[blobgobParticipant]

I was struggling to work just before I went to hospital feeling generally unwell. I did go to my GP first, but my symptoms worsened a lot while the GP was waiting on the blood tests. Once I started treatment for MM I was definitely NOT fit to work or even leave the house on my own. I was on VDT 28 day cycle treatment. After 5 cycles my cancer was in remission and I rapidly started to feel well enough to undergo an autologous SCT.

That was over 3 years ago, so far so good. But no work, as I’m retired now!

• This reply was modified 4 days, 5 hours ago by  blobgob.

[blobgobParticipant]

HI Daffodil,

After initial MM diagnosis, I was started on VDT combination, 28 day cycles, and certainly was not fit for (office) work during this time. While I had no major side effects, I was simply too weak to entertain any form of office commute, and my mind would not cope with the usual daily work pressures.

Six cycles were planned, but five was enough to get me on the list for a SCT. And after the SCT it was another 3 months before I was fit for work.

But it all seems to vary greatly for each individual. As you will no doubt see as you browse through the forum and find others advising of how it affected them.

[blobgobParticipant]

I had a red rash all over my torso, spreading to my upper thighs and behind my knees, when I first started taking Lenalidomide.

The first three weeks taking the drug were fine, then I had my planned week off.

I then started a daily 10 mg regime again, but this time the rash appeared. I was advised to come off Lenalidomide.

At my scheduled consultant haematologist appointment three weeks later, when the rash had cleared up, we both agreed I would try starting again with Lenalidomide. That was over 2 years ago and I have been fine since taking 10mg Lenalidomide 3 weeks on, 1 week off. 10mg tablet.

I was off Lenalidomide for 23 days.

[blobgobParticipant]

You should ask these questions of your consultant!

It certainly sounds as if there was an issue with your sample.

It does also happen with regular blood samples if the blood is not properly mixed when first added to the tube, but this does not happen often.

So speak to your consultant and get him to explain the results to you.

[blobgobParticipant]

I had my first, and so far only, SCT in Sep21.

I doubt I would have managed on my own, I note you lost your wife recently, so hopefully you have some other family who can be with you for a few months, I would suggest at least 3 months, possibly longer. My wife had to do a LOT for me over the next few months, even more than she normally does!

I had to purchase an electric riser chair for our living room, as I could not get up from a seat without help, so this at least meant I could get up without needing to ask my wife for help. I also slept in this for a few weeks until my new bed was delivered.

I also purchased an excellent adjustable bed from Dreams, which again enabled me to get out of bed without anyone needing to help me. (Sleepmotion 800i Adjustable Platform Bed Frame)

NHS offered me very basic guid rails to fit on my previous bed, so I could pull myself up. I declined these as it was during Covid and the person sent with them insisted he had to come into the house to fit them!

After about 4-5 months I was starting to get out and about again, with my newly regrown hair to show off! Not that I have much anyway……

I’ve long since caught up with all my jabs and find that my health is good and I don’t seem to be catching any more colds than I was before I was diagnosed. My blood count is normal now, so I appear to have enough white cells to keep most bugs at bay. I caught Covid once, but it was mild, so I must assume I can thank the vaccine for that.

Only issue I had was a low Hb a few months post SCT, but blood tests showed my Iron and Ferritin saturation were very low, or I should say REALLY REALLY low, so my consultant ordered me two bags of Iron solution IV. I was given these as an outpatient, a week apart. Within a few months my Hb went from just under 10, to 14, which is almost what it was before my MM diagnosis. I now just take a single multi-vitamin +irn tablet each day, and that seems to be keeping me stable. I definitely have more energy than I did before the Iron infusion was given.

Good luck with your treatment pj!

[blobgobParticipant]

@haze

Why not give the Myeloma Infoline a call? As suggested on the Forum Home Page.

Should you wish to discuss current treatments and care pathways you can contact the Myeloma Infoline on 0800 980 3332.

[blobgobParticipant]

@anne1

You should find that your fractures heal during chemo, and as you get stronger afterwards, you can get back in the pool! This was certainly the case with me.

During Chemo I was not able to do much other than walk about the ward, and then at home, but I realised chemo was working for me as my fractures healed. I had one particularly annoying fracture in my sternum, that meant every time I coughed or sneezed I would scream out in pain| Nursing staff used to panic thinking I was having a heart attack until I explained I was ok. This fracture healed quite early on during chemo thank goodness.

After Chemo, I had an SCT, and have been on Lenalidomide, 10mg daily (21 days, then 7 off) since Jan22.

[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]

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 8 months, 2 weeks 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!

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