[hilitliParticipant]

Hello

My Mom is 73, diagnosed multiple myeloma in 2014.

She was treated with: V.A.D + steroid+ radiation spinal column )D2 after that she got Thalidomide + steroid for 5 years and aredia for 3 years. She suffers from neuropathy. Osteoporosis and Hypothyroidism. After that remission for 5 years. Last month they did blood test & CT pet and found that multiple myeloma is relapsed. She must start treatment immediately. The want to give her Velcade injections in two weeks – 4 injections. I would like your advise:

1. do you think Velcade is the right one for her? We heard there are new treatments: Kyprolis, Carfilzomibe do you have any idea what we need to ask the doctors?

2. any one has a similar story that can tell us some tips?

thank you in advanced

Nana

• This topic was modified 10 years, 9 months ago by  webteam.

[PerkymiteParticipant]

Hi Hilitli,

I am sorry to hear about your Mum, it sounds as if she has really gone through the mill. I can only give you my experience with Velcade. I relapsed and was given Velcade as the next (2nd line) treatment. Unfortunately it did not suit me at all and I had very bad PN in my legs so after 3 doses I was taken off I am now on Revlimide and that has reduced my Para Proteins to “not detectable”. This is the first time that has happened in 5 years of treatment.

Personally I would go with the Consultant’s recommendation but watch out for PN and report it as soon as you can.

I wish you and your mum the very best.

Kindest regards – Vasbyte

David.

[hilitliParticipant]

Thank you very much David. Wishing you the best

 

[tomParticipant]

Hi Hilitli

Sorry to hear about your Mom,I can’t add to this although I am on the Velcade injection once per week but have just finished my first four week cycle do am sure you understand for me IRS early day.

Good luck to your Mum on her long journey, I hope it’s a smooth one.

Tom onwards and upwards x

[hilitliParticipant]

Hello Friend,

Unfortunately, after 8 weeks of Velcade, the neuropathy become very bad to me mom’s legs and the doctor must stop the treatment.

She move to Revlimid, 50 milligram for 2 month (with few days off in between). My mom fells very bad with Revlimid, she says it is even bad than Thalidomide (the side effects).

1) Do you have any experience with Revlimid?  do you have any experience with smaller dose of peel (25 milligram)? her doctor believe in a very aggressive treatment and my mom feels very bad

2) Do you have any experience with Kyprolis ,Carfilzomib / Pomalidomide?

Any information will be helpful,

Thank you very much friend, wish you all good health

Nana

[Anonymous]

<div class=”caption” style=”font-size: 13px;”><i>You should take a reasonable amount of time to think about all of the choices. Getting a second opinion can provide more information and help you feel more confident about the chosen treatment plan. Some insurance companies require a second opinion before they will agree to pay for certain treatments.  (source: http://www.myelomacrowd.org)

[Rosiemonkey31Participant]

Hi sorry to barge in on this conversation I wasn’t sure how to start a new thread. my dad has just relapse for the second time. His first chemo was a trial lenaolidamide and cyclophosphamide, second chemo was velcade. The consultant has said there are no other treatment options but I see on here that there seem to be all sorts of combination of drugs and new drugs available. He’s in hospital as his arm and collar bones have broken due to myeloma. I suppose my questions are how has dad got into this state and are there other drug options and is dad just receiving very poor care? We’ve been trying for days to get hold of his consultant. It’s so frustrating that there is no one we are able to talk to.

[CarolsymonsParticipant]

Hi

Many times people on this and other forums suggest getting another opinion and from what you have written, I think you definitely need to be referred elsewhere. I don’t understand how your dad has new broken bones if he is currently undergoing treatment. As you have seen
there are many treatment options available, with some people being on a third or fourth line of treatment.

Carol

• This reply was modified 10 years, 5 months ago by  Carolsymons.

[Rosiemonkey31Participant]

Thank you Carol for your response. Yes from what I have read on here I have gathered information which i had no idea about and think we need to get a second opinion and have him transferred to a different hospital ASAP. I think we have been too reliant upon the opinion of one consultant but you trust these people and assume they know what is best. Poor Dad he is on the elective list to have his leg pinned (as that is about to break too) it should have been done on Monday but has been cancelled and again today fingers crossed for tomorrow. However this will only leave him with one functioning limb. I shall try to get him transferred to Nottingham City hospital (near me) if I can possibly speak to the consultant there and fingers crossed trying to stay positive!

[rebeccaRParticipant]

Hi Rachel. Glad to hear you are transferring him to Nottingham – this is an excellent hospital for MM – I don’t go there but have read of others on here who do and get access to really good treatment and trials – think Prof Jackson? is the man to see. I went to Leeds for a second opinion and treatment there but Nottingham was on my list but further to travel. Even I know following velcade tends to come thalidomide and revlimid and other new things, or combinations of drugs etc. Your consultant or GP can refer you, my consultant was happy to send me. I would phone Ellen on the Helpline and arm yourself with knowledge of what can/should be done and how to get it done quickly. Good luck and glad to see you’re taking control. It is shame that you have to fight both MM and inadequate care but I’m sure you’ll get there. Stay strong and focussed.

Rebecca

[VickiParticipant]

Hi Rachel

Just caught your question…..yes yes yes get another opinion, there are lots of options talked about. Don’t take no for an answer. Some might not be avaialb win Europe yet but leave no stone unturned. I don’t understand how they can say there are only two options

Go for it and best of luck. Hope your dad is feeling a little better

Vicki and Colin x

[Rosiemonkey31Participant]

Hi, thanks for the responses. Sadly my Dad’s fight is nearing it’s end, we were told last Thursday that he has at most 6 months. I guess he has a particularly virulent form of MM. Thanks you for your support. Keep fighting and keep enjoying life. Best wishes.

[mrsgooseParticipant]

Hi All

Sorry to hear sorry to hear of all the problems. I relapsed after 6 years and had my first Velcade injection today, How long befor side effects are noticed? I had a really bad reaction to thalidomide last time so hope it’s not the same.

Marg

 

[tomParticipant]

Hi Marge

 

well I have been on the Velcad for 5 months now, it stopped working on month three so i have had Cyclophosamide to the mix side effects ?? am tired and weary more so as the other one was added,apart from that Not much else as yet, to be fair its ben kind to me 🙂

Good Luck with it

 

Tom Onwards and Upwards xx

[mhnevillParticipant]

Hi Rachel

So sorry to hear how poorly your a Dad is and that you have had such problems getting information from your Consultant. It seems that now the priority is to make sure your adad is as pain free as possible. Is there a pain specialist nurse you could talk to. Also, is the. Myeloma Nurse Specialist who could give you support.

Lots of love.

Mavis x

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