[christinepughParticipant]

Hi All

We had the news on Tuesday that Chris's sct in March has failed. He had an early bmb at day 50 as our consultant suspected a problem when his counts were not recovering as they should should and the result is he has 60% myeloma in his bone marrow.

Prior to sct he had revlamid, velcade and Dt pace all of which worked very well for the first couple of cycles but then stopped working. Pp's before sct were 23.

We are devastated by this news our consultant said he is going to refer us to another specialist that maybe has a clinical trial. His counts are not good enough for more chemo at the moment and anything involving velcade or thalidomide could aggravate his neuropathy .

If anyone has any ideas from the hospital you are with please let us know as we are despereate to find some hope. Chris is currently at The Christie Hospital in Manchester.
He has no bone or kidney problems just slight anaemia and is fit apart from neuropathy which doesn't stop him keeping fit.

Our son is in the middle of his Gcse's and our daughter is 13 tomorrow we are really positive people but Chris has had one brick wall after another with this disease.

Christine X

[eveParticipant]

Hi Christine

My names eve and my husband is very much the same, I know how you are both feeling we are waiting on second BMB,first showed. 10 percent .Slim had his SCT in May he only got 6 months after 100 days,he had trouble getting his platelets up did not connect the two things.

Chris should be eligible for Muk 5 trials had right chemo 1 relapse ring Ellen she should be able to tell you plus give you info.
Think positive he,s young,so possible another SCT, in future , I know it's not what you want to hear,but Chris is the patient he needs you to be strong,ring Ellen today even if its just to get it out of your system.

Be positive, I know how you feel. Eve

[EvaParticipant]

Dear Christine,
I'm so sorry about the disappointing results.
Is it time to research a mini-allo transplant? Full allos have a higher mortality rate. I think that some doctors are not keen and a patient might need to ask lots of questions. I expect they prefer to do a mini-allo on younger and stronger patients. The data from studies can sound disappointing,
but there is a sub-group who get remissions. It must take a while to search for the best possible match.
I appeared to get worse after my auto transplant, but there was a late effect that kicked in after about three or four months.
Eve, I'm also wishing you and Slim well and thinking of you.
Eva

[PerkymiteParticipant]

Just popped on to wish you and Chris the best of luck. Sorry, I have no experience of your situation. Please keep us posted.

Kindest regards – vasbyte

David

[meganjaneParticipant]

Hi Christine,

I am so sorry about the BMB results. I can't help with your question but I just wanted you to know I am thinking of you and Chris and hoping Chris finds a treatment plan that will not make the neuropathy worse.

Megan

[christinepughParticipant]

Hi Eva

Thanks for that but we have been down that route Chris was scheduled to have a full allo in January 2013 he had a perfect match unrelated donor, but our consultant stopped it 3 days before he was due to go in as the myeloma wasnt stable enough and therefore the risk too great.
The mini allo has been ruled out this week as the the % of myeloma at 60% is again too high a risk. Thing is he hasn't had a bone marrow biopsy for over 12 months so we have nothing to compare it to. We asked if there was a chance that it would continue to drop as it was only day 50, but the consultant wasn't hopeful.
Christine

[christinepughParticipant]

Hi Eve

Thanks very much for that I'll contact Ellen to find out more about Muk5, I wonder why our consultant hasn't mentioned it ?
He only managed to harvest enough cells for 1 transplant so no chance of another.

Thanks again

Christine

[eveParticipant]

Hi Christine

SCT are being done,if he can get his Myeloma down again,and they can produce enough stem cells it has been done.

Look at some of Marie's post from Kent,her husband had another SCT !!!!

I know the figues seem awful,Slim had 80 percent in BMB after 6 cycles of CDT,Velcade took it down to 0,knowledge will see you through this,learn all you can,ask Ellen questions.

At the moment you feel,dreadful,sometimes doctors fail in explaining things to patients,plus you hear prominent words,so do not take on board the rest of the conversation,

Deep breaths,positive thinking,list of questions,be pro active, Love Eve

[christinepughParticipant]

Hi Eve

I appreciate you taking the time to reply Eve,thanks so much for the advice.
We feel like we did when Chris got diagnosed that horrible gut wrenching feeling, only worse because we had so much hope back then. I can't beleive that after melphelan the myeloma has not moved. What else is going to work if the strongest drug available didn't do it ??
Velcade worked really well for Chris then the dreaded neuropathy kicked in.
I thought you had to have enough cells harvested for two sct's prior to the first one ?

I too am "Slim" Chris's nickname for me, can't really remember why !

Once I've got over the shock I'll get going, we are not giving up, no way.

Christine

Christine

[eveParticipant]

Hi Christine

You say his bloods are ok except he is anaemic ,how are neuts and platelets surely they are low.This is what you would expect??? The reason I am asking,is Slims blood results have always been good, so they have not been able to use these as a true marker for his condition. This is why he has had lots of BMB.
You say he has not had a BMB for awhile,did he not have one after CDR and Velcade to confirm Chris,s Myeloma was reduced enough for SCT.???
You do not say what strain Chris has,for example Slim,s is IgG Bence jones kappa light chains, it helps to know,to research it.
As you say Chris is young healthy with no bone damage,this is all in his favour.

Concerning your sons exams I would let the school know just in case it has any effect on him.

Last Slim has had the nickname since joining marines,he use to be 6ft1in and weigh exactly 10 1/2 st,lost 5inches in height,at worst weighed just over 9 st. Now 5. 9 height creeping up to 11st.,this roller coaster has a lot t answer for.Eve

[christinepughParticipant]

Hi Eve

His neuts are good 3.8, they have been good since he came out of hospital. Platelets 35 still low but slowly climbing. HG 7.8 so low.

No he didn't have a bmb prior to transplant which we didn't realise at the time but now realise that most people do ?? They just went from his pp's and other blood results. Chris is IGG type.

School have been great, I told them a while ago about Chris.

Take care

Christine

[FOXLEYParticipant]

Hi Christine,
I am so sorry to hear about your troubles. I had an SCT at The Christie under Dr Cavet last November. As far as I know Dr Cavet is one of the top consultants for MM so I imagine that he will point you in the best possible direction. I found communication about what to expect from melphalan less than perfect. My PP went up slightly after transplant and the consultant said that it only went to zero (as I had been hoping) in about 15% of patients. Stabilising the disease seems to be what is hoped for in the majority of patients.
I do hope you have better news soon.
Chris

[sanParticipant]

Dear Christine and Chris, you are so right never give up!!, there will be something out there to help i am sure, keep pushing and i so hope that you find the best way forward soon, wish that i knew more in order to help out, love San

[mhnevillParticipant]

Hi Christine and Chris

Also wanted to welcome you AND say so sorry Chris's treatments haven't worked.

SCT aren't the only way to go. Several of us on the Site are managing without and still keeping going! I see Chris was on Velcade and got núeropophy. I haven't had it, but have read that having it by injection makes one less prone to it. Did Chris have it this way? Just a thought.

Hang in there both of you as it sounds, from what you say, that Chris's body is standing up reasonably well in spite of the dreaded MM.

Best wishes to all the family. I do hope your son does well in his exams in spite of the additional pressure.

Love Mavis x

[tomParticipant]

Hi Christine and Chris

Am sorry to hear that Chris is having it rough. but as has been said the SCT is not the best its said that MM can be controlled with drugs alone its jut finding which ones will work on Chris.

Stay strong you two

Tom Onwards and Upwards xx

[Author]

Posts