[blobgobParticipant]

I wish you well with your semi-retirement Rabbit!

[blobgobParticipant]

Hi Rabbit,

I hope you enjoy your part time retirement. I guess a lot depends on your age as to your options, certainly regarding your finances.

I was diagnosed with MM when I had just turned 65, in 2021, and was off work for 7 months due to my chemo and then stem cell transplant. So I was just short of the current retirement age (66) when I was ready to go back to work. The thought of having to do the daily commute into London at least 4 days a week, was not very appealing, having worked from home during Covid times, so I took my employers offer which paid me up till I was 66 and left.

I’ve joined a few clubs that I’ve been planning to join for years, and what with other involvements, I find I have to manage my time so I don’t get worn out! If anything, I wish I had retired earlier. But then my pension pot would have been hit harder till I started to get my government pension.

The times I felt most tired, were a few months after my stem cell transplant, but this was improved dramatically, after I was found to be anaemic due to iron deficiency, and a few bags of Iron injections later, my Haemoglobin was back up to normal levels and I definitely felt I had more energy.

Good for your kids, start spending immediately before they change their mind! 😉

Best wishes,
Derek

[blobgobParticipant]

Successful or not??

[blobgobParticipant]

My low Hb (98) was caused by some form of Iron Deficiency, confirmed by hospital blood test. My blood Iron level was close to zero! Plenty in my red blood cells, but not enough to help with their regeneration in my bone marrow.

I was given two top up boosts of Iron in hospital, iv drip.

My Haemoglobin shot up after this to normal levels (140). You can get kits on Amazon to measure your Hb by pricking your finger. I would though stress to go by what your hospital blood test results are, and use the home kit to monitor whether your Hb is going up or down.

I also take a daily iron supplement tablet to try to ensure my Iron does not get too low again. I found the hospital tablets had an adverse effect with my bowel movements, but they warn you of this. Its the high amount of iron in each tablet, 200 mg. I’ve since found 40 mg tablets that I don’t seem to have any side effects with.

[blobgobParticipant]

I had my transplant two and a half years ago. I would very much like to think I have got back to a relatively normal life since then. I didn’t get everything going. I caught Covid once, and that was mild. I had just had my third Covid Vaccine.

• This reply was modified 2 months ago by  blobgob.

[blobgobParticipant]

I would be willing to sign up as well.

I’ll try to catch any future forum updates on this.

[blobgobParticipant]

I found this happened to me a lot initially (long suffering colds) but once I was able to get back on the vaccination track, and get up to date with all the covid and flu jabs, I now find that colds don’t seem to come around so often.

I even caught Covid last summer, but it only hit me bad for about 48 hours (at home) and then I recovered fast. At that point I was up to date with the vaccines.

So until you get fully vaccinated feel free to rant here if it helps gc! That was a pretty minor rant IMHO though….. 😉

[blobgobParticipant]

Referring to Emily’s blood results quoted on Dec 2, the Potassium result is low, but not dangerously so. I would expect that it would have been repeated by now.

None of the results quoted give any indication as to the Calcium value.

I had both high and low calcium during my initial treatment for Multiple Myeloma almost 3 years ago, high on diagnosis, and then low after the treatment for the high calcium value. I knew it was too low when my hands started locking up on me! A quick hospital visit and an IV invusion with Calcium in it, soon sorted that!

[blobgobParticipant]

Thanks for replying Rebecca.

I’m quite a few years behind you in this journey, so I can only hope I make it as many years post SCT as you before I need possibly a second SCT. The other half of my sample awaits me in storage!

Until reading this forum I was not aware it was even possible to go 10+ years SCT in remission. But I also know many people don’t go anywhere near that far.

As you say it is a very individual journey.

Thanks for giving me a little more hope!

[blobgobParticipant]

Hi Rebecca,

That is indeed encouraging to hear that you have gone 11 years post SCT with no further treatment. I appreciate that this is not the norm, at least not at present!

Are you on any maintenance treatment such as lenalidomide?

Regards,
Derek

[blobgobParticipant]

Hi Missm,

I’m also in the “lambda light chain club” and your initial diagnosis reminds me very much of how my cancer was picked up!

My kidney function was down to 12% on hospital admission via A&E, but after five chemo cycles I was in full remission and my kidney function was back to normal. That is where we differ, with regards to kidney function.

So when I went in for my SCT I was feeling pretty much ok, but that quickly changed after the malfalin, and the next 10 or so days was spent lying on my hospital bed hoping I would feel better the next day.

But I did get better, and was out of hospital after 2 weeks, less my hair and a little weight. It took a few more months to fully recover.

As to whether you should go ahead or not due to your reduced kidney function, I think if I was in your situation I would go along with what the experts say. This is after all what they do every day. Any treatment to reduce your paraprotein levels is going to improve your kidneys long term efficiency.

Best wishes,
Derek

[blobgobParticipant]

I was lucky, my bone marrow biopsy was painless. It was taken from the base of my spine when I was an inpatient in hospital. It was taken by a junior doctor under supervision of my consultant!

This confirmed Multiple Myeloma and my treatment started a day or two later. 5 cycles later I was in remission.

[blobgobParticipant]

Apologies, I was in hospital for 2 weeks when I had my SCT not one, but I can’t see any way to edit my earlier message.

[blobgobParticipant]

I had lesions and fractures all over my torso, when I was initially diagnosed, the worst being when I cracked my sternum after I had a “mega” sneeze! So every time I coughed or sneezed after that I screamed and everyone thought I was having a heart attack! I dreaded the next sneeze which often came on me suddenly.

But my lesions had all healed after 5 rounds of chemo (Velicade, Dexamethazone, Thalidomide) so when I went for my SCT I was feeling quite good and fully mobile, and sneezing without pain!

But withing 24 hours of taking my Malphalan, I was pretty much bed bound as I felt so weak, with a commode by the side of my bed, as getting to the loo was such an effort even though it was not far away. For the next week, I pretty much lay on my bed and watched videos, and snoozed a lot. But after a week I was able to walk out the ward, Kings in London, and things just got better and better from there.

[Author]

Posts