[keithmtParticipant]

Hi there all,

I’ve been following this forum since Aug 2013 when I was diagnosed with MM but I’ve not posted anything about my experience so here goes. I’ll try and keep it brief….

July 2013
Had strange pins and needles in feet, went to GP and after a couple of test was diagnosed with high paraproteins and referred to haematology consultant. Bone Marrow Biopsy confirmed paraprotein level of 57 but apart from pins and needles, no other symptoms.

August 2013
Put on CTD for 6 monthly cycles. Main side effects during this were lack of energy, bitter taste when eating, loss of appetite, continued tingling in feet and fingers.

Feb 2014
A second biopsy (I really don’t like theseA second biopsy (I really don’t like these

[keithmtParticipant]

Before I finally give up on trying to post my story, one final attempt at adding what’s been chopped off.

A second biopsy confirmed that I am ready for SCT and I am referred to the Royal Marsden. By the way, my paraprotein level had dropped as follows during my 6 months CDT…. 57 33 21 15 8 4 2.

Mar 2014
Had my cyclophosphamide chemo just over a week ago as part of the SCT mobilisation process and started 2 x G-CSF injections a day 4 days ago. Although the injections are virtually pain free I’ve been struggling more and more to do them. My brain is screaming at me that it’s just not natural to stick a needle in me. Stupid eh?
Until last night I’ve had no side effects from these injections but I’ve had a really rough night with chest and back pain. At least it’s a sign (I hope) that they’re working.

So, as of now, I have one more jabs session tonight and then I go in for my collection tomorrow. I really really hope that this all gets done by Monday eve but I’m prepared for that not to be the case and I’ll need to go back.

Just for info, since coming to the end of my CDT cycles, my bitter taste has almost gone but my lack of appetite and energy continue.

I must say that I’ve found this forum really useful during my “journey” and you all seem such a kind and helpful bunch of people.

Take care and stay safe ….. one day at a time eh?

[keithmtParticipant]

Finally ……. My story, albeit in 2 chunks, seems to be there. I have no idea what went wrong, there seem to be many other longer posts than this so any hints would be helpful.

Thanks

Keith

[CarolsymonsParticipant]

Hi Keith

I am 8 weeks post transplant and empathise with you about the side effect of CTD and the pain from the GCSF injections. At the end of 6 cycles of CDT I could barely function, but things did improve over time. I had terrible pain for a day or two from the injections and like you they became more and more difficult to do as time went on, but I was only doing 1 a day. They say the pain is a good sign for collection and in my case I did very well, collecting 15
million cells per kg of body weight in 4 hours. I do hear of many others though having to collect over 2 or more days. By the way your paraprotein went down very well with the CDT didn’t it?

I was planning to return to work on a phased return after Easter, but as they have cut my sick pay to half this month (I just received a letter and pay day is on the 26th!) I will bring the start forward to 1 April……not looking forward to it though as I am still quite fatigued and a little “spaced out” from the melphalan (high dose chemo) administered prior to
transplant. Oh well such is life as they say!

Carol

[webteamKeymaster]

Hi Keith
Sorry to see you’ve been having a few issues posting to the forum. We made some changes a while ago that cleared up a lot of these problems but it may be that your computer still has a copy of the older forum software. The best way to make sure you have the latest software is to force a refresh by holding down the CTRL key and pressing F5 when viewing the forum.

If you have any more problems please email me directly at webteam@myeloma.org.uk and I’ll be more than happy to help.

Regards
Stuart
Myeloma UK WebTeam

[keithmtParticipant]

Hi Carol,
It’s very interesting to hear your experience and comforting that what I’m experiencing is fairly “normal”. I had a similar experience with my last employer but over a different illness. I know it’s a tough call and they have to be consistent and consider employment contracts but when someone has been very I’ll it seems very harsh to start chopping their income.

I had my stem cell collection today which all went very well and they confirmed they had more than enough to start my transplant from next Monday. That’s really good news for me.

Keith

[CarolsymonsParticipant]

Hi Keith
Well done on your collection! It is a relief to have it over and done with in 1 day. Best of luck for the transplant. Hope you have smooth sailing throughout.

Carol

[rebeccaRParticipant]

Hi Keith, glad to hear your collection went well and your SCt is soon – its not pleasant but not much worse than being on treatment and you know its only for a short while and the goal of “drug free” is nearing your grasp.. Good luck and stay strong – I think attitude makes all the difference with the SCT process so am sure you’ll be fine
Best wishes Rebecca
PS I read a lot of posts about how much weight you lose during SCT so went on a binge and actually gained 10lbs (as I didn’t want to lose too much and look ill).Suffice to say I only lost 7lbs so am now having to lose the excess!

[CarolsymonsParticipant]

Hi Rebecca

I didn’t lose weight either even though I was unable to eat for several days. I need to exercise more but just cannot motivate myself. Returning to work next week on a phased return (1 hour a day or first week I hope) so will be more active then.

Carol

[rebeccaRParticipant]

Hi Carol, I should have gone back to work 20/3 (3 months) but knew if I did I wouldn’t have the energy to exercise as well so I have chosen to stay off for now and just get fit/normal again. My employers don’t mind as they’re not paying me now and did say everyone still had lots of coughs/colds there so am glad I don’t have to risk it yet. Take care on your return.

[PerkymiteParticipant]

Hi Keith, Bone pain during GCSF injections I have always considered a very good sign that you will get a harvest, so I hope all went well.

I had my SCT in Nov/Dec 2009, aged 66. I was told at the time I would only have one SCT because of my age. Never got to remission after it but a low plateau of 2.9 pp.

5 years later I am on Rivilimide, third line treatment, and low and behold I have hit the magic ZERO pp and am in Good Remission. It can be a rocky, rough path but it is worth the effort.

Best of luck to you

Kindest regards – Vasbyte

David

[Author]

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