[tishwishParticipant]

Hi
Peter has now completed all 8 cycles of his Velcade treatment and we await the final result. His last PP level was 8.6 so only expect to get to about 8 for his final level.The doctor was very non committal when we last saw him as to what he was thinking etc. At the moment he is suffering from the dreaded steroid effect plus a nasty dose of a sickness bug and is presently in bed sleeping. Next apt is October 9th. Peter now needs a period of time to recoup his energy and a sense of normality again

Love Trish

[DaiCroParticipant]

Hi Trish,

Was this Velcade treatment supposed to be a pre-cursor for a SCT? If not was it supposed to be a stand-alone treatment where Peter could grab a period of remission to, as you put it;

[quote]recoup his energy and a sense of normality again[/quote]

Velcade is not known for its bounty of giving a long remission… 6 months to 1 year is the norm from what I have seen on here over the past 4 years or so. Why is your consultant being so 'noncommittal'? Has he mentioned the next step at any time during the past 8 Cycles? Perhaps you need to press a few buttons on October the 9th… something has got to give in terms of short/long term plans.:-)

I wish you and Peter all the best in whatever comes next… I imagine it will be Revlimid if SCT's are not in the picture.8-)

Regards

Dai.

[tishwishParticipant]

Hello Dai.

Thank you for your reply. This was stand alone treatment. Peter had SCT in Dec 2011 but then fell into relapse in January of this year, so only a short term result from that treatment. The consultant said that a 2nd SCT is out of the question because Peter only got a small "remission" period from the 1st. Peter has stem cells in storage but they are now useless to him or anyone else apparently.
It was said at the beginning of his Velcade treatment that they might run more cycles of Velcade and funding was sought for this, this now does not seem to be going to happen and the doc said that the cycle 8 was the last cycle in this treatment run. Peter is exhausted at the moment and he needs to gain some strength before whatever comes next is to start.
We have a list of questions for the next appt. Our daughter Vicki,always comes with us to the important meetings with the doc, she is an industrial chemist and is used to standing up doing presentations etc so a doctor does not phase her at all until she gets the answers we all need. We do believe that Revlimid will be the next treatment.
I got the impression from the doc that he knew the treatment had not worked brilliantly but was waiting till cycle 8 was done and the results were in. Think the docs course of action will be to watch and wait n see how the little "buggers" grow again and Peter's PP's rise.

Love Trish

[eveParticipant]

Hi Trish

With Peter having to come off treatment for the hernia,did they not think about extra cycles because just having a hernia operation knocks the body,s immune system!!!
What are his blood readings at the moment,with him having a nasty cold!!!

As Dai said Revilimide usually next,unless he had that first!!! If that makes sense to you..

Hope thing improve soon,but watch out for infection,I found out the other day when nuets are very low,do not give paracetamol ,as it mask infections like Dex,you learn something new every day with this disease . Love Eve

[PerkymiteParticipant]

Hi Trish, Dai and Eve have answered your questions but I thought you might like to know of my experience on Velcade.

I only lasted 4 cycles. I had severe Peripheral Neuropathy in both legs. My PPs had come down to 8:00 but they were on the way up again going up to 8.4 when I saw the Consultant. He pulled me straight off Velcade. I am still suffering with PN in both legs and it looks like it will be a long haul to get rid of it.

I am now due to start Revlimid and Dex on the 4th Oct. I am not looking forward to the Dex. From what I gather Revlimid is quite a mild drug and has only a few side affects, At least that is what I am being told 🙂 . I am keeping my fingers crossed that it will give me some more time, I still have my Family tree to finish plus scanning in 70 years of photographs into my computer and lastly I have not quite finished my Coffin 😀

I am awake at the moment, 4:44 a.m., because I just cannot sleep following the death of my Sister-In-Law yesterday at 6:00p.m. She died quite suddenly from an undiscovered cancer. My wife and I were with her when she died and it was very peaceful. She was like a big sister to me and I loved her as such. The coming days will be so hard for my wife.

Kindest regards – vasbyte

David

[mhnevillParticipant]

Hi Trish

Do hope that Peter is coming round after his infection and that you have a positive Consultation visit in October.

All best wishes.

Mavis

[mhnevillParticipant]

Hi David

So sorry to hear about your sister in law. Yes, it is going to be hard for your wife coping with the unexpected loss of her sister and worrying about you.

I do hope the Revlimid comes on stream soon for you and is extremely effective.

Keep strong.

Mavis x

[EvaParticipant]

Dear David,
Very sorry about your sister in law.
I've beat you to the Revlimid by one week. I'm not looking forward to four lots of 20mg of steroids – a three day break and then four more lots. I behave ok on the steroids but have dreadful withdrawal probs every time. I'm also on Cyclophosphamide which has a tendency to create nausea.
I'm not crafting a coffin like you, but the least I can do is clean up my house a bit and sort out all my inheritance issues. Easier said than done. However I'm grateful for each extension and if the Rev works I might be eligible for another transplant.
Best,
Eva

[tishwishParticipant]

Thank you everyone for your replies. Dai and Eva I hope the the Revlimid works for you. I hope the the PN eases. Peter has a little PN but suffers badly from cramp in his feet when he is in bed. He also has a severe pain on the top of his foot, this is usually triggered from sitting in the car. It is very painful when he has to get out and start to walk. Peter's bug has got worse and we had to have the GP today. This was after discussion with the hospital and they understandably decided that although they thought that Peter needed to be in hospital, they did not want the bug in the hospital. GP came and did thorough examination and decided that apart from the bug he was ok. Got to increase the fluid intake and take a different anti sickness tablet.
Hoping that he soon turns a corner

Love Trish xx

[sanParticipant]

Hello David so sorry to hear about your sister in law an awful shock for you both, love to you and your dear Wife at this difficult time San x

[tomParticipant]

Hi Trish

Sorry it's been a bit rough for David but as it's been all said above I just want to wish Peter a speedy recovery

Tom onwards and upwards xx

[Author]

Posts