Frances/tw744,
I am coming up to “my first birthday” and have been on Revlimid since last July.
I have serious questions about any drugs, but take on board professional advice. I have just taken a 3 week break in my course to check on side effects as I feel tiredness, along with other feelings/ailments being commonplace since starting this drug. I was feeling really good back last June before starting Revlimid. The big question is”do we need this drug for a longer remission?” I still felt tired, but then I consider how long does it take to get out of the system?
It is always hard to decide what to do as we are told “everyone is different”.
From what you have told us you have been taking this regularly for 6-7 years, where had you been getting this from, as from what I believe, it has only been prescribed and formally sanctioned by NICE in the last couple of years.
The Lanalidomide debate goes on!
I too had my SCT in March and am now in remission, all blood counts are fine and the paraprotein levels are barely detectable.
At the end of June my consultant advised me to go onto Revlimid/Lanalidomide which I did. Since then I became more fatigued, so last week we decided to come off of the drug for a month to see how or if I improve. I see that Mulberry has been on this for two years, is that after the first or second SCT?
This period has also coincided with me returning to work in a phased manor, which is great, but the fatigue appears to still be effecting me and is ever so frustrating.
Has anyone else had this issue and does it get any better?
I still have minor issues with neuropathy but the fatigue issue is the one that is causing me most concern and playing on my mind and beginning to affect my confidence and possible well being!
It does not help when I am affected by the irritating cold bug that has been doing the rounds, but so far so good no COVID.
Wishing everyone the best!
Maggie
Many thanks for your post, it gives me great pleasure that someone like your husband has just carried on, I hope all is well since your last post?
I have only just undergone my SCT harvest yesterday and had the worst headache. Headaches and bone pain are something that I have been experiencing in the last 3-4 months. At this point I must point out that each person is different, so side affects will be different.
My consultant at my transplant hospital recommends that I should have an MRI after my procedure, so that should show if there are any issues in my back. This all started with cracked ribs after falling over some awning guy lines on our caravan!!
I must say that we must trust in the professionals and follow their guidance.
I have never been a great one for the technical medical side of things.
We hope to be in the transplant stage in early March.
Everyone says that you must be positive @nd push on through!
Away from this I would like to ask if anyone has tried CBD oil/capsules?
I have just undergone my SCT harvest yesterday and had the worst headache. Headaches and bone pain are something that I have been experiencing in the last 3-4 months. At this point I must point out that each person is different, so side affects will be different.
My consultant at my transplant hospital recommends that I should have an MRI after my procedure, so that should show if there are any issues in my back.
I must say that we must trust in the professionals and follow their guidance.
I have never been a great one for the technical medical side of things.
We hope to be in the transplant stage in early March.
Away from this I would like to ask if anyone has tried CBD oil/capsules?
Rach15
Many thanks
I have just undergone my SCT harvest yesterday and had the worst headache. Headaches and bone pain are something that I have been experiencing in the last 3-4 months. At this point I must point out that each person is different, so side affects will be different.
My consultant at my transplant hospital recommends that I should have an MRI after my procedure, so that should show if there are any issues in my back.
I must say that we must trust in the professionals and follow their guidance.
I have never been a great one for the technical medical side of things.
We hope to be in the transplant stage in early March.
Away from this I would like to ask if anyone has tried CBD oil/capsules?
I have just undergone my SCT harvest yesterday and had the worst headache. Headaches and bone pain are something that I have been experiencing in the last 3-4 months. At this point I must point out that each person is different, so side affects will be different.
My consultant at my transplant hospital recommends that I should have an MRI after my procedure, so that should show any issues.
I must also say that we must trust in the professionals and follow their guidance.
Away from this I would like to ask if anyone has tried CBD oil/capsules?
I am in Hospital tomorrow to start the harvest for my SCT!! Not sure when the SCT is going to be, but from the people I’ve spoken to the biggest issue with this condition is getting your mind around what is going on and keep your eye on the end goal!!
Just keep your eye on the light at the end of the tunnel and be strong. I am 55 and was diagnosed last August, the NHS have been excellent professionals throughout the whole process of my treatment.
Back in October I tried to go back to work as I felt fine, but I soon had to step back as the side effects (stress and headaches, among others) were just too much. But when I spoke to a phsycologist, it was only then that i decided that, as my family and friends had already told me, your health must come first!
The side affects are wierd but work through them, it’s the steroids!! Keep a diary and tell yours nurses everything, they are great!!
Every step I go through seems tough but they are hurdles that you do overcome! My latest one was injecting myself….no problem!!
Remember, a long remission is our end goal and it is achieved through being strong and determined.
Stay safe and keep well
Many thanks, I start my home injections next week in prep for the harvest(first time of injecting myself but hopefully should be fine!!)
The reality is now happening but must keep focused on completing the process, recovering and then getting back to work!!
How long do people normally take before they feel fine to go back to work I’ve been told between 2-3 months!??
Yes indeed, many thanks, it just takes so much getting used to!!
I’m now on the countdown to my SCT, just waiting for letters and confirmation between hospitals.
So far I can’t say enough about the NHS and the service they are continuing to provide in these difficult times!
Just pushing towards the light at the end of the tunnel and hen it’s all over……?!
Back to normal👍
All
New to the forums and appreciate all your honesty, I was diagnosed in Sept 20 and have just started cycle 6 with an imminent consultation in prep for my STC.
I am 54 and although not a great lover of forums, I have gleaned info from these as there are many similarities, today being a bad day as two days after a Dex,Zometo,Velcade dose!!But it should pass, all other symptoms are like a rollercoaster! Discussed with others and I must say that you have to be true to yourself, look at the light at the end of the tunnel and reach that goal!
One thing that raises its ugly head all the time is the mental challenge of the process, keep a diary, talk to you nurses but most of all be strong and be positive that you WILL come out of the other end, having a long, healthy remission!
Stay safe and keep well
Many thanks for your blog! Very interesting!
I was diagnosed with MM back in Aug/Sept and am currently starting cycle 6 with an appointment to see the consultant at Hammersmith this Friday, hopefully to give me dates for my SCT. COVID allowable?
I have just scanned your blog, but will read it thoroughly to see what is expected!
I hear the intensive chemo in hospital is ‘brutal’?
How are you doing now?
Wishing you all the best
