[CarolBradley1Participant]

Just wanted to catch up with everyone as I haven´t visited for a while.
Couple of months after remission I was struggling on the Revlimid maintenance dose. My specialist stopped the treatment as she considered me too fragile to try anything else and in December said perhaps it was time to make the best of things. Well, I now feel much stronger in myself although the pain in back etc is getting worse although Tramadol and Oromorph are helping. I always feel much better if I can get out in the fresh air even if I can´t walk far now and sometimes even manage to go for a very gentle amble out on my horse who is a kind old chap who looks after me very well.
I suspect I have reached that point in my journey when every day that I am still quite active really does count so am being quite selfish about enjoying hobbies that are "physical" whilst still able.
Hope others on the Revlimid maintenance are doing well and not had the same difficulties.
Best wishes to you all for a positive New Year.
Carol xxx

[AmelieParticipant]

Hi Carol,
Thanks for sharing your experiences with Revlimid. I am very interested in this since it is never given here (I am in Denmark).
Are you in the UK? And is Revlimid maintenance normally offered after a sct?

I know Revlimid is not well tolerated by everybody but it is still nice to have the possibility to try it.

I wish you all the best and good luck with all your hobbies!
Amelie

[HelenParticipant]

Hello Carol
Happy new year too
I'm just finished the second month of revlimid, (Amelie it is only given as a maintenance dose to people in the uk on the myeloma xi trial)
I'm still very tired and lack energy but ok so far on it – I think. If it slows disease progression I'll keep going with it as long as I can but it's a weird choice, as I don't know what it's like to be post sct anyway! Does that make sense?
take care
Helen

[CarolBradley1Participant]

Hi Amelie and Helan
Yes, I am in the UK Amelie and as Helen explained I was on a drugs trial and so was provided with Revlimid. What treatment are you on Amelie?
To be honest I´m not really convinced that the Revlimid was to blame but I just never seemsd to "bounce back" too well after the SCT but I do remember that I was just beginning to think Great feeling just a bit better! and then was started on the Revlimid (around the 100 days post SCT I believe) and pretty quickly I was feely back to feeling under par and then worse and worse with the usual nerve damage and increased bone pain. I still tire very easily and generally speaking try to get out and about in the morning but then am resigned that the rest of the day is pretty much going to be on the sofa resting/sleeping.
Helen have you made the decision not to go for the SCT or is that still to come if it´s appropriate for you?
Well, I´m still here and managing to look after my horses and do most of the physical work unaided so it´s not all bad. Off to Spain for a few weeks to get out of the winter weather (lucky old me!) which I´m sure will do me the world of good so I am counting my blessings and feeling positive.
Take good care of yourselves and many thanks for the reply, good to talk to you.
Love Carol xxxxx

[HelenParticipant]

Hi Carol
Sorry, had my sct in august and am recovering very slowly – when I commenced revlimid again at a hundred days post transplant I was still not very well and seem to be at a sort of plateau. I had revlimid as induction treatment and it brought my light chains down to 0 in 3 months and my hb went up from 8 to14 in the same time frame so I'm keen to try it even if it makes me tired as I feel that if it slows disease progression then I must take this route for as long as possible. Of course I might feel better without it but as long as I have no devastating side effects I'm accepting that I'm much better than I was before diagnosis though not as good as I was the week immediately before sct.:-)
It's interesting to hear that you are still tired in the afternoons too, that is my low part of the day too but I'm taking less painkillers now and maybe I'm too impatient….. When was your sct?
Keep in touch
Love Helen

[CarolBradley1Participant]

Hi Helen

Had my transplant in February 2011 and we seem to have had a similar recovery history. I don´t know why my specialist thought I was too "fragile" to carry on with Revlimid although I had lost over 10% of my body weight and generally felt rotten and miserable – also tingling feet etc. My dose was 20mg which I felt was too high but we have to do what they tell us don´t we? Also, the alerts about secondary tumour incidence being higher in those taking Revlimid was beginning to worry her I think as I do have a problem on my back that hasn´t ever been explained to date just a vague "oh it´s very bad wear and tear and disc rupture". I suspect they were worried something else was developing and so decided to stop but I could be very wrong.
Anyway, I am now packing to go off to sunny Spain to rest in the sun and try and build myself back up again and I am SO excited!Think I am just really ready for a few weeks without appointments and treatments and all that goes with it!
Take very good care of yourself and let me know how you get on – fingers crossed for you.
Love Carol xxxx

[HelenParticipant]

Hmmm yes very similar, I lost masses of weight too. I'm on 25mg revlimid, they say they might reduce it if necessary, wait and see.
Hope you have a good old rest and some fun in spain it is exciting doing normal things again, I'm planning my trip to New Zealand later this year and really looking forward to it. Now all I need is insurance……
Speak soon
Love Helen

[mhnevillParticipant]

Hi Carol

Do hope your time in Spain builds you up for the next round in your fight.
Hope you are managing to do a little ridng in spite of everything.

