[bandityogaParticipant]

Ian's light chains have not dropped very much so the doctor is increasing the dosage of steroids to 40mg and theledamoid to 100gms. He had bad side effects when he had this dose before but he also had a bad ionfection. Hopefully he will be ok this time.

What is the usual dosage and what are the side effects we should expect?

He has been moved for physio but is not happy as he is sharing a romm with 3 others. We have private insurance but no hospital in Scotland will treat the myeloma privatley.

Maureen

[PeterJamesParticipant]

Hi Maureen
I had six three week cycles on CTD
The thalidomide dose was 200 mg every day
Twice in each three week cycle I had 40 mg of dex
This was really good , turned me into Rambo with attitude ,also got rid of all my spinal pains , they are nothing to do with the MM
After the four days on dex I had twenty four hours on a real physical downer , soon went
Not really any side effects with thalidomide , all in all I went through 18 weeks of poison very well, some do , some don't
Now two weeks since I left the Christie following SCT , bloods all back to normal
Is it worth you trying to get treatment at the Christie , Manchester , their private facilities are superb , as the nurses & specialists
All the best
Peter

[tomParticipant]

Hi Maureen and Ian

Well I went through My CTD pretty well but i cant recall Dosage as mine was 2009 and i forgot he he.

Good Luck to you both and hope its a smooth Run

Peter your doing well I see keep it up and stay well

Tom Onwards and upwards

[PeterJamesParticipant]

Hi Tom
Did my 16 days at the Christie nothing but the highest praise for all the nurses & my specialist
Been home two weeks , bloods all back to normal , I have adopted your position , if specialist happy so am I !
In two weeks blood test to check where I am remission wise
Wife force feeding me to get me back on solid foods , although I have little or no sense of taste
Trying to get rid of nasty cough & get stronger , working part time
All in all so far so good
Peter

[BADGERParticipant]

Hello Maureen

when I had CDT i HAD 100MGS THALIDOMIDE everyday 40mgs of dex 4 times a week as well as a dose of cyclophosomide 250mgs once a week had this for 4 cycles it was the dex that effected me quite badly hope this helps
Jo

[bandityogaParticipant]

Hi Jo

Thanks for replying. Ian had bad side effects from the dex first time round. Couldn't sleep very anxious so I hope he will be ok this time. We do not know if he will get SCT as he has had 3 ops on his spine so he will have to be assessed later.

Have you had SCT?

Maureen

[bandityogaParticipant]

Hi Peter

Thanks for your help. Ian cannot walk so going he needs physio and treatment for myeloma. He cannot walk YET but he has been transferred to Falkirk for physio and rehabilitation.

No good having private insurance in Scotland for myeloma as no one treats it. bah

Hopefully Ian will be ok on the dex as it makes him very anxious.

Take care

Maureen

[bandityogaParticipant]

Thanks Tom

I'll keep you updated on Ian's progress. Fingers crossed he will be ok on the dex.

Beautiful day today. Might get out in the garden to tidy up.

Take care

Maureen

[tomParticipant]

Hi Peter

Well you know you and i are 16 dayer's as i was in Castle Hill for 16 days and as they say the rest is history, Keep up the Good work and am sure your Man is gonna be happy for Many a year to come 😎

Hi Maureen
Its a great Day Today we have had three Grandchildren who after staying the nite are now out in the (cold) Sun waking everyone up Bless 😀

You all enjoy today as its gonna be nice.

Love Tom Onwards and upwards xx

[BADGERParticipant]

Hi Maureen

I have not had an SCT I was diagnosed in jan 2009 With mm and renal failure kidneys still only working at 20% I chose not to go for SCT as the heavy chemo would have probably knocked my kidneys out completly didnt want to go on dialysis had CDT and got 3yrs 6 months remission have now started on velcade had three rounds of it so far it seems ok at the moment hoping to get a good remission from it
Regards Jo

[EvaParticipant]

Dear Maureen,
Best to you and Ian.
Since the myeloma treatment is oral at the moment and Ian is in hospital for rehab, it seems odd to me that some accommodation can't be reached with the insurance company. The person looking after rehab might not even be a myeloma doc. Sometimes it requires a 'team effort' to treat someone. I know that there are not supposed to be any myeloma docs practicing privately in Scotland, but rehab for spinal issues could perhaps be classified differently. Also, sometimes, treatment can be assessed by someone from afar and this person might liaise with an NHS doc in Scotland.
Eva

[mhnevillParticipant]

Hi Maureen and Ian

Just wanted to give you some encouragement about the mobility bit!!! I have had two occasions when I "crashed out" and became completely immobile. First time was because of a tumour on my spine and I was having to be hoisted everywhere till I had it removed. They warned me I might not walk again, but due to marvellous surgery, lots of prayer and effort I got going again on two crutches and was able to drive our automatic car. The second time led to my having CDT as my PP had climbed and xrays showed lots of lessions and my Comsultant was frightened of stress factures. However, now another year down the line I am in remission and my mobility is getting better in spite of worsening arthritis. I can now drive again and walk short distances on crutches. I have also bought a mobility scooter which has improved my quality of life.

There is hope of better things for Ian. It just takes time. My next objective is to get away on a short break!

Lots of love.

Mavis x

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