[MariParticipant]

Hello everyone,

I came home tonight to find Streve searching for information on Velcade. The letter had come from his consultant telling him that his BMB shows 55% myeloma cells in his bone marrow and a PP of 17, up from 5 in a month. His SCT lasted about 11 months and his disease is showing the same pattern as before, responding well, but taking hold and levels rising fast once it gets going again. His skeletal survey did not show any new damage but we know how fast it can happen and we want to avoid much more damage if at all possible. Its slightly worrying that his creatine levels are up showing possible kidney problems. It seems likely that he will start velcade before Christmas. Steve's response was an understated 'bummer'. (phew was not sure if I would get away with that, some of you may remember Steve's language can be a touch ripe on the topic of the blessed myeloma) Anyway any advice would be welcome, especially on the idea of sub cut velcade as he already has a fair bit of neuropathy after the spinal compression.

Feeling amazingly calm here tonight, its just one more go on this rollercoaster that we all ride, wheeeeeee!

Love to all,

Mari xxx PS sorry for all the jargon, we get so involved in the ins and out of this disease, I sometimes forget that not everyone gets it

[meeuuParticipant]

Good evening Mari.I have been caring for my wife for more than 5 years now, a lot of the "Jargon" goes over my head, so I will only tell you that she is on Velcade for over a year now and is doing quite well. In fact, compared to last Christmas, when she was just two months into that particulat treatment, she has certainly improved in strength and appearance. For the first few months she took Valcade twice per week but now only once a fortnight and the initial side effects (exhaustion, queezyness, eye/mouth and chest infections) are nowhere near as bad. Recently, due to reading about it on this site, we requested "Subcut" and it works a treat. Fortunately she never had very bad PN, so we are particularly lucky that way. So Mari, I suggest that you go right ahead with confidence and hopefully you will find some little light in this dark tunnel. I wish you and Streve well.
Kindest regards,
John

[eveParticipant]

Hi mari
So sorry to hear Steve, back on the roller coaster it is funny when you hit it again when Slim had his CTD and we went to see consultant,and he told us it had not worked in fact got worse we were both very calm,strange feeling,may be you get past the tears and anger first time you are told.

Velcade!!! its worked for Slim from 80% in bones to 10% in 4 cycles has it twice a week,2.3m.has had 2 more cycles. last day today until BMB and see consultant in new year.we can not tell by bloods or kappa light chains any more ,Slims blood results have always been great so its a bit of a bummer having to have BMB this will be his 4th in less than a year,but if needs must be!!!!!As Bridget said we now feel BMB is the only one to trust.

Velcade only takes 3 seconds to administer but because its not subcut,it takes 20 min altogether,you have blood test then amount decided,unless on trials it can be reduced if side effects are to much,Slim,s only side effect is lack of sleep,some heavy legs,he has had antibiotics twice while on Velcade,for chest,and testicles infection,one of the side effects a long way down the list LOL

There was an article on Velcade in the mail saying some batches of Velcade had been recalled,!!!!

Good luck lets hope the roller coaster has no steep curves Love Eve

[mhnevillParticipant]

Hi Mari

Sorry to hear Steve has taken a dive. Glad he can be a bit philosophical about it. Folk on here seem to do well on velcade. I met one of the "Velcade Three" ladies (your name sake – Marie!) on am ambulance to Leeds last year. How grateful we need to be to those who fought the Authorities to make NHS agree to pay for it. And, to think, now things have improved with it being administered by injection rather than infusion.

All very best wishes to Steve and to you.

All the blessings of Christmas.

Mavis

[TerryMGParticipant]

Hi Mari,

I think my situation is very similar to Steve. However, as I learnt from the Infoday in London, Myeloma is a very individual condition. Therefore current treatments are ?are one size fits all? do not work for everyone. The good news is that the work being done on DNA sequencing and where in the DNA helix the Protein has attached to X&Y chromosomes is giving researchers an indication which drugs work best.
I had spinal cord compression and had to learn to walk again and was not able to drive a car for nearly a year. This for someone who?s hobby is restoring sports cars was a big blow. However, having my SCT in March and then told everything was Ok in May I thought I had cracked it?. Not so! When the Hickman line was removed soon afterwards I started to get a lump at the Hickman line site which got bigger. (see newcomers: Hi I am new Help – Now that I have relapsed). Most, but not all of the tumour was removed in a 2 ½ operation in September and I started Velcade in October. So I have not had so much remission time as Steve. When I was at King College Hospital they encourage you to understand your results. When I went into relapse, I put any results I had into a spread sheet and compare them with those when I was told I was in remission. I noticed that my creatine were creeping up. I increase my fluid level by 1/3 and they came down again. On top of everything else I do not want to get kidney problems and I am very carful with walking as I do not want to break any bones. The kidney failures are caused by the breakdown of Calcium but the very fine stuff blocking the fine tubes within the Kidney. So by drinking a lot more this should really help.
With my spinal cord compression I have ?pins & needles? from the waist down so PN is more difficult to detect. However, Thalidomide gave me more issues in this area than currently Velcade does. I also read recently that hot baths help to reduce the effects of PN. So since I started Velcade I have a very hot bath every day. This and Reflexology has really helped to get feeling back in my feet.
Different Hospitals seem to have different protocols for Velcade
At Sidcup there a four of us who started Velcade on the same day.
We have Velcade on day one with:
Dexamethasone on days 1&2, 8&9,15&16, 22&23
Cyclophosomide on days 1,8,15 &22
Co-Trimoxazole on Mondays Wednesdays & Fridays.
5th week is a rest week but a clinic is arranged for the same day as you would attend for the Velcade. So it is a 5 week cycle.
Within an hour of having Velcade I get throbbing were I have had Palasmcytomas. My chest is though someone has punched me. My back, leg and ribs ache but I take this as the drug is working. My platelet count has dropped to quite low level by cycle 2 week 3 but it was just enough for me to have full strength for the 4th week. PN does not seem so much of a problem that the side affects when on Thalidomide. I wish to have full strength all the time they are allowed to give it to me. The others seem to be fine to. One could not tolerate Thalidomide but is fine on Velcade.
Sorry but I do not know what BMB is. I go on something called Igg which is within the total protein. When first ill it was 69 but went down to 6 within 3 months. On relapse this was 34 upper limit parameter is 18. My Igg result was not available last week but I will be surprised if it has not dropped.
I hope what I have written gives some comfort to Steve.I start cycle 3 tomorrow,
Regards Terry
(Failure is not an option Apollo 13 space mission.)

