[eveParticipant]

Hi Eva

Thank you for the information,it all helps,we are not private,if we were I think I could argue a good case for having some form of maintenance,When Slim was going through his treatment with CDT,everyone thought he was on his way to remission,as his blood results have always been good,and his kappa light chains were well on there way down,only when they took a BMB they found his Myeloma had increased to 80% in the bones,So nearly six months of treatment had been wasted,It still took Velcade 6 cycles to get it under control.Over all this is a lot of chemo for the body to absorb,I feel the damage its done to achieve remission has to be questioned,I will never have,Slim back as he was,yes he is alive and I am grateful.Physically and mentally he is not the same man.
My way of thinking is if myeloma came back,would his body stand another round of Chemo,or would he be better having a maintenance drug now,to hold
the myeloma back.

As it stands at the moment,he has said if he was given the chance for a second SCT,he would not take it,the way he feels he would rather have extra good time now instead of possible taking a year to recover,he is 9 months down the line from remission and was doing very well until SCT,which has put his health back to last year.So we just have to hope for a long remission to feel this whole journey has been worth while.

As for maintenance,he has just been unlucky, Eve

[tomParticipant]

Hi Eve and Slim

I have got everything crossed that Slim has a long and healthy Remission and am sure he will do it

Love iccle ole me that "Onwards and Upwards Chap 😉 xxxxxx

[eveParticipant]

Thanks Tom

Time will tell,Slims got a chest infection at the moment,and being sick a lot,every time I think he is picking up,down he goes.At least he is holding his own at the moment

I keep telling him about you,how good you are doing,all that vodka you drink,2 years on and going strong,he,s jealous Tom lol.love Eve

[tomParticipant]

Eve and You Slim, time is what it takes am afraid no fast fix for us poor beggars :-S
The Chest is where Most of us suffer mine is bad every now and then and I stopped smoking in 09 😀

Tell Slim not to get Jel just get even, and even Better than I 😎

My Stems will be 3 years young this up and coming December 😎 not telling everyone to go on the Vodka Lol but for me it works I dont do a healthy diet, I dont do Exercice but am Happy being "Just Me" 😛

Tell that Slim to get into Toms world its great Ha ha

Love Iccle Ole Tom xxxx

[DaiCroParticipant]

Hi Eve,

The reason I questioned Slim's use of a maintenance regime at this time is two-fold.

1. He is still finding his feet after the sct, so it is very early days yet. Your consultant will look at Slim's progress (taking into consideration his case history and the mammoth effort from Slim to get where he is) and he may decide that a maintenance drug is the way to go.

2. If we look 6 months down the road Slim should be somewhere near the levels of strength and general health that will carry him forward into his remission which I truly, deeply hope will be a good few years (a la Tom).:-D

If the medics, in consultation with Slim and yourself, decide maintenance is the way forward then all well and good but it has to be remembered and considered that every drug brings with it a range of side-effects that can sometimes be as debilitating as the disease itself… and of course if the disease is dormant and under control then the maintenance side-effects will be the only fly in the ointment as slim is trying to live as normal a life as possible.:-|

The American approach of less is more is something to consider. Less drugs, less often and smaller doses… it' seems to work for them.;-)

Either way and any I wish you both relief and release from hospitals, side-effects and freedom from MM for as long as you possibly can.8-)

Dai.

[KeithH17Participant]

Hello Eve, I've been reading all the posts with regards to Slim's next treatment My first treatment was VAD then sct relapsed after 2yrs 4 months second treatment Velcade second sct then relapse after 7 months and now just starting 4th cycle of Revlimid as a third line treatment. This will be ongoing for as long as it works. Revlimid has done well for me apart from the problems the steroids have caused. I am now down to just 40ml of Dex on the first 4 days of the cycle with Rev for 21 days then a rest period of 1 week before the start of the next cycle which should eliminate most of the bad days I was having. I do hope Slim gets sorted out and gets his remission. Revlimid has managed to make my Paraprotiens undetectable after only 2 cycles so far so good now it just has to stay that way.

Eve/Slim I know it's hard going this MM business what with infections,muscle wastage and the like but we will get there we just have to keep going.

Take care.

Keith.

[KeithH17Participant]

I'm a big advocate of the American idea less is more for obvious reasons. Since I've stopped everything I've never felt better,of course I will be continuing my treatment today the 4th cycle but on a much lower dose of Dex 40ml on the first 4 days of cycle only so any bad days I have should only be during that first week after coming off the steroids rather than 3 of the 4 weeks every month. Also my Glucose levels have now stabilised and Diabetes is no longer an issue.

Good health to all.

Keith.

[eveParticipant]

Hi Keith
Good to hear you are feeling better after the large doses of Dex,Slim never had massive doses of Dex,in fact after the pneumonia,they reduced it to 20ml a day on a four day cycle on the trials,so weight loss on heavy steroids still seems iffy.

Slims in remission,and on trials is now receiving no treatment,would love to say he,s great,but has some bad days of sickness,and bowel problems,so gains weight and looses it just as quickly.

I think I might just have been expecting a better outcome once he had SCT, I sound ungrateful,hoping it all improves.Love Eve

[DaiCroParticipant]

Hi Eve,

I appreciate your concerns about Slim's progress but he is recovering from something like the equivalent of major brain or heart surgery… the SCT completely destroyed his immune system…his stem cells were given back and have to do two things:

1. Regraft onto his bones/bone marrow and start rebuilding the blocks of his immune system

2. After the redraft is complete the stem cells have to mature… and that takes months, not weeks…. it could take up to a year before he feels as 'normal' as he is going to get.

With some people it can be 4 to 6 months before they start feeling sub-normal with others up to a year… it depends how hard you push your body… and pushing is NOT a good thing. Slim needs to take it easy and take it slow, especially if his body is telling him to slow down.

You are not being ungrateful, just impatient. He will get there okay, just think of what he has been through on the last 18 months to get to this point.

Take it easy but take it… slowly.

Much love and regards8-)

Dai.

[PerkymiteParticipant]

I do not know whether I have my wires crossed here because I am way behind on the posts, I have been so busy lately. I had my one and only SCT in Nov/Dec 2010 and I have not had any maintenance drugs since then, just Loron for the Dee Old Bones. Probably not relevant but there you go!

Kindest regards ? vasbyte

David

[eveParticipant]

Hi Dai and David

Yes Dai you are right,I am impatient,it just seems to go on for ever.

David this maintenance treatment is part of the Myeloma X1 trials,after SCT you are randomised for revlimid or Zolinza,or not treatment,Slim got no treatment.

How are things going with you???? Love Eve

[DaiCroParticipant]

Hi David,

Just to bump up Eve's inquiry… how the hell are you?:-D 😎 🙂

Dai.

[Author]

Posts