Lenalidomide

[MSPH9]

Hi everyone

Good to hear how you are all doing.

Unfortunately I missed the first 15 minutes of the Zoom meeting on how to use the Forum on Friday, so I have fallen at the first hurdle - an attempt to find out how to post a new thread on lenalidomide. I think I have pressed every icon to no avail.

Anyway by way of introduction, I was diagnosed June 2019 (del 5q subtype) and was on watch and wait until last summer when I had a trial of EPO for about 6 months without any sustained improvement in my haemoglobin level. In February 2022 I was started on Lenalidomide which has had a positive effect so far, although I did need 2 units of blood in the early stages. I am interested to hear from other folk on Lenalalidomide about their experiences.

I live in rural Perthshire and am the Patient Support Ambassador for Scotland. Rather a grandiose title for what I have done so far - mainly running a few Zoom meetings with much help and support from Chris and Claudia.

I am lucky to have few symptoms and plenty of energy. I have been enjoying swimming in a local river - cycling there and back (5 miles) usually at least once a day and often (like today) twice. I enjoy walking and e biking and we are lucky to be surrounded by lovely countryside.

That’ll do for now. Need to try to remember how to do the wee bio summary that Chris has in purple at the bottom of her post.

Cheers
Mo

[Devjon]

Hi everyone

Good to hear how you are all doing.

Unfortunately I missed the first 15 minutes of the Zoom meeting on how to use the Forum on Friday, so I have fallen at the first hurdle - an attempt to find out how to post a new thread on lenalidomide. I think I have pressed every icon to no avail.

Anyway by way of introduction, I was diagnosed June 2019 (del 5q subtype) and was on watch and wait until last summer when I had a trial of EPO for about 6 months without any sustained improvement in my haemoglobin level. In February 2022 I was started on Lenalidomide which has had a positive effect so far, although I did need 2 units of blood in the early stages. I am interested to hear from other folk on Lenalalidomide about their experiences.

I live in rural Perthshire and am the Patient Support Ambassador for Scotland. Rather a grandiose title for what I have done so far - mainly running a few Zoom meetings with much help and support from Chris and Claudia.

I am lucky to have few symptoms and plenty of energy. I have been enjoying swimming in a local river - cycling there and back (5 miles) usually at least once a day and often (like today) twice. I enjoy walking and e biking and we are lucky to be surrounded by lovely countryside.

That’ll do for now. Need to try to remember how to do the wee bio summary that Chris has in purple at the bottom of her post.

Cheers
Mo

Hello Mo,

I'm still feeling my way around the forums. You sound very active, cycling followed by swimming is a Biathlon, so that makes you a Biathlete !
I think if you go to the opening page " Board Index " then click on " MDS Treatments " then click on " Lenalidomide/Revlimid, there's a button for " New Topic "
Hope this helps,
All the best,

Kevin

[RUSE7]

Hi Mo,
So glad you've had a positive response to Lenalidomide . I was interested to read that EPO didn't work for you, but Lenalidomide does. That will give all the people out there who don't have success with EPO a bit of hope. Can you share a bit more of your experience with Lenalidomide? How is it administered? How often do you take it? Have you had any side effects?
Cheers,Ronnie

[MSPH9]

Hi Ronnie and Kevin

Many thanks to you both for advice. I see I managed to post my previous post twice! At least I now see a way to reply - next hurdle will be a new post!

In answer to your questions Ronnie.

I pushed to get a second opinion from a centre of excellence which proved very useful. My own consultant (who is lovely in all respects) told me that I would need to be “transfusion dependent” before I could start on Ledalidomide which I wasn’t very happy about.
The additional opinion doctor took the view that I had to “fail at a first line treatment” eg blood transfusions or EPO (presumably because of the cost of Lenalidomide which I totally understand). He told me that folk with del5q don’t normally respond well to EPO and in my case my own EPO level was towards the top of the range where extra EPO is ineffective. Nonetheless, we went ahead and I had about 6 months of injections with a modest improvement in my Hb level initially, before it plateaued and began to fall. That triggered the prescription of Lenalidomide.


