Let us know how you get on With the MRI Rosie …. all the best.
Keith x
That’s great news that your worry level has gone down; we all know what you’re going through. As Cygnet says, keep positive and remember there are lots of stories on here (like mine) with really good outcomes.
Thinking of you
Keith x
Hi Rosie,
Did you see your Doctor yesterday and what was the result?
Hope it was good news.
Keith
A key part of the SCT process (in many cases) is a high dose of chemotherapy (in my case Melphalan) and its this that kills off the cancer cells in the bone marrow. Unfortunately, this chemo also has a major effect on the entire digestive and immune systems and its this that can have a major effect on a person and take quite a while to climb out of.
My SCT was in April 2014 and although my immune system had recovered sufficiently to be released from the Royal Marsden after just 6 days, it took the best part of 2 months before I returned to some degree of normality. I felt extremely tired and had zero (and I mean zero) appetite for about a month.
Although I could probably have coped, I would not like to have gone through this without the care of my wife.
Having said all that, it sounds like your relative may be having treatment in a slightly different order if they have been confirmed as “in complete remission” before their SCT.
I hope all goes well for them. I should say that 8 months after my SCT I am also in C&E maleate remission and apart from my stamina and energy levels still recovering, I am leading a full and very happy life.
Keith
Dear Lynda,
We are all here for you and know exactly what you’re going through. This initial period is the worst because you have no facts and your mind is running wild. Once you have some more details from the consultant you’ll know what your dealing with and hopefully you’ll cope better with that knowledge.
When my wife and I heard the words “incurable cancer” we were both in a flat spin. The “good news” for you is that your husband is young enough to tough this out and come through it. I was 62 in Aug 2013 when I was diagnosed with Stage 2 MM yet here I am now in complete remission and feeling great and living a full life.
Keep posting on this forum and ask lots of questions both here and of your consultant. This is a crap illness to be diagnosed with but there is a great chance of a good outcome.
Thoughts and prayers are with you both.
Keith
Hi Johnny
By the end of my 6th cycle my paraproteins were down from 57 at diagnosis to just 2. My consultant told me that SCT would give me a much greater chance of longer remission so for me, it was a no-brainer.
My stem cell collection went very well as other was only in for one day. I think a week or so later I had my huge dose of Melphalan followed by my stem cell transplant. Yes, the Melphalan was a tough ride but my planned stay in hospital for 2-3 weeks actually turned out to be only 6 days when I was considered safe enough (from an infection point of view) to go home. The next few weeks I had no appetite but gradually felt better and since all of that treatment my paraproteins have been undetectable.
FYI I’m 63 years old and of medium fitness which may effect how you judge my experience against yours.
All the best
Keith
Hi Cygnet,
Your post brought back my memories of being told I had Myeloma in July 2013. You’ll find many posts on the forum that will scare you (well, they did me) but the one running theme is that everyone is different. Don’t focus on the scary stories but take heart from the positive ones.
When diagnosed, my only symptoms were pins and needles in my feet but I was told that my MM was at Stage 2 with a paraprotein count of 57. I had 6 cycles of CDT drugs followed by an autologous SCT and BINGO ! In complete remission since July 2014 and enjoying life to the full.
I cannot fault the overall treatment I’ve had from the NHS, everything kicked in like clockwork. As for your biopsy, I’d suggest having whatever your hospital offer you. If it is just a local anaesthetic then give that a go as many people find it perfectly bearable, just like having a toothache for a few minutes.
I wish you all the best for the journey that’s ahead of you. Mine was a breeze (OK, with a few rough days) and my one piece of advice is to keep positive and remember that you will come through this.
Big hugs.
Keith x
Just to throw in my tuppence worth. My first BMB at the Royal Surrey was during my diagnosis stage and was quite uncomfortable (6/10). When I needed a second one there I asked about sedation and was told they “wouldn’t recommend it” which, to be honest sounded more as a convenience to them than a help to me. They suggested I get a tablet from my GP to take 20 mins before the procedure which I took and made no difference. Pain scale this time was 8/10.
