[tishwishParticipant]

Hello

Peter saw the consultant on Wednesday and was told that he has started to relapse after a very short period from his SCT, 13months,this was devasting news to us as a family. The consultant immediatly told us that a 2nd SCT would not be done ( Peter has frozen cells ). He said that as Peter had not got a very good remission period from the 1st SCT it would be even less from the 2nd. He said that the treatment would be Velcade, steriods and Thalidomide. However after reading the Velcade info we are confused about this drug…..

is it not a chemo drug????

Peter is due to have his Bone marrow biopsy on 21st Feb followed by the results a week later and we expect to start treatment on 1st May
Any info on Velcade, side effects etc would be welcome.

Many thanks
Trish x

[HelenRParticipant]

Hi Trish,

So sorry you are having to go through this. I'm on my first remission and even already the smallest worry about my results generates huge waves of worry/depression about relapsing so I can only imagine how demoralising it feels, and how confusing to enter a new world of having to make choices.

I think others are better informed but I just wanted to add the little I know as I had velcade as part of my first-round treatment (along with steroids and a chemo drug called doxyrubicin). Velcade is a proteasome inhibitor, so it works in a slightly different way from chemo. It inhibits proteasomes, and I can't for the life of me remember what they are, but I think they send some sort of signal or do something which gets interrupted and hence stops the myeloma cells from living. It has had very good responses relative to the former generation of chemo drugs. Hopefully you can find some info on the Myeloma UK page or other cancer research charity pages – I know I did and was very reassured. I felt really lucky to get it as a first-line treatment (under a clinical study) as normally in the UK it's only available after relapse. It worked very well for me.

I'm not really able to pinpoint any specific side effects linked to velcade rather than the other drugs I had. One thing to ask others about is peripheral neuropathy as some people get that – I didn't. I did have a lot of fatigue, and in later cycles I had vomiting, but I don't know if that was due to the chemo or the velcade.

Best wishes and I hope you get some more information and a good response to treatment.

Helen

[GartocharnParticipant]

My son who lives is Abu Dhabi had a very positive effect with Velcade but recently was at the Royal Marsden for a stem cell harvest but was not sucessfull after 6 days of growth hormone so has gopt to fly back to Abu Dhabi because of this and the next available slot on the machines will be either March or April

[meganjaneParticipant]

Hello Trish and Peter,

I am so sorry to hear about Peter's relapse. My husband Phil had the same treatment as Helen for his first round treatment, dex-dox-Velcade. Phil had a very good response on this treatment and had very few side effects except for the peripheral neuropathy that Helen has mentioned. Peripheral neuropathy is a known side effect of Velcade but it does not affect everyone who has Velcade. It can affect the hands and/or feet and for some people it can also creep into their arms and legs. It causes a feeling of pins and needles or a burning sensation or a numbness/cold feeling. Phil has peripheral neuropathy in his feet that causes a constant burning sensation. If Peter experiences any of these symptoms make sure you let the doctors and nurses know right away as they can reduce the dosage of the Velcade to try and prevent the symptoms getting worse. There is also medication that can be taken to help with the symptoms if neuropathy does occur. If you use the search function on this forum and type in Velcade you will find some threads discussing the side effects.

Good luck with the new treatment.

Megan

[JentayParticipant]

So sorry to hear that the SCT failed after a relatively short time. I had Velcade plus dex about 3+ years ago and it was extremely effective. I had 6 cycles and it's effects, post treatment, lasted 14 months. I felt a bit tired when I was on it and I did need a blood transfusion at one point but otherwise it was fine. I hope it works well for you too.

I believe Pomalyst (Pomalidomide) has just been passed by the FDA. Let's hope it isn't too long before it's available here as it will be another line of treatment for us all.

Jen

[tomParticipant]

Hi Trish and Peter

So sorry to hear about the SCT failing after such a short time, 13 Months is not long after what Peter had to go through.

BUT as they sat SCT might be a thing of the past and MM will be treated by just drugs, I have not been on Velcad but by all accounts its pretty Good 😀

Good Luck to you both as you Turn the Corner and go on Another road to remission.

Love Tom "Onwards and Upwards" xx

[MothasParticipant]

Hi Trish, sorry to hear your news.

