[deanParticipant]

Hi Rebecca

Good luck with the blood test.. it must be a nice thought to look back from where you were 3 years ago. You have done so well. It’s all that fitness you do. I have my Sct next Tuesday depending if a bed is free. You must know that feeling, I don’t mind saying I’m getting down & scared but needs to be done.  My hospital were thinking of a allogeneic soon after as a fish test was not done. Also I am IGA & one doctor said can be aggressive and other not sure.. All guess work. Maybe a fish test doesn’t tell the true picture and time will always tell. So at the moment the allogeneic is on hold to later.. I just need to deal with this Sct at present. At least from diagnoses to Sct it’s all happend in 7 months just this hard bit left…2016 a year i will never forget. just hoping I be able to be ok ish for the girls on Xmas day. In the meantime thanks for all your advise since my diagnosis you have been a great help. Dean

[deanParticipant]

Hi.

Have you called the nurses at Myeloma uk?  They are really helpful and maybe able to advise you. As you were diagnosed with myeloma years back they should be listening to you that’s really bad.. hopefully it could be something else… was it just the one SCT transplant you had years back?? I thought after 10 years there is less chance of it returning?? Either way they should be listening to you. Good luck

Regards Dean

[deanParticipant]

Thank you Scott will drop you a email very soon.

Thanks again Rebecca.                             I have personally decided to go for it early ( my wife is worried & wants maybe to put on hold for later) but I feel for me & for the kids this is the best time. Doctors still haven’t decided yet to go now or later but I think evidence shows if in CR which touch wood I still am it’s the best outcome plus I want to do this on my terms not the myeloma’s. Big decisions I just hope I get the green light. Hope all is going well your end…

[deanParticipant]

Hi Maureen

I defenitly agree with Rebecca on a second opinion. There has to be away for you to be able to get the next set of drugs for when your husband may need them for later. I’ve also got a Myeloma specialist as back up & he just double checks my team are making the right decisions. His miles away but worth the trip.  It makes me so angry that the drugs are out there but you have to go through all the extra stress to get them. If it helps I think the new drugs are as you said : daratumumab, then elotuzumab & Panobinostat. So there is more drugs out there for your husband it’s just getting them. I also remember my Myeloma specialist saying to me that if Velcade etc has stopped working, it doesn’t mean you can’t go back to them starting from the first ones which stopped working. After a break from being used they can become effective again & changing the mix. It’s all about planing & keeping your guns in reserve etc was his words to me. Good luck and hope it’s helps.  Regards Dean

[deanParticipant]

Hi Greg

Thanks to replying.

I do have a few things to ask you if possible. Is it possible to call you or email you? Not sure how we give our contact details out maybe in the inbox? If you don’t want to no worries I will understand.  Thanks Dean

[deanParticipant]

Hi.

Just wondering if anyone out there has had a allogeneic transplant?  My Doctors are thinking of doing a allogeneic transplant shortly after my SCT coming up this November or waiting if i relapse. There still deciding.  I have heard it’s better to do Allogeneic transplant early when in remission but then I’ve also heard of people doing it later and it has worked out still well. Any tips would be great thanks Dean

[deanParticipant]

Thanks for all the tips.. it really helps me.. regards Dean

[deanParticipant]

Thanks Rebecca for all your advise sorry that I have been keeping you busy.  Yes the hospital said there is a high chance I be on a open ward for the first week until my blood levels drop so not happy about that when sick… they also do transplants now for patients who need dialysis for there kidneys. . Got the impression it’s getting common. Also from next year they will be sending patients home after there chemo ( like they do in the states now) as most patients get infections from there body not others. Either way for piece of mind I want to be in hospital if given the choice.. A big thanks again

Regards Dean

[deanParticipant]

Hi Rebecca

Just had our meeting with the team regarding my transplant. So much to take in that I got to the point where I didn’t want to take anymore ino in.. Due to a shortage of beds I was warned that when I have my chemo I will be in a open ward.. Not happy about dealing with bad sickness etc, would rather my own room for that, but it is what it is. Did you find the chemo sickness bad? They told me I will be in for 4 weeks if lucky then 3 weeks.. just hate this hanging around now, roll on November as I don’t want to be to ill for the kids at xmas… All the best & thanks again for your tips

Peter,  Yes it’s always interesting to get all different info approaches regarding MM. All the best Dean

[deanParticipant]

Hi Rebecca,

A very good point. I got your impression when I asked my Doctor “can I have my stemcell transplant later”..? Probably because I’m on the young side, the doctor looked at me in shock horror that I can even think like this & ask.. Anyway I’m going ahead with it but don’t hurt to ask but that’s when I realised,   I’m restricted here..

Anyway I had this discussion with Myeloma uk regarding the above & they said even though USA are ahead our survial rates are the same.. So who knows, all I know that MM causes alot of mind games as No one really knows even the experts. Also it’s amazing how some of the best MM doctors in the uk have gone to the USA now….

As you were telling me you are classed a ” high risk” I thought of a story I watched on you tube. There is a MM patient also high risk called Yelak Biru. He has now been living with a high risk MM for 23yrs never had a Sct. His choice. His MM always responds well to treatment even though it’s agresive. Have you heard his story?  So as you said ” every one is different & who really knows with MM… we just have to go with it regardless .

I should have my results from my fish test any day now, will be interesting to see what it comes back as..

All the best

Regards Dean

 

 

[deanParticipant]

Hi Sarah

Yes all the info was a great help. Like you I don’t like all this waiting around. All the best Dean

[deanParticipant]

Hi Rebecca

I hope you don’t mind me joining in this conversation. Did you get your fish test done on your first bone marrow byopsie?  My hospital didn’t do it. When I asked, they have just recently done the test from my second byopsie as I finished my induction treatment last month. Now getting ready for my stemcell transplant around November getting scared for that… My doctor said I’m in remission the average person being 18 month’s before I relpase if I don’t go for Sct. But how do I know I’m average if they didn’t do a fish test.. Glad to hear all is going well your end.

Regards Dean

[deanParticipant]

Hi

Like you finding it tough.. more the worry etc as I have a young family.  Hopefully the stemcell transplant does the job for a while and get to family life with my girls.. fingers crossed.  I got to a bad start with chemo but got through it. Now not had any chemo for 3 weeks on a break until end of October then stemcel. Abit scared goung through it but needs to be done.. the velcade gave me a rush around the injection otherwise it was fine…does the zomta effect you? So far I’m ok with it….Good luck your end. If you ever want to chat by phone or email if it helps just let no. All the best

[deanParticipant]

Hi Carmen.

I know it’s hard, I’m still trying to get my head around it all still when I was diagnosed back in April. We can’t change it now, we have to deal with it unfortunately.. I’m 42 and half maltese. My mum who is also called Carmen lives in mgar… have they given you options to where you can have your Sct??? I did hear that Malta has a set up with Kings collage in london where I’m due to have my Sct soon. They also have accommodation near by for family.. this is what I was told from my mum in Malta who new some one in Malta who used kings but maybe the rules have changed now. Not sure if this helps?

[deanParticipant]

Hi Sarah

My harvest is about 2 weeks after you but not been given a date yet for transplant. Yes it’s all so much to take in and the worry of it all etc.. either way I think we will be days or weeks us two having it done. . If you want a chat about it all etc by all means inbox me your number and we can chat to help each other. But if you don’t want to for now I will understand I leave it to you…. All the best

Dean

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