Multiple Myeloma

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Hi  and a second welcome to the Online Community but always sorry to see folks finding us.

Johnty has given you some good information and to further help you navigate Stem Cell Transplant (SCT) can I highlight our dedicated SCT Forum.

Follow the link at the bottom and join the forum and have a look round. The best way to get support is to hit the ‘Start a Discussion’ tab and start a new thread and introduce yourself and ask your questions. Remember to go to the right of the SCT home page and select how you want to receive email notifications when someone reply’s to a post.

I have had two SCTs with cells from my brother and totally understand the rollercoaster, but you have to see this as a means to and end. Yes it was hard work at times but all do-able.

It would be really useful if you could put something into your profile as this does help others when replying to you or for those looking for support and information as they can read a bit about your journey so far.

Just click on your username and then select 'Edit Profile' under the 'Profile Settings'. If you're not sure what sort of thing to put just click on my username, Thehighlander to read my profile but my journey was rather long so it is a touch like War and Peace ;)

I will keep an eye open for you in the SCT Forum.

Please lets us walk this journey with you.

((hugs))

Stem Cell Transplant Forum

Thank you Johnty, I have not done my induction as yet as my still on my last treatment they have told me my stem cell transplant will be in April no dates given as yet.

i was diagnosed in December 2018. Prior to that for over s year my skin in my hands was sore and peeling I could not do anything without wearing cotton gloves saw the dermatologist they did tests and came up with I should not use products with paraban , perfume etc. I did all that still no change. One fine day my GP saw in my blood results my ESR was too high and informed me my body was fighting my own antibodies! he than referred me to a Rhumotologist I got an appointment after 8 months and when she saw me she sent me for tests and blood too left it at that. Saw me in 3 months again and said everything is fine and I will have to discharge you! I begged her not to and to see me one more time. So I got an appointment for October 2018 with God’s Help another Doctor checked me before he called the Doctor oh my my what a good check this doctor did dnd when she the original doctor came to the room she looked at the screen and told the doctor oh everything is fine she can go.... this new doctor told her please sit on the chair  and look at the blood results so she did and the colour of her face changed and she told him to go ahead with getting blood test again as that’s what he requested and before leaving the room she told him “before you write anything I want to read” she knew she had missed out on important  info!!! Anyways 2 days later the young doctor who had seen the disorder in the blood called and informed me I would be getting a haematology appointment and further tests. I was a nervous rack v frightened.

i had a bone marrow biopsy within two weeks and a ct scan as I’m v claustrophobic I could not do a MRI and was informed by the consultant I had Multiple Myeloma  v sad I know lot of people are going through this journey but very tough especially for those who are completely alone with absolutely no family at living alone. 

That’s how I found out about my Myeloma.

All on this journey we pray we all go in remission after our treatments.

God Bless 

Hi Lizzie65,

Sorry you are here. I was in your shoes many years ago having been diagnosed with MM in 2005. It took nearly eight months using Thalidomide (a truly nasty drug but there's better stuff now) to get the cancer under control before I could get into the SCT program.

The stem cell transplant program isn't a cakewalk. I made it through by focusing on today only and dealing with tomorrow''s events tomorrow. I figured knowing what's to come only added stress and I didn't need more of that.

I started with the stem cell collection and progressed to the autologous stem cell transplant after aggressive chemotherapy. For the first week, I didn't really know where I was. By the end of the second week, I started to feel better and mid-third week I was sent home for 90 days to "recover" before the allogeneic stem cell transplant.

I have two sisters and, against all odds, they were both perfect matches as donors. The morning my younger sister finished her stem cell donation, I got 36 minutes of total body irradiation in preparation for the transfusion. The radiation caused my newly regrown bone marrow to fail slowly. It took about a month for the donor cells to fully replace mine. The cancer disappeared with that transplant as my sister's immune system attacked and destroyed the few remaining cells. During this entire process, I had 14 bone marrow biopsies. My doctor was running a parallel blood test called Immunofixation Electrophoresis (IFE) that offers the same information as a BMB - without all the pain. My doctor had to first prove that the IFE test actually gave him the same information as the BMB, though, which is why it was run in parallel..

So here I am 13 years later with the cancer is still in complete remission. The most recent IFE test from last Tuesday still shows I am free of the cancer. .My graft-versus-host-disease (GVHD) was at such a low level I never have need immune suppression.

I know you can't see past the here-and-now to when this is done. I certainly couldn't.   I never thought I'd ever see the Okavango Delta in Botswana, the Galapagos in Ecuador or Machu Picchu in Peru but I've since done all of that as well as traveled to many other places in Africa, Europe and Asia. I just returned from 18 days in Madagascar. This February I'm going to Costa Rica. My companion in all this travel had bone cancer twice (in 1988 and 2000) and she too is in remission. I guess we're on a mission to do that which we never thought we would ever get to do.