I'm taking velcade at the moment. I've had 3 injections along with Dex and Adriamycin as part of my PAD treatment.

The first couple of weeks, I had no side effects whatsoever. This week I notice a mild neuropathy (tingling in my hands) and I've felt a bit nauseous with headaches the last couple of days. I take domperidone for the nausea which is quite effective.

Velcade is meant to be a very effective treatment. I have one more injection this month and start my second cycle the following week.

[PerkymiteParticipant]

Hi Trish, Sorry to hear about the relapse. I am in the same boat, but my SCT lasted 2 years which was six months longer than predicted (best guess at the time). I have just started relapsing and at the moment it is a gentle curve up, I am now on 6.7 pp. You never know it may just decide to go down, who knows for sure with this awful decease. I go for my next appointment on the 22 Feb when I will learn more.

I am very much getting the impression that Velcade, with different drug additions, is the second line of treatment for the general run of the mill sufferers. I already have some PN from my first bout of Chemo some years ago so have a question mark over it at the moment. But we shall see on the 22nd.

Kindest regards ? vasbyte

David

[BADGERParticipant]

Hello Trish

I am on my first relapse only had CDT before now on Velcade seems to be doing ok not many side effects it has a great reputation as a drug so i hope Peter does really well on it
Love Jo x

[tishwishParticipant]

Hello everyone.

Thank you for the replies to has helped us. We are compiling a list of questions to ask the consultant about velcade. We have got info from the myeloma uk website and read it too. Its the wait that seems the worst for us. Will let you know more when we can.
Many thanks
Trish xx

[ozzyParticipant]

Hiya Trish & Peter
I also relapsed in January, my sct lasted nearly 2 years. I am now on Velcade and dex. I had 2 injections x 2 weeks and am now on a 1 week break. I had a high temp 38.7 on the 2nd injection and was admitted to hospital. I have had bad constipation had to take meds and then had the reverse last weekend with added sickness(losing 7lb). I now have a strange sensation in my hands and feet and they have reduced me down to one treatment this week. I think I have been unlucky and hopefully now things have settled down.The consultant thinks highly of this treatment I will find out thurs if it has started to attack my myeloma. Good luck on your journey and let us know if you have any side effects.
Good health
Ozzy

[VickiParticipant]

Trish

Just wanted to say sorry to hear of the relapse…..I do believe this velcade is a very positive drug. Still I can understand how fed up you both must feel. One year isn't long enough 🙁

Thoughts are with you, on a positive note these drugs are getting better and better!

Vicki and Colin x

[KeithH17Participant]

Hi Trish…just caught your post about Peter's relapse. I had a second SCT which only lasted 7,months so it's pretty much the norm on a second transplant. As for Velcade I had all 8 cycles and was in remission after the first 2 but the subsequent SCT flopped within 7,months. Side effects were few and far between and I think this is because Velcade is a proteasome inhibitor and is better at singling out the mm cells for attack rather than hitting everything in the way Chemo drugs do. These are the future going forward.Doctors should not be treating their patients with highly toxic drugs when much better treatments are available albeit more expensive. I have had 4 relapses and on my 5th treatment at the moment,2 of them PI's and they have been the most effective both in side effects and actual success rate. I've been Neutropenic on and off (mainly on) for 3,months and this is all down to Chemotherapy treatment. All these treaments have a common denominator,they lower the WBC count causing the Neuts to fall. I only got out of hospital yesterday spending a week there because of yet another infection.

And yes Helen you have it spot on with regards Velcade and this is why we must go down the PI route.

Best of luck Peter/Trish

Keith.

[pinkParticipant]

Hello, my husband has been treated for MM, and has been given Valcade from the begining, it has worked very well, it was given along side thaliamide and then revlamid, he went into remission after being diagnosed and treated just after 4 months, he was previously at stage 3 with this cancer,so I would say that Velcade seems to be a good drug, however stem cell collection has not been achieved on the first try, fingers crossed for the second time round

[tishwishParticipant]

Hello everyone

Many thanks for your replies. We have done a bit of research and are awaiting a visit from Macmillan nurse to talk it through with us. Bone marrow biopsy is on Thurs and results a week after.

Many thanks
Trish xx

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