[VickiParticipant]

Firstly hi all. I’m not getting on too well with this new forum. Just checkin in hoping that you are all well. Hi to Andy G, Ali, How’s helen, anyone heard from onwards and upwards Tom? I was also thinking how is David from Taunton and I think biker chris was from bristol how are you all doing?how are you Maureen? How is Ian doing? How’s frank doing Jean? How are you Mavis?

Colin is on 3rd cycle of velcade. He seems to be either totally hyper on the steroids of totally knackered and asleep like he hasn’t slept for a month. Is that normal? We have only had one set of results and the light chains went down by 1000 but we don’t know if that’s good or not as it normally goes, but what’s normal. It’s really strange Colin was really generally good over Christmas. We stayed up til gone 2am on New Years eve…..that’s unknown for us these days. This third cycle which he’s now on he’s like a washed out rag.

Any information or experiences of others would be good to hear. Best wishes all and stay healthy and wll

Vicki and Colin x

[bandityogaParticipant]

Hi Vicki

Good to hear from you again. Ian was on velcade for 3 cycles. His FLC came down on the 1st cycle but started rising again on 2nd and 3rd cycle. He was very grumpy and impatient when on dex and used to fall asleep in the afternoon. His feet and ankles were very swollen too. He is now just finished his 6th cycle of revlimid and dex. After 4th cycle his FLC came down to 154 but last results showed FLC at 358. He did have an infection and this has happened before so I hope it was a blip. We get latest results on Monday, fingers crossed

There is a myeloma support group on Facebook and Tom posts regularly on there. Get on Facebook and request to join the group.

What are Colin’s FLC at now?

Take care and hope all goes well.

Love Maureen x

[VickiParticipant]

Hi all

I lost the first post so trying again. Velcade not working, light chains up from 4 to 7000. Not sure what happens next but it’s rubbish. We have to wait for next weeks treatment appointment, turn up for it, won’t have it and then wait for a consultation appointment to see what happens next.

It’s so hard. It’s the first time we’ve heard treatment isn’t working. I don’t know what we do next. We’ve had evening meal talking about anything but mm but really that’s all we really want to talk about. Who knows. I thought velcade was supposed to be the new promising treatment. Just goes to show how individual this condition is

Best wishes to all
Vicki and Colin x

[bandityogaParticipant]

Vicki

I also went into meltdown when we were told that velcade wasn’t working. I wanted them to add cyclophosphamide and even went for a second opinion but we were advised to move on to revlimid. It is working at the moment, I don’t know if Colin has had revlimid. There are more treatments available. Andy is having a lot of success with pomalidomide .

I can’t understand how each individual is different but they all receive standard treatment.

Stay positive

Maureen x

[dickbParticipant]

Hi Vicki,

I had Velcade with Cyclophosphomide last year but it only reduced my IgG down to 52 before they decided to stop. It didn’t really work for me and Revlimid was not seen as an option because after having just one course of PAD as the initial chemo, my Liver enzymes went through the roof. The medics were very concerned about Liver damage being caused by the Revlimid and felt the only option really open to them was SCT even with a high IgG level. I still have an IgG level of 23 and have done for the last year. Neither the Velcade nor the SCT acheived the holy grail of total remission but I’m managing fine.

As you say the condition is so individual but while they are still experimenting with new drugs and/or combinations there is still hope. We all know it will come back again someday but there’s nothing we can do about it so far. That doesn’t mean it will always be like that.

Richard

[andygParticipant]

Hi Vicki.

Velcade never worked for me. I was on PAD and it never worked but there again nothing worked for me till I was put on Revilimid and that only seemed to work once Cyclophosomide was added. I had 22 cycles all together before I was switched to Pomalidomide which I’ve just started my 14th cycle of. My PPs were 6.4 at my last blood test.

Velcade a new treatment? I was on it in 2012 lol! I think it’s like marmite it either works and works well or it fails miserably.

Sorry you’re having to cope with the failure of a treatment Vicki but don’t give up hope there is still other treatments to try. We were told in 2012 to go out and do what we can whilst we can with the clear implication I didn’t have long left. Well I’m still here and doing the best I’ve done since diagnosis in 2011.

Still living my life everyday as it comes.

I hope Colin gets a treatment that suits him soon.

 

Every day is a gift.

Andy xx

• This reply was modified 9 years, 9 months ago by  andyg.

[VickiParticipant]

Andy

You were the first person I thought of when Colin was told it wasn’t working. You are the example I use. There’s always hope and good on you with the pp down to 6.5. That’s great! Any chance of a transplant? Now we’ve got over the initial shock we are itching to know what happens next. Ironically Colin is really well today except the tiredness…..still we got to keep going. The worst thing is that we don’t get all of the information and seem to have to wait, we don’t know when we will know what happens next. Still we have no choice. As you say keep positive and enjoy it day. Hope steph is ok too 🙂

Vicki and Colin x

[MrsLParticipant]

Vicky,

I am on VCD following first relapse in November. (First treatment had been RCD on the Myeloma XI trial, then SCT in May.) Unfortunately I got an infection during my first cycle so it had to be postponed until I was over the infection. I am now just finishing the second cycle. Have been told they won’t know how well it is working until end third cycle. The side effects haven’t been too bad, not being able to sleep after the dex is probably the worst, I just try rest during the day to make up. My other big problem is that my IgM lambda Myeloma is causing a very low platelet count, it has been down to 11. A velcade side effect is that it can lower the platelet count so I have had to have one or two transfusions each week to get the count over 30 so I can have the velcade. Hopefully once the VCD starts to work it will stop the Myeloma lowering the platelet count and the transfusions can stop. I believe if you have too many you can build up antibodies against them. Anyone else come across this problem?

Linda

• This reply was modