[john_mouldingyahoo-comParticipant]

I have been told I cannot have SCT at the moment because I have a persistant cough which no one has been able to work out what is causing it. I have had a CT scan on the lungs and am waiting an appointment with a specialist.

But is there an alternative to SCT if things don’t work out?

John

[andygParticipant]

Hi John.

There are a few of us around who haven’t had a SCT for one reason or another. Drugs can get you into remission and you can get a decent drug free period that way too.

I haven’t had a SCT but that’s due to my myeloma being difficult to treat. Don’t give up on a SCT just yet once they hopefully sort your cough out you’ll get your SCT.

Every day is a gift.

Andy.

 

[john_mouldingyahoo-comParticipant]

Hi Andy,

thanks for your reply. I see a respiratory consultant at the end of the month but this cough has been going on for a while and no-one seems to know why. Last explanation was that it must be the cancer irritating the lung.

Nice to know that drugs can do it as well although SCT appears to be the preferred way.

Keep, keeping on

John

[mhnevillParticipant]

Hi john

Like Andy I haven’t had SCT and I am in remission following six lots of CDT. Everyone is different. I feel you have to weigh up quality of life against gains. I am in my fifth year post diagnosis.

Best wishes in your decision making.

Mavis

[bandityogaParticipant]

Hi Mavis

You have been lucky that CTD has given you remission for 5 years although it did work for Ian but he only had 3 and a half cycles as he had to stop to let his bed sore heal. He had no treatment for a year then 3 cycles of velcade and dex which didn’t work, then 6 cycles of revlimid and dex which brought down FLC for 4 cycles then started rising again. He is now going for SCT and will harvest on Monday. I am praying he will get a good remission.

Have you heard from Jo?

Maureen x

[mhnevillParticipant]

Hi Maureen

You have had a hard time. I do hope and pray all goes well with Ian’s SCT and brings the longed for long remission. Do let us know how things are going.

No, I haven’t heard anything from Jo. I have wondered what has happened to her. I used to value her sensitive posts.

I think folk disappear from here for two reasons: I. They are fighting their own fight so hard they haven’t the emotional energy to post, or ii. They are in a goo dish place and don’t always want to engage with MM issues apart from there own. I find myself in this second category from time to time, then a post will draw me back in!

I am grateful to you regular contributors of the moment who are so vital, especially to new comers.

I was glad to read Helen’s posts but couldn’t find the thread to reply.

Sorry to userp your post, John. Hopefully you will be able to help others when you are further down the road.

Blessings to all.

Mavis

[jaredParticipant]

Hi all, I am new to the site but was diagnosed with multiple myeloma in January 2014.  I am on the myeloma 11 trail had combination chemo for about 6 months then radiotherapy before having a transplant in September (my own stem cells).  Unfortunately for me it hasn’t worked well and for the past 4 months I have now been on chemo again (velcade)  I will be scanned again in the next few weeks and have been told my best chance is another transplant (donor this time).  in one way I believe I am lucky as the ct scans picked up the cancer better than my weekly blood tests did, however the thought of the new transplant is worrying me as I have been told it is much more invasive and more risky than my stem cell transplant.  In fairness my SCT wasn’t as bad as it could have been however to find out the cancer would return within 4 months felt like a real set back.  Has anyone here had or no of someone who has had a donor transplant as I would like to know how they are getting ready on.  Thanks and good luck to everyone I am 46 by the way and living in North Devon.   Jared

 

[mhnevillParticipant]

Hi Jared

Welcome to the Site. Sorry to hear your SCT didn’t work for you. I think you would find Jetblack Living Blog really helpful as Jet has gone through a donner transplant and writes very helpfully about it. She is also in a similar age group to you. She doesn’t often post on here, but you can find her via your search engine. Although I haven’t had a transplant of either kind I have always found her blog inspirational and she doesn’t pull any punches.

My thoughts are with you as you make these difficult decisions.

Helen, who regularly posts is also having to contemplate going down this route.

Keep in touch.

Best wishes.

Mavis

[jaredParticipant]

Hi Mavis

 

Many thanks have checked out the JetBlack blog, have a month off of Chemo now as I am to be scanned again at the end of April to see how much myeloma is still lurking behind the scenes, if all ok been told will probably have a couple more months of chemo before the Donor Stem Cell Transplant.  still not 100% sure its the right thing but don’t really know if I have any alternatives.

 

jared

 

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