[blobgobParticipant]

I had an ASCT in 2021 during Covid. So no problem with visitors as no one was allowed any!

I was in hospital for about 2 weeks. The first of which was pretty horrible due to the initial treatment. The second week was waiting until my platelet and neutrophil counts got up above a certain level. They infused a couple of bags of platelets to help me along!

I could not have managed at home for the next month without the full time help of my wife, who took time off work to care for me. I bought a mobility chair which I slept in for the first few weeks, as it made it much easier to get up and down. I needed to use support rails to get up when in bed.

But in the end it was all worth it. I was back to mostly normal in around 3 months.

[blobgobParticipant]

Replying to Lynn,

I too had a skin reaction after a period on Lenalidomide and came off it for a few weeks.

I restarted on the same dose, 10mg daily for 3 weeks with a week off, and have had no similar reaction since. Click on my profile name for more details.

Derek

[blobgobParticipant]

Hi Dennis,

The doctors have the advantage of seeing the charts of your long term Hb and WBC results, and if they are falling then this indeed a cause for concern.

I too recently had another bone marrow biopsy as my neutrophils are down a bit. As it is a pretty painless outpatient process taking under and hour, why don’t you just go ahead with this and then you can discuss future options with your consultant?

Regards,
Derek

[blobgobParticipant]

Sainsbury’s sell Lindt Excellence Supreme Dark which has a big label on the front saying 90% Cocoa.

I’ve got a bar but not tried it yet, am starting off with the Mint Intense bar!

[blobgobParticipant]

Do you know how long the effect lasts for?

[blobgobParticipant]

@lablady

I went off coffee for 9 months during my initial treatment and then Stem Cell Transplant. Both coffee and beer were just not of interest to me! And I was a regular coffee drinker before that.

But gradually the coffee taste came back to me and I now drink it regularly, with the occasional tea!

[blobgobParticipant]

Hi Rabbit,

I’ll be reading, so please post your output on Healthy eating!

Regards,
Derek

[blobgobParticipant]

I’ve been on Lenalidomide for 2 years. I’ve always taken it in the morning with breakfast, 21 days on, 7 days off, 10mg.

No issue with my sleep pattern.

[blobgobParticipant]

Interesting idea Pongo, I’ll bear that in mind if I regress and have to go back to infections around that area!

I recall at one point I was all black and blue in that area, but it didn’t cause me any discomfort.

you are definitely not teaching me to suck eggs 😉

• This reply was modified 10 months, 2 weeks ago by  blobgob. Reason: To tick follow up box

[blobgobParticipant]

I also saw that article on SmartPatients a few months ago.

It leaves you with the question is the change a lab error, and if it is not, then is it significant or not. It may not be related to your MM!

What did your consultant say Jbal?

[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 11 months 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!

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