[eveParticipant]

Hi Terry
Come on just to tell you what BMB is,it,s Bone Marrow Biopsy.
Slim has to have them as other results do not show true readings and the only way to tell if Chemo is effective is by BMB,and general health.
Slims on a three week cycle of Velcade 2 weeks on one week off a combination of VCD on different days,just finished 6 cycle waiting on BMB results. Eve

[TerryMGParticipant]

Hi Eve,

Thanks for the explanation of the TLA?s (Three Letter Abbreviations) ?.. At the two hospitals I attend they call it this procedure: Bone Marrow Assessment or Bone Marrow Aspiration. I hope Slims results are positive as we all know what it is like to have these BMA?s or B?s so we all want good news for our troubles. Hope it is good news for you for Christmas?. Now off to Sidcup for Cycle3 week 1 + Zemeta?. Terry (Failure is not an option)

[eveParticipant]

Hi Terry
Yes they are the same thing,I use that reference,as to me it is a biopsy because it looks at cells in the bone marrow,and it is the one test they can confirm myeloma and the only way of telling what is going on inside the bones.
I agree failure is not an option,it,s important to be positive.Eve

[eveParticipant]

Hi Mari
How is Steve getting on with the Velcade!!!!!!!

[MariParticipant]

Hello all,

Thank you all so much for all the supportive messages of hope. We saw the consultant yesterday and we are waiting for the letter to tell us when the velcade will start, proabably next week I assume, surely before Christmas. We both feel we want to get on with it now as the myeloma is rampaging again. Steve has got another cold with a very nasty cough and is feeling pretty low generally. He suffered with a lot of anxiety and fatigue with the CDT and i think he is dreading this next phase of the treatment. I think it is also hitting home that with the failure of his SCT, his time here has become shorter. He is worried about being able to work and how we will manage financially, and worst of all he is planning for the future. We both know we need to find a way to live with this without it breathing down our necks every day. All you brave people out there do this all the time and give us such a great example to follow. I really value being able to come to this site to share how I am feeling and to draw from your strength.

Thank you so much,

Love Mari xx

[MariParticipant]

Hello John,

It is a long time since you wrote this post and i was very glad of your advice. Steve is coming to the second week of his velcade and is doing well so far. I was just wondering about what you said about your wife's treatment. You say she has had Velcade for a year, I had thought that only a few cycles of velcade were given. Does she receive treatment privately, are you paying for this treatment? I hope you dont think me really rude in asking these questions. Velcade does seem to be very good at keeping Myeloma at bay, and although Stephen does respond well to these therapies, the myeloma returns very quickly. I was thinking it might be helpful to keep the velcade up to keep it from returning. No doubt I am getting ahead of myself but we must always have hope.

I hope you get this message, such a long time after our original posting. I do hope your wife is doing well and continues to do well,

Love Mari x

[SueMParticipant]

Hi John

I would love to know too how you managed to obtain a year please
Im in cycle7 of what i thought maximum allowed care of NICE was 8 cycles only ,my paraprotein plateaued and has since regained a few 20% drops but is still 10 g/l
I can't tolerate the full 1/3mg dose for each week but need to decide if worth trying for all 1.3 doses cycle 8 if that will be my last cycle.

This is my second course of Velcade,cyclophos and dex as I'm in my first relapse

best wishes
Sue

[SueMParticipant]

Hi John

I would love to know too how you managed to obtain a year please
Im in cycle7 of what i thought maximum allowed care of NICE was 8 cycles only ,my paraprotein plateaued and has since regained a few 20% drops but is still 10 g/l
I can't tolerate the full 1/3mg dose for each week but need to decide if worth trying for all 1.3 doses cycle 8 if that will be my last cycle.

This is my second course of Velcade,cyclophos and dex as I'm in my first relapse

best wishes
Sue

[DaiCroParticipant]

I got through 7 cycles of Velcade and was told I didn't need the 8th because I had been at 0 all round for 2 months…. that was October 3rd… on January 9th I was told that I had relapsed (and that my levels had started rising almost immediately).

I have heard of people getting a good remission from Velcade but it seems it only worked for me while I was on it but everyone is different… and there was someone on here recently who was 2.5 years and still going strong… lucky b*gg*r 🙂

10 months from my SCT… 6 weeks from Velcade… I hope that Rev & Dex (or R+D+Carfilzomib – if I am fortunate to be accepted on the trial) manages a little beter. 😉

Good luck…

Dai.

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