My 3rd and last BMB was at the Royal Marsden and when I recounted my previous experience they said straight away that I could have sedation. Canula in back of hand, sedation pumped in, fell asleep, pain 0/10.
I can understand the reluctance for sedation in busy hospitals as it does require additional procedures and staff, but for patients who genuinely want one I think it is only right that it should be made available without question. I wouldn’t have a tooth filling without a local anaesthetic and I won’t be having a BMB without sedation.
Hi Nikki,
So sorry you’ve found yourself in need of this website but this is the best place for information. Just remember that everyone is different and your journey will be unique to you but as you progress you will find the people on here who can help you most.
You say that your Myeloma is in your spine but it’s actually in your bone marrow, so all of your major bones. I know it feels very scary at first, we all felt the same. The amount of info you get from the hospital is overwhelming and the whole thing feels very daunting.
I was diagnosed last August and 2 weeks ago after my drugs and stem cell transplant I am now in complete remission. I was determined to beat this crap, I have far too many things to do with my life to let this stop me and here I am ready to enjoy every day.
Keep focused on beating it and take one day at a time. There will be some tough days ahead but you’ll get through them. People on this site are fab and will help you through this.
You’re amongst friends here.
My best wishes and thoughts.
Keith x
Just to say that last August I was diagnosed with stage 2 MM and 2 weeks ago, after CDT drugs and a stem cell transplant, was told I am in complete remission. I soon stopped reading all the scary stuff on the Internet and just focused on getting through the treatment. Yes, I had the occasional tough day but looking back now I feel I have just gone through a bad bout of flu and now I’m over it.
I would say that the people on this site have been a great source on first hand knowledge and support but like others have said, you just have to bear in mind that every patient is different.
I hope your FiL’s journey is as straightforward as mine has been.
Keith
Good luck with your next blood test David, let us know how you get on. My next test is July 23rd.
All the best,
Keith
I am quite a newbie to the forum relatively speaking but I have to say that I have found the information invaluable and the responses to my posts supportive, helpful and very friendly. I think in all forums you need to expect some direct/sharp replies but that’s partly why you post I think.
Love you all.
Keith
Like Julie, I had no infections or sepsis Nicki. They did find an infection marker in one blood test whilst I was in hospital but they instantly put me on antibiotics which god rid of it before it developed into anything.
I have to say, my whole SCT experience was very uneventful, I didn’t event feel much nausea. I counted myself very fortunate that I was only in hospital for 6 days and I’ve improved every day since then. Melphalan is a bit like swallowing a hand grenade but the human body can do amazing things to recover. I’m still relatively weak but am planning a trip to the Austrian Grand Prix in a couple of weeks and I’m sure I’ll be able to cope just fine. Certainly looking forward to the bratwurst and apple streusel which is something I couldn’t imagine just a few weeks ago.
Kevin will be fine, just remember better days are to come.
Keith
My consultant wouldn’t put a number on the benefits of SCT other than to say that evidence showed a definite increase in remission time. That was good enough for me, I’m not sure that specific numbers have any real meaning as it’s all a bit of a guessing game being that we’re all different.
As for Melphalan dosage, if I remember correctly, I had a kidney test (series of blood tests over a few hours after an injection of something radioactive) which determined the dose of Melphalan I’d get. No idea what the actual dosage was but when they gave it to me they said it was very powerful and would kill off my bone marrow within 20 minutes.
Best regards
Keith
Hi Nicki,
After my SCT in April I had 2 days of feeling absolutely fabulous. Then the Melphalan kicked in and over the next 3 days I started to feel fairly grotty and was ready to be admitted to hospital. I continued to feel a bit worse day by day for the next 3-4 days but then started the big climb out.
I would say I finally started to feel sort of “normal” (appetite back, taste back, digestive system working) by day 50 but of course everyone is different.
Best wishes for a smooth journey for Kevin, he’s absolutely right to take one day at a time.
Keith
