[jennyaParticipant]

Hi,

I have just completed my 6th & final cycle of DVTD and i saw my consultant yesterday who told me that my myeloma is in total remission with my paraproteins undetectable and my light chains are within normal range.
He then explained to me that i would be going onto the maintenance drug Lenalidomide, which i was scheduled to start next week, however i asked if i could have a break from all the medication before starting, as the last cycle has really taken its toll on me both physically & mentally – so we agreed that i would start this in January.
Has anyone else had a break between treatment & maintenance and also has anyone suffered any bad side effects on the Lenalidomide?

Now i have finished my treatment i feel slightly apprehensive as to what i need to do with regards to looking after myself on this next leg of my journey. I have read about taking supplements, which i think i am going to start taking, but any advice regarding which to take would be appreciated .
Also, any advice on what kind of a diet people follow which may help me and also what kind of exercise anyone does, would be appreciated.

Thank You
Jenny A

[gcoulterParticipant]

Hi

My wife has been on Len for 2 years now and during that time has had plenty of breaks, sometimes a couple of weeks, e.g. whilst on holiday, and on one occasion for a month.
She is also in a 5 week cycle, 3 on 2 off, compared to the traditional 3 on 1 off, this was a personal choice to give her a better quality of life. She also stopped taking the dex and it affected her quality of life too much.
So just take from this whilst there are recommended treatment options it is your choice based on the information given by your team and don’t feel the need to stick to the prescribed regimes. It’s up to you, remember this is a long term condition, so generally in the bigger scheme of things a week here or there won’t matter, but in my wife’s case she wants to make sure she balances her quality of life wuth the treatment along the way.
In terms of diet and supplements, we did look into this but weren’t convinced by anything, but that’s a personal choice. I know others will have a different view but 9 years in and my wife still doesn’t take any supplements or has any special diet. She just has to be careful with some foods and they don’t agree with her as the treatment has given her a more sensitive tummy.
Enjoy the time off the medication, as you’ll hear often, this is a marathon not a sprint.

[mulberryParticipant]

Your Dr would not agree to you having a totally drug free period unless s/he assessed that the risks to you are negligible. Until a few years ago no NHS patients could have maintenance, and many enjoyed years of drug free life until relapse (some indeed are still in that drug free state)
Statistically we patients do better with maintenance, but research hasn’t been done into the effects of drug breaks- it may turn out that many of us would benefit from them.

I was on lenalidomide, 5 cycles of 25mg then 6 months 10mg then nearly 4 years 5mg.
I found lenalidomide a very benign drug. The only side effects were constipation, which I learned to control (prunes are very helpful!) and leg cramps which were brought under control with magnesium glycinate.
Certainly at 5mg I had no obvious fatigue even. I only dropped to such a low level as my neutrophils & WBC dropped on the 10mg dose so left me at risk from infections.

In terms of diet look up Dr Urvi Shah, an American Haematologist who is doing research I to myeloma and diet. She has posted things on You Tube. Also I find Tim Spector’s Zoe project useful.

Before taking supplements discuss what you intend to take with your Haematologist, just in case there are contra indicators. I’ve found they can’t recommend things as so little has been scientifically researched.
I’ve taken quite a few supplements, curcumin has certainly helped my osteoarthritis, and my autoimmune issues, but it didn’t stop the myeloma from relapsing!

I hope you have a long trouble free ‘remission’ from the myeloma.
Jane

[rabbitParticipant]

Hi Jenny,

You asked about exercise.

I am on maintenance with Lenalidomide. I have had a discussion with a specialist physiotherapist and this was her advice.

1. Walking is fine.

2. Cycling is also good. I push myself pretty hard on a stationery bike in the gym.

3. I do not have bone lesions and I had been lifting weights for years (I must emphasise that this is not for everyone with MM due to the risk of fractures). She was comfortable with me doing mainstream resistance training – chest presses, squats etc).

She advised against Pilates and yoga as the positions and moves could cause fractures.

Running at speed would be problematic (if you have heard about the forces involved being multiples of bodyweight, you can guess tgat fractures are again the issue) but jogging is OK.

When going through the worst of ‘full chemo’ even walking as exercise was a challenge (heart rate hit 110, I needed to rest frequently etc), but since maintenance started in July I have made good progress. At my best, the walking and cycling are as good as ‘the old days’!

Again, this advice was tailored to my situation and may not be applicable to everyone.

[Author]

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