[docmikeParticipant]

Well things turned out differently.My next two results showed a plateau response due to thalidomide stopping working. So after four cycles I was given the option of coming off the trial and going on VCD for certain ,which was my wish .
So day 1 today Velcade/cycl/dex
So off thalidomide and heparin but still on steroids which cause most problems for me with lethargy and inertia days 2 and 3 after stopping them.
Next blood test is slightly critical to say the least.
MIKE

[cygnetParticipant]

Sorry to hear about this Mike – fingers (& everything!) crossed for your next blood test.

C x

[HarmonyParticipant]

Thinking of you Mike. Hope you are managing to have a touch of normality in between the torture of waiting for test results.x

[ali7Participant]

Thinking of you Mike.  My specialist is now not sure if its smouldering myeloma or lymphoplasmasitic lymphoma.  Para protein still at 23 but luckily no other symptoms

Hope all goes well

 

[kpParticipant]

Hi Mike, sorry to hear that Thalidomide stopped working and hope VCD working for you.  The steroids do cause so many problems.  Hoping next blood results are positive for you.
You have been an inspiration and your helpful, informative posts gave me, and I suspect many others, invaluable support at a time when I felt overwhelmed by the enormity of my diagnosis.

Up past my bedtime waiting for the time to take the second dose of Mesna as I am currently on the schedule for stem cell mobilisation.

Kind regards

Karen

 

[docmikeParticipant]

Thank you all.
I feel better off the thalidomide ( tremor better ,symptom which is only of interest to a gastroenterologist seems to be changing direction, .inertia gone )
but steroids now keep me awake and very hungry, hence the time of this email and more. I hope the stem collection goes well KP .
In retrospect I am now on the same treatment as you but it has been in sequence and with cyclophosphamide
I note that RCCD was reported to have given 41% serious adverse reactions in the first report on it from Myeloma X1 in EHA but that was considered the norm compared with reuslt with quadrupee regimes !
Dear Ali
I hope that definite answer is confirmed soon for you ;the classification of lymphomas is legendary to most non heamotologists ,so I don.t know how signficant the alternative diagnosis but hope all goes well.
Mike

[cartdawParticipant]

Hi Mike hope you are well.  I have just completed my 6th cycle of CDT that last cycle was rough and struggling with muscle cramps in my legs presumable from the Thalidomide.  No meds at the moment and I feel relatively normal but still have muscle cramps in my legs. My paraproteins are now 2 , light chains 900 but were 7000.  I think they would prefer them down a little bit more but the Consultant at Sheffield didn’t seem too concerned .  My stem cell harvest is booked for 24th August all being well.   Are you heading for the stem cell transplant yet.     Dawn xx

[docmikeParticipant]

Dear Dawn,
I am pleased you are doing well and hope all goes well in the future .Do you visit O2 day ward ? I visit mondays and thursdays for my velcade 2 weeks out of three (VCD off trial ) . CTD was stopped working halfway (at PR just ) after 4 cycles .I was offered to come off trial and get VCD for certain which I chose.
I am better off thalidomide ;no tremors and better on steroid withdrawal days (but now on less steroids but these help write late night emails off thalidomide!!!) I am just finishing second three week cycle but no results so far as response is much slower apparently. So asct may be november or later I guess.
I am impressed with the sheffield set up so that should reassure you.
Best wishes Mike

[docmikeParticipant]

After 2 injections of velcade M protein fell from 19 to 17 so hopefuly thing are going in the right direction again,slowly as anticopated with velcade ?
Mike

[HarmonyParticipant]

So pleased to hear this Mike. Any downward movement is a good thing.x

[docmikeParticipant]

After five cycles of vcd my M protein having dropped to lowest ever of 14 rose again to 16 .So I have to accept that I have partial response only after both thalidomide and bortezomib and am now proceeding to ASCT asap.
Mike

[kpParticipant]

Hi Mike, I am 39 days post stem cell transplant.  I am doing well I think from the feedback at transplant clinic but I guess the BMB after 100 days will tell more.

I just wanted to say sorry to hear that your protien rising but although SCT is challenging,  particularly on the GI tract,  it is very doable. I found the time in isolation was ok because you do need to rest and the nurses, doctors etc are in and out to monitor you so the days sort of drifted past. Just take a few things in you like to do to pass the time. Try to eat a little often even though appetite tends to dissappear.  I wish you well on this next step in your journey.

Stay strong

Karen

 

[cartdawParticipant]

Hi mike I have been at home now for 3 weeks after my SCT.  Feeling quite well now only occasional nausea . The energy levels are still low but improving.  On the whole the downside for me was the sickness and the mucositis which not everyone has but it doesn’t last . The staff at the HAllamshire were amazing.  Hope you are doing ok.  Good luck with the SCT.

[docmikeParticipant]

Thanks Karen and Dawn and I hope all is going well with you both .I go in for my ASCT next Monday 2/11
Mike

[kpParticipant]

Glad to hear you have a date for admission.  Good luck with the SCT. I did the sucking of ice cubes etc whilst Melphalan was administered. The nurse told me that you have to keep mucus membranes cold to reduce blood flow not just during administration but for 6 hours afterwards.

Best wishes Karen

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