Very best wishes.

Mavis x

[ClaudetteParticipant]

Hi Helen – you mention travel insurance. My husband was insured with LV for 10 years with myeloma excluded. However they paid out 3 times for a broken leg in France, cancelled holiday because of chest infection and the extra costs when he had heart failure in France so I can recommend them if you have problems.
In the last 5 years we only travelled in Europe because of the European link to the NHS. In fact his kidneys packed up finally when he was in France and he couldn't have had better treatment.
Good luck for a wonderful trip – Claudette

[HelenParticipant]

Thanks Claudette
That is really helpful, I've found quotes from £800 down to 200 for the 2 of us (husband is mildly asthmatic and he costs nearly as much as me!!) lv seems to come in at a handy £83 for their 'premier' cover so I'm very grateful for your help, look after yourself
Love Helen

[PerkymiteParticipant]

Helen, can I suggest that you do what I did and that is to go to your Doctor and ask him to print out your surgery medical record. it is a one line document per problem i.e. broke a leg and date. So it is not a mind blowing list of ailments. Then get him to cross through those items you do not have to inform the insurance company off, normally because they are no longer relevant.

Having done that then enter the list on any Insurance Company website and it will give you an accurate quote. Make sure you INCLUDE your ailments and not EXCLUDE them. If you exclude them your insurance is not worth taking out, that is my wife's view, who works in Insurance and has done for 30 years now.

Hope this helps we are to sunny Spain at the end of March.

Kindest regards – vasbyte

David

[adamsp41Participant]

Hi Carol…I had an SCT in Jan2011 (my anniversary coming up wooooppeeee) and have been on the maintenance programme (MYELOMA X1 trial) and I started with 25mg of Revlimid but the damn drug knocked my bloods over so I was taken off for 2 months and am now on 10mg which hopefully my body will be able to stand…I too suffer like you from fatigue and tiredness…but apart from that generally ok…hope your outside hobbies keep you active and healthy…Phil

Helen…we had a 2 week cruise August and use an insurance company called Flexicover…very competitive rates although we did go for their Gold Cover….hope this helps…Phil

[HelenParticipant]

Oh no David -now I don't know what to do! I did fill in all ailments, I'm happy to say I never had anything wrong at all before mm and husband only mild asthma ( allergic to cats- and we have one:-/ ) so all my quotes included full disclosure and I assume this is taken into consideration hence the great variation in quotes? Or have I got this wrong? I did go through the list from myeloma uk but have not yet done the telephone route as I'm waiting until I'm 6 months post sct -it seems that being an inpatient in the last 6 months raises the premium hugely.

Phil thanks too, Flexicover is about the same as LV. LV will cover me but not for myeloma, though I do wonder what could happen with that in the space of 3 weeks and I'm as much at risk as anyone else of being run over by a bus:-P and I would be covered for that. I do have to have extra deep vein thrombosis cover and a supply of anti virals and antibiotics to take in case of emergencies
Anyone else out there had experience with travel insurance? And travelling? Perhaps I should put this on a separate thread I know there is already one on here but I've no idea where to find it now:-)
Thanks for the info I've lots of time to sort it
Love Helen

[AmelieParticipant]

Thanks for the reply – I will look for information on that trial.
All the best to you.

[AmelieParticipant]

Thanks for your reply. I don't have myeloma, but my friend John has and he was not offerede Revlimid after his successful sct in August 2010. Now the myeloma seems to be back and I can't stop thinking that it might not have happened if he had got the Revlimid maintenance. On the other hand we wouldn't know if he had tolerated it.
Now we are waiting to hear when he is going to have further treatment and we expect one more sct.
Does anyone know if Revlimid can be given as maintenance after the second sct?
Love
Amelie

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