[ChelleMcParticipant]

Hi all,

Just needed some words of wisdom. My husband is 37 (diagnosed at 30). This year has been so tough and he has been quite ill. MM has kicked his ass this year to be honest. The Velcaid didn't work and he was too ill to get onto a trial so the Consultant had to go to his last resort of Revlimid. He is on his 4th or 5th cycle. The 1st lot brought down his levels by half which was fantastic. The following lots kept them edging down.. GREAT!! We went in today and his blood levels that should be up are down and the ones that should be down are up.. His paraprotein has gone up 20points… I feel like we hit a brick wall. I am so scared of loosing my husband. Has anyone else had this happen? Could it be a blip in his bloods? He also has an x-ray today for a tumor on his collar bone. I just wish this nightmare would end. I just want him happy & "healthy" again.
Any thoughts??

Thanks,
Chelle xx

[MinParticipant]

Hi Chelle
I know exactly how you are feeling. My husband had had a stem cell transplant that failed then velcade then Revlamid.
We were devastated. But dont give up just yet.
What they did to start with was to put him back on Thalidomade which was a drug that he had responded to very well before.
Next they gave him a big dose of melphalan and once he had recovered from that they gave him a further dose and his stem cells from storage.
He has undergone this proceedure and is pretty poorly but no more so than most people with mm and a transplant go thru,
Im sure your husbands team will be having a meeting and discussing the way forward Bendamustine trial for instance. Pomalidomide and some of the old favourates from way back when that used to work before the novel drugs that there are now.
Try and keep calm and ask what the plan is of his consultant, more information means less fear.
I wish you both all the best and hope for a healthy outcome
Min

[PerkymiteParticipant]

Sorry Chelle I can offer nothing but support.

I am 8/9 months post SCT and go for my next appointment at the end of September. Although I feel great and am managing to live a relatively normal life I will go to my appointment with some trepidation, so I have a small idea of how you are feeling right now.

I wish you and Hubby the very best of luck, as Min says do not give up seek and demand the answers to your questions from the Consultant.

Kindest regards ? Vasbyte (South African word meaning Bite Hard ? think about it and you will know what I mean 😉 )

David

[GillParticipant]

Figers crossed for you and your husband that it is indeed a blip xx

[mhnevillParticipant]

Hi Chelle

So sorry you and your husband are having such a hard time. As everyone says, don't give up, these Consultants seem to be able to come up with a plan. If yours doesn't ask for a second opinion.

All very best wishes.

Mavis

[shirleyParticipant]

Hi Chelle sorry to hear your husband is poorly and so young too,i was 43 when i got diagnosed with MM,that was 2yrs ago now. I've not experienced what your husband is growing through,so i hope for both your sakes that this is just a small wee blip,and that he starts to feel better again,keep us all posted with his progress,and don't give up,best wishes Shirls x x

[tomParticipant]

Hi Chelle

Like the others I am sorry to hear your Hubby is poorly 🙁

Please think on the positive side it will make your journey a little bit easier, its a struggle at times I know but it will help.

I cant offer advice re the meds just to give you both my support.

Love and Hugs ((()))

Tom "Onwards and Upwards" xxxx

[paulineParticipant]

Hi Chelle

Hopefully it is just a blip. I know my hubby's bloods are rarely what we expect them. There was one occasion when he was told he needed a platelet and blood transfusion only to be told a few hours later that he didn't!

Often consultants only tell you how much they think you need to hear so my advice would be to ask what options they are considering. There are times when you think there is no hope but the consultants then tell you what they are planning and you then realise there are more avenues to explore than what you first thought.

I hope he is soon on the mend and feeling much better and that you are able to keep strong and postive

Pauline

[susannahParticipant]

Hi Chelle So sorry youre hubby is having such a bad time,I know how helpless you must feel

Big hugs to you both

Sue

[CarolBradley1Participant]

Hi Chelle
Only just read of your rotten news and I am so sorry that it´s taking a while to find the right treatment for your husband and obviously taking it out of your both in different ways. We all understand that it´s very hard to remain positive – at times all we can do is keep going whilst we let the doctors try and figure things out on our behalf. I was pretty down when Velcade didn´t work for me as I thought it was the answer to everything and even Revlimid was very slow but I had my transplant in Feb of this year and am in remission at present.
Although I can´t offer any medical advice I do send my support and prayers to you both.
Love Carol xxx

[ChelleMcParticipant]

Hi. Just wanted to Thank everyone for the lovely words of wisdom. We are back at the Consultant in the morning so fingers crossed. I do try and stay positive I just hate getting knocked back 2 steps after going ahead 1.. Guess that's the name of the game though… Thank you again.. Will let you all know what happens at the Consultant. xx

[lorraineyParticipant]

Hi Chelle,

Sorry i've only just seen your post and want to say Good Luck at the hospital today, I'll be thinking of you and hoping you get a positive treatment plan for your husband.

Take care

love n hugs Lorraine xxx

[ChelleMcParticipant]

Hi all..
Thank you again for the lovely words. We saw Phil's Consultant today. He doesn't think the Revlimid is working like it should. Doesn't think it is a "Blip" since the levels have gone up that much. Going to stay on the Revlimid for now and been referred back to Dr Cook @ Birmingham to hopefully start on the Bendemustine Trial. He was too ill before but should meet the criteria at the moment. Fingers crossed he stays healthy enough to start that ASAP.
On another note I'm not sure where any of you are but I have started a Support Group at Queen's Hospital Burton. The 1st meeting is 12 Oct and will be bi-monthly in between Derby's Group. Please feel free to contact me for any information. Would love to see any of you there. All the best. Hope you all are feeling well. Thoughts & Prayers are with you all. Thanks so much!! xx

[tomParticipant]

Hi Chelle

I hope Phil stays healthy to get on the trial, and its a shame that the other's didn't work 🙁

Once again Good Luck with the support group8-)

Love
Tom "Onwards and Upwards" xx

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