[PerkymiteParticipant]

Hi All. Got a real shock on Fridays Pre-assessment meeting.

My Myeloma had been going down, last measurements 8.9 to 8.1 (started at 17.9), so I went to the meeting expecting to hear the Consultant say, "signed off for cycle 5, PP's down again." Instead, after discussing the discomfort I get in my legs and feet said, "I am pulling you off Velcade straight away, you are showing signs that Velcade is damaging your legs and feet and that is not good at all. Plus, your pp has gone up a little 8.1 to 8.4.

I felt quite numb for awhile!

I am now on observation only and when/if the PP's start to increase I will go onto 3rd line treatment.

Bit of a bummer that I was hoping for at least 6 months reemission with Velcade but apparently it is not for me. Next appointment 6 weeks.

The good news – He cleared me to go to France end of August. Hi ho, Hi ho it is off ……………………:-D

Kindest regards – vasbyte

David

[dickbParticipant]

Bit of a bummer about being pulled off Velcade but that's MM for you, never know what is going to happen next. At least you get a proper summer break, time to relax (a bit), refresh and then back to the battle. Have a good time.

Richard

[eveParticipant]

Hi David

That must have come as a bit of a shock,did you ask him to explain in more detail,!! Are you starting to suffer with PN,as its not unusual.
I take it you first treatment was CDT,and he has just taken you off Velcade.CDV???

If you are going on Revidimide ,combination CDR it is known to cause DVT plus thrombotic problems,Slims just had a thrombotic clot removed after his foot turned a nice shade of blue and freezing cold,although he was taking Claxane preventive does of 40. ,and that was after 1 cycle,he is now back on Revilidimide combo CDR,with Claxane. Injections of 100m,so it does seem a strange thing for your doctor to do.

I would be asking questions as it limits your drug availability for future use?? Some times it's about the cost of the drugs,I know that after having a course of Revilidimide ,a maintenance of Revilidimide is next step until it stops working,were Velcade is a course with no maintenance after.

Any way all this is food for thought!!! You lock the Myeloma in a cupboard and have a wonderful holiday. Love Eve

[PerkymiteParticipant]

Not expecting the blood reading I was caught totally unawares. It was like my first diagnosis in 2009 all over again.

The more I think about it the more I am convinced he had already decided, because of the increased PP reading, that he was going to take me off Velcade. The fact that I talked about my uncomfortable legs from the knee down just added weight to his decision for him.

I do not think finance was in the equation. Although I have always believed Velcade was the cheaper of the two drugs, anyone know?

kindest regards – vasbyte

David

[jeapal23Participant]

Sorry to hear you have been taken off tit. You were slightly in front off my husband he is on the fourth cycle. He is getting odd pains all over. In his Legs and back mainly. They put him on a morphine based painkiller can't remember the name but he is stil complaining. I really think the heat is not helping, we re back at the hospital on Thursday wait see what they say then.

Do you have holiday insurance or do go with out any to France.

[eveParticipant]

David you were saying you walked 4miles,I do not know what pain releave you are on,but for your pp to rise by 0.30 is nothing.

May be its just me questioning things,to me !! I would have to question why,as Velcade was getting PP down,Revidimide is known to cause problems with legs,and this will be your next treatment.

Why not ring Ellen she might be able to give you some sound advice.Eve

[VickiParticipant]

Oh David

Really sorry to hear that! That wasn't much of an increase to bring you off? What exact damage was there to happen to your legs, clots etc?

There is bound to be something else that they can do equally good, so in the meantime Bon voyage and enjoy France!

Vicki and Colin x

[DaiCroParticipant]

Hi David,

I have read and re-read your initial post and have wanted to reply… but I kept on going back to the written details. Okay, I think I am ready to reply. You always explain things lucidly and you always get your facts right, so I will assume and take as read that all we need to know is in that initial post, plus the explanation in response to others posts in your 2nd reply.:-)

We are told, with much evidence on here as well as in official MUK literature, that relapse is officially called after 3 consecutive monthly consults that show proof of rising PP's or Kappa Light Chains. Your last 3 readings have been 8.9 + 8.1 + 8.4. Surely the 8.4 should be reading 1 of 3. Even if the 2nd reading showed another rise (say 8.4 to 9.0) then the consultant should start preparing you for coming off Velcade and to start looking at the third line treatment (Revlimid according to NICE guidelines). Pulling you off Velcade after such an insignificant rise of 0.3 seems non-sensical… however and whichever way you look at it. :-/

So we must look at his concern at the going ons with your legs. You haven;t told us how bad they have got… I presume we are talking about PN here? PN is a common side-effect with Velcade. Velcade worked wonderfully well for me first time round, in the Summer of 2011, terminating a secondary tumour (in a nasty place for treating) in the 1st Cycle and bringing my Light Chains down to 0 (zero) by Cycle 3. They kept them at zero until Cycle 6… where they signed me off and sent me out into the wide world… not knowing that I would be back within 6 weeks… ah well.;-)