As far as this treatment goes - I am on 10 mg capsules, taken at night, 3 weeks out of 4. The patient information leaflet is “nearly the size of a bedsheet” as graphically described by as fellow patient. The list of potential common and very common side effects is extensive and the less common side effects are scary. Amusingly (as a 72 year old) I was given a 10 page booklet warning me not to get pregnant! I wish!

I was apprehensive about starting it as, apart from breathlessness uphill, I felt well with no fatigue, but I realised it was the only option beyond regular transfusions. In the event, I have had very little in the way of problems except for slight constipation which is easily controlled with fybogel. I had a fleeting rash which neither the GP nor the consultant could diagnose. It resolved spontaneously after a few weeks.

I had to have weekly blood tests for the first 8 weeks during which time my Hb dropped to its lowest 7.9 and I was strongly encouraged to have a transfusion which I did (with some reluctance and now regret - see below). This seems to be normal during the early stages of treatment and it wasn’t long before my Hb began to rise and now is around 12 +/- 0.3). I don’t feel I am quite functioning at that level and doubt is I could do a Munro like I used to, but I do notice a difference at lower levels of exertion with much lower heart rate than previously. I wear a polar heart monitor when exercising - so I can compare the same exercise before and since treatment. I guess I still have macrocytic cells which I presume don’t have the oxygen carrying capacity of normal cells.

If you have reached this bit you are doing well.

I am applying for travel insurance just now (the forum post on the subject is very helpful). My annual policy (through Nationwide bank account) insured me 2 years ago at no extra charge but now won’t cover me for MDS and I am sure it is nothing to do with treatment (which they didn’t ask about) but to do with any blood transfusion within the last year. They are not interested in the circumstances - the computer says no So I really do wish I had soldiered on a bit breathless for the week or two it took for my Hb to rise. Be warned!


Finally - a query for other Lenalidomide users

My consultant has prescribed two extra medications which I question the need for and I wonder if other folk have experience of this.

Aciclovir (an antiviral drug) to guard against shingles. I know that this seems to be a common feature for MDS sufferers but when I said I had had the Shingrix injection she pointed out that acyclovir also protected against other herpes infections eg herpes encephalitis (which I didn’t fancy).

Cotrimoxazole forte (a strong antibiotic) 3 days a week- to guard against PCP (also now known as PJP) pneumocystis pneumonia. This is a fungal infection of the lungs - the worst side effect is death.

I put up some token resistance initially especially the antibiotic which is likely to be playing havoc with my gut microbiome which I am rather keen to keep in good condition!

So …. Has anyone else had these drugs prescribed and does anyone know anything about the risks contracting of these diseases on Ledalidomide - or is it just belt and braces?

Apologies for the lengthy post if you have made it to the end. I hope some of it may be helpful to fellow del5q ers.

Mo

[chris]

Hi Mo and other lenalidomide treated people

You might be interested to read the national British Society of haematology (BSH) guidelines on this. They represent the evidence-based recommendations to all haematologists treating MDS patients. In the section on lenalidomide, there is no advice given about prescribing other drugs alongside lenalidomide.

https://onlinelibrary.wiley.com/doi/10.1111/bjh.17612

You said you’d received an additional opinion so I wonder if you might contact him and ask -especially if you are unhappy about taking additional drugs. There surely needs to be strong evidence that lenalidomide does increase your risk of these other 2 diseases?

Hope you can sort out your travel insurance satisfactorily. Annoying that a single blood transfusion (when you weren’t actually feeling that you needed it!) can lead to higher premiums or cancellation of existing policies!! But if you didn’t declare it and any other -even unrelated- health issue occurred on your holiday, they would use your non-disclosure as a reason not to pay up!!

Wish you well with it all. Will be interesting to see if any lenalidomide patients have had extra drugs prescribed.

Best wishes

Chris