[jeapal23Participant]

Mike s starting h&s third cycle of velcade on Monday and so far not too many problems. Feels exhausted a lot of the time and a little more grumpy. His pp levels ave dropped from 60 to 34 after one cycle. We're owing on a sort Olay to Cornwall soon, this should give mike a much need boost and me

[mhnevillParticipant]

Glad to hear that Velcade is working for Mike. Probably helps to make the bad temper bearable!

Hope your holiday gives you both a much needed rest.

Best wishes.

Mavis

[eveParticipant]

Hi Jean

Grumpy sounds like the Dex is Mike on 20 or 40 m,when you stop and think about it,40 for 4days at a time is a lot of Dex. Slim seemed much better on Dex body wise but hated going to hospital twice for bloods then twice for Velcade,so glad when the whole lot finished,but I believe not every hospital is like the one we are experienceing,I think Dai had the shortest stay for bloods and Velcade which was 1. 1/2 hours tops.

Lets hope it will not last to long,and when Mike starts getting grumpy remind him of the Dexitude word, but he will insist he is right anyway.,
Slims on Rividimid ,so it's once a month bloods on Friday,Zometa and Rividimid on Monday once a month. Eve

[jeapal23Participant]

I think we are lucky, mike has his treatment at home the nurse comes twice a week for two weeks and on the third week we go for a review and more bloods at the hospital he had his first infusion of zometa, that was a two hour wait for 15min treatment, but he got fed and there was free coffee. The consultant passed by while we where waiting and his PP level is in the twenty s he could remember the exact number but it is getting lower. MIke has been put on now 20mg of the Rex this has been reduced which was another good thing.

[eveParticipant]

Hi Jean

Lucky,!!!! That's star treatment,it would suit us!!!

I like thr Rex instead of Dex,Food free food,my you are spoilt :-S ,in all 2 1/2 years of going to hospital Slim has been offered food twice,most times I take banana,s in plus cans of fizzy drinks as he finds these easy, I can remember. Once he was admitted after. Being in A&E for ages, I asked had they some food because he had not eaten most of the afternoon and evening,the nurse came along with a pâté sandwich I explained he was NP so no pâté or any processed food,I found some weetibix for him!!!.

The high,s and low,s of Dex are many I was talking to my daughter today,she suggest I should write everything down,there is a book in there some were, it would have to be called Living With Dextitude. Love Eve

[DaiCroParticipant]

Hi Eve,

I too thought that being a grumpy old man (or a fly with St Vitus's Jump) were the main drawbacks of Dexamethasone (full name now that I have resin to give the medicine added respect) but like you I have had cause to review the power and import of our friend Dex.

I entered the Day Case on Monday feeling very ill indeed, with mental problems that needed addressing immediately – I though that I was in for a hard long battle, with both my short and long term treatments needing adjustment.

Thanks to the problem solving skills of my relatively young (Welsh) Doctor, who worked out that a reduction in my 'Dex-a-Dose', rather than a reduction in my Velcade (given, I assume, that Dexamethasone is normally the agent that affects behaviour) my 'mental' problems disappeared… virtually overnight.

My 2p worth.

Dai.

[eveParticipant]

Hi Dai

Dex has a lot to answer for!!!!!!,Slim had 40m when on CDT,so when he had pneumonia,his blood pressure dropped and hid the infection,hence all his problems,plus lungs scarred.
This time on CDR he has started on 20m with Revidimid every other day,each month it will be decided how much by his bloods,but as I said to the consultant today his bloods have always been good!!!!!.
wbc 11 HB 14.9 plate 70 neuts 9.2 creatine 150,as a woman my HB has never been 14.9,you can understand why they do not believe he has an infection some times apart from his plates at 70,a tiny bit low,

I do hope they keep him on 20 and not go up to 40,I do not think I could cope,with the devil of Slim on Dex,and the sad thing I think is I could be left with these horrible memories,he is a lovely man but stubborn at the best of times,but on Dex,you just cannot talk to him.

So glad you have picked up,the last few months have not been great for you,.Love Eve

[jeapal23Participant]

Well on the 2nd cycle Mike PP dropped to 26, news tonight the result on 3rd cycle 30. He has just finished cycle 4. Won't know what that result is for three weeks. They have put the Dex back up to 20mg to see if that can bring the PP level down. They were thinking that they would stop the treatment as at cycle 4 if level hadn't halved they would top as its not funded, but they are going to get it through on the 26 level as that was half. He started at 55 and not 60 like I thought. If it doesn't drop on the next round they will stop the treatment. Not sure what that means for mike as they have always been a little cautious in treating him due to the stroke he had. I hate this MM.

[eveParticipant]

Hi Jean

That's Velcade for you,they say,if your Myeloma has not been reduced by half,the NHS do not have to pay for it!!!!,may be that's why they are taking people off it !!!! Saves money.

Slim had six cycles which took him down to under 5 percent in bones from 80 percent he was able to have a SCT,but even Velcade was considered a failed drug as soon as it stops,the Myeloma was on the rise.

Has Mike had Revilidimide as that now is third option off trials??????

If Mike,s had strokes is he on full Claxane or just a preventive dose of 40m????

If Mike goes on to Revidimide make sure he goes on full dose of Claxane as Slim was on 40m and it did not prevent a thrombotic clot in artery,if he had a full dose might have not had to go through an operation plus using a wheel chair again. It just adds more problems plus hospital visits to the equation .
When he came out,no antibiotic ,so my own GP and myself agreed,he would have them,and his bloods have picked up a little bit, platelets are 37 but WbC and Neuts,have gained,making him feel a little bit better.

Hope Mike stays on Velcade as it gave Slim a better quality of life. Love Eve

[PerkymiteParticipant]

Hi Eve, where did you get this from:

[quote][i]That's Velcade for you,they say,if your Myeloma has not been reduced by half,the NHS do not have to pay for it!!!!,may be that's why they are taking people off it !!!! Saves money.[/i][/quote]

Hi Jean, I have just been pulled off Velcade, see my posts under treatment, and I was told by the Consultant that I would move onto 3rd line treatment Revlimid (not sure how you spell that)when it became necessary. My PPs started at 17 went down to 8.1 and then up to 8.4 I was pulled off at this point. I do have bad PN in both legs now, did not have it before Velcade, and this and the fact that my PPs had not gone down were sited as the reason.

Kindest regards – vasbyte

David

[eveParticipant]

Hi David

I have always known that to be the case,if they cannot reduce the Myeloma by 50 percent they do not have to pay for it!!!!,I think when Slim first started on Velcade on the MX1 trials that is what we were told,if I am right it cost around £750 per either cycle or shot not sure now.
But things have moved on from there NICE now accept Velcade as a treatment so may be this no longer applies,things do change so fast concerning treatment,now you are allowed to go back on Velcade if you responded well first time. It was still considered a failed drug for Slim.

I noticed on an earlier post you are having problems with feet,may I suggest cocoa butter oil,from boots,I massaged Slims feet and legs most night with this stuff someone recommended,and it did seem to help him,do not ask me why this stuff,but it did help.

Hope this is of some help.Eve

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