But I paid the price through my PN progression, which I was told would gradually get better… it never did… but it did take the whole 6 Cycles to develop and it was on top of the PN inherited from my CDT treatment… where they blamed the Thalidomide. I am now on Cycle 3 of Velcade 2nd time around and after an initial agreed regime of 2 Cycles of: Wk 1 = V1 + V2 – Wk 2 V1 + V2 followed by a rest week, we switched to single Infusions on each Monday for 4 weeks followed by a weeks rest… I had my final infusion of C3 yesterday.:-D

My PN is growing again, especially in my hands… which has more or less finished my guitar playing days, excepting the most basic strums. I have been told that the PN progression is not so bad, even imperceptible, on the once a week regime… but that is usually accompanied by a reduction in the Velcade dosage… mine stays the same at full dose of 2.75. I have to balance the full dose against the extra time that the new 5 week regime buys me and all in all I'll settle for the extra time thank you very much.8-)

So David… unless you have developed full-blown PN that is threatening your mobility and the flexibility and/or dexterity in you hands… I would seriously question your Consultant's decision, even to the point of a 2nd opinion.:-|

One last thing… has your Consultant mentioned any correlation between Velcade, its side-effects, especially the PN… and your Prostate condition?

My 2p's worth.

Dai.

[mhnevillParticipant]

Hi David

So sorry to hear your latest news. Hope you can get some straight answers. Has anyone suggested yo try your initial treatment again? Iam sure I read somewhere that a repeat was a possibility. It might be better than rushing to Revlamid.

Glad you are getting your holiday in it is these things that count. Have a great time and try and forget the dreaded MM for a bit.

Love

Mavis x

[PerkymiteParticipant]

Well, you bunch have certainly given me lots to think about. I have an appointment with my own Doctor on the 29th July and am going to take up the issues with him, he is a personal friend. He is away sailing in the Med until then.

At the moment I am slightly puzzled by what has happened and quite unsure of what action to take, as I said earlier it is like your first diagnoses. The Consultant that pulled me off Velcade was the one that fought for me to get a SCT when other Consultant had ruled me out. So I have always considered him especially to be on "my side" so to speak, which only adds to my confusion!

My legs started to become extremely uncomfortable, below the knees. This was not all the time but getting more frequent. The skin did not seem to be attached and felt lose. I could not lay in our easy arm chairs because of the pressure on the back of the legs. It felt real odd to touch added to that I had started to get PN in my feet and just a light tingling in the hands. My feet were not painful but I knew the pn was there, I could still walk ok.

Yes I will be taking out insurance for my holiday, but after the 30th. First I have a Prostate Consultancy this Friday, which I hope will clear me to go. Then I speak to my own Doctor and get a clear to go plus my list of items I must ensure I declare. Insurance Company's will only insure from the date the holiday starts or just before anyway so I have time the ferry is 23rd August.

Thank you guys – you are great bunch to have on my side.

Kindest regards – vasbyte

David

p.s I was having a laugh and a joke with the Staff Nurse that treats me and she made the comment that the Consultants considered that my blood reading had all flattened out and that there was nothing further to be gained by more Velcade plus the danger of increasing the damage to my legs.

[tomParticipant]

Hi David

Well am sorry you have been taken of your treatment 🙁 I hope the next round of treatment is good for you.

Vasbite and Onwards and Upwards My Friend

Tom x

[PerkymiteParticipant]

Hi Dai, I forgot to answer your question re prostate correlation.

When I have asked about the affects of treatment for Myeloma on Prostate treatment they said there is no cross over affects and the treatments do not affect each other and can be done side by side.

One thing I have noticed is the Consultants stick rigidly to their area of expertise. Haematology does not answer questions re Prostate or vice versa. What they do is suggest you direct your question to a. your Doctor or b. the Prostate consultant.

Kindest regards – vasbyte

David
(to fight the darkness do not draw a sword – light a candle) – anon.

[andygParticipant]

Hi David

Sorry to hear you've been pulled off Velcade. I only had 2 cycles of Velcade before I was pulled off it. From what I recall being told at the time was that Velcade worked quickly and effectively and if there was no major response in the first couple of cycles it wouldn't work. You managed to have 4 cycles but it sounds like the velcade had stalled in its job. Plus you were getting bad side effects too. I don't know the cost of Velcade but I guess your consultant was following NICE guidelines.
I hope you get the all from the prostrate consultant for your trip to France. Bon voyage.

Every day is a gift

Andy

[PerkymiteParticipant]

Thanks Andy, Yes, the more I think about it the more I think you are right. The Consultant I saw is a real nice guy and having stood up for me in the SCT argument I just cannot believe he would just take me off for no good reason. He probably explained it all too me but I was just not listening properly I am sure. As I say I will have a chat to my Doc when he returns from holiday.

I would add to your signature "every day is a gift, make sure you open it.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

If you look at the time of my last posts yesterday you will appreciated that I had a sleepless night.

I think my Consultant was right to pull me off Velcade my legs gave me hell last night. They feel like they have done a 100 mile run. They ache terribly and I notice I am getting cramps, I have managed to pick it up before it started and moved my legs in time so far. I have "spongy feet" again as well.

Ahh well, off to Teignmouth today and will catch up my sleep on the beech!

Kindest regards – vasbyte

David

[Author]

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