paraproteins described as too feint to quantify after cycle 5, all very excited at this…..

Then emergency admission to hosp with acute kidney failure which came out of the blue. was very traumatic due to initially being denied admission to ITU fortunately a very cross haematologist got that sorted and he was on ITU for 10 days and is recovering slowly. Apparently his free light chains went wild and at end of cycle 4 where 53 then end of cycle 5 where 800 when admitted to ITU 5,000!!!!!!!!!!

He has now been started on Velcade as he is now technically in relapse, which is bloody annoying as he was due stem cell prep end july and transplant in august.

anyone else similar experience,

anyone got from 5,000 free light chain level to under 100 with 4 cycles of velcade to enable them to go on for transplant or are we hoping for too much??????

feeling, frustrated overwhelmed and pissed off……..

[louishenryParticipant]

I was diagnosed 18 months ago, went on the Myeloma XI trial. 4 cycles of CTD worked well but on the 5th cycle paraproteins went up a bit and on the 6th cycle went up a lot, so after a few weeks off treatment I went on to Velcade (VCD) which worked much better. 6 months ago I had an auto SCT and am now in remission and virtually back to normal though I am on Revlimid maintenance which will hopefully extend the remission. So keep taking the pills and injections, trust the doctors, and hope for the best. Be patient, I got there in the end and I’m sure you will too.

[peterlParticipant]

Hello M Moments,

I can better that…  I was diagnosed with MM this time last year.  My LCs were over 11,000 (yes eleven thousand), and after a couple of cycles they dropped to 464 and then down to 6.2 and then 8.2.  This was on VTD treatment.  Unfortunately, they are on the rise again (117) but this is after my last treatment was in Feb 16.

Don’t know if this information helps??

Best wishes,

Peter

[peterlParticipant]

Sorry magicM, I should have added…  I personally wouldn’t stress too much regarding a quick sct, especially with the experiences that your husband has had. When I tried to make up my mind some months back whether to undergo an sct (I’m 67 and not been (prior to MM) in great health) , I asked the brilliant medical people on this site regarding the data for sct patients.

They told me the average relapse time for patients undertaking an sct is 18 months. This is average, with some getting to 2 1/2 years and longer, but some,unfortunately relapsing before the 18 month average time. So, in my case, and bearing in mind the time it takes some people to get over the sct, I decided not to have one. I think this decision was right for me, but it all depends…

if I were you, I’d take the advice of your consultants, get information regarding the risks and sct process, and take up this option when your husband is stronger and completely ready. And can I wish you, and your husband all the very best for the future.

Peter

[magicmomentsParticipant]

Hi

Sorry I have not replied to you till now it has been a very emotional time.

Following discharge from hospital hubby had blood tests at GP eGFR an amazing 89! Yippee. We all very pleased in the kidney function recovery. However the following week his kidney’s started to nose dive and 10 days after those blood results his EGFR was 16 just as he had started his 2nd cycle of Velcade. He eas admitted to hospital and transfered to a regional kidney unit thankfully. Kidneys continued in decline until last week he started dialysis as they failed completely. We have been told he has relapsed again and free light chains after their amazing reduction from 5000 down to 49! In the space of less than 3 weeks gone up to 3200…. therefore relapse number 2.

Haematologist has said his myeloma is obviously very aggressive and has commenced on Revlimid. Although we are hoping for a remission we know our chances are slim as he relapsed only 4 weeks after his 1st relapse.

Hubby is still in hospital but hoping for home soon only barrier is waiting regular dialysis slot locally oh and the spells of feeling very cold fir a couple of hours  then spiking a temperature!

Devastated is an understatement especially as this we believe is his last treatment option available at present.  🙁

[peterlParticipant]

Hello again MM,

I’ve just read your post regarding your husband. Drops of 89 down to 16 in just 10days seems one heck of a drop in kidney flow percentage in such a short time. And increases in LCs from 49 to 3200 in three weeks equally seem nasty. I know this may appear to be a daft question, but does your husband suffer from any underlying kidney problem (separate from the MM?).

Is his dialysis a possible temporary measure until he gets a bit better? And is there any drugs that can be given specifically to help the kidneys apart from those given to reduce the myeloma?

Regarding revlimid being the last treatment option. I would check this by asking one of the brilliant nurses on this website if there are further options.

Hope your husband improves, and quickly. Very best wishes,

peter

[magicmomentsParticipant]

 

 

• This reply was modified 8 years, 2 months ago by  magicmoments.

[compass007Participant]

I have been diagnosed about 12 months now and unfortunatley we are always fire fighting I started on velcade but it didnt work for me ….I thent went on and had CHOP chemo and the finally DT-PACE chemo that got me into remission..I then went on and had Stem Cell Transplant at Heartlands the remission lasted about 3 months which is pretty crap so they put me on a US drug not EU aproved called somthing like Ixazomib (but see my treatment forum comment) this seems to be holding up at the momment like I said we are allways fire fighting but there is hope as new drugs are becoming available quite quickly but it really is trial and error, its difficult not to get upset when something doesnt work but you have to stay strong and keep your chin up some people can live with this for 20 years if you get the right treatment and are lucky enough to stay healthy and in the right frame of mind….some people are not so lucky im afraid but thats part of the illness and comes with the terortary good luck and most importantly try and stay positive I know thats difficult….

[compass007Participant]

A clip from the Myeloma UK site….

Pharmaceutical company Takeda are also going to appeal the CHMP decision. During this period, Takeda will continue to make ixazomib available to eligible UK patients through a compassionate use programme (CUP).

This means that if a myeloma patient requires treatment with ixazomib, recommended by their doctor, the doctor can apply to receive the drug without charge. Please note that ixazomib is given in combination with lenalidomide and dexamethasone, so the doctor is also responsible for securing funding for lenalidomide and dexamethasone.

To be eligible for the CUP patients also have to satisfy the criteria of the Tourmaline-MM1 clinical trial, which means that they will have relapsed myeloma (i.e. between one to three prior lines of treatment) and not refractory (i.e. no longer responding) to protesome inhibitors (e.g. Velcade) or lenalidomide. The doctor must also be satisfied that the patient would not qualify for an existing clinical trial or be eligible to receive an alternative treatment.

If you have any questions about the CUP please speak to your doctor in the first instance or email askthenurse@myeloma.org.uk

[magicmomentsParticipant]

Very sad to report that hubby lost his short but courageous fight against Myeloma almost 3 weeks ago. His last blood tests showed free light chains at over 24,000 !

Hubby passed away very peacefully at home cared for by his loved ones. His funeral was a lovely personal celebration of his life.

Donations from the funeral will be made to myeloma UK shortly to help in finding a cure for this disease.

My heart is breaking with his loss but my spirit is not I won’t let this disease destroy my life too x

[taffdParticipant]

My condolences MM, to you and your family.

[peterlParticipant]

So sorry to hear about your husband.  Very sad.  And my condolences also.

Peter

[rebeccaRParticipant]

So sorry to hear your news but am heartened that you will continue the fight to not let this disease destroy any more than it has already. Life is precious – do your husband proud and live life to the full – for the both of you.

Rebecca x

[susieParticipant]

So very sorry to read of your husbands passing. My thoughts are with you at this very sad time. x

[peterlParticipant]

Dear Rebecca,

Regarding your last message…  I think your positive thinking, encouragement and support are absolutely first-rate; even amidst this sad story.  So thank you from all of us.

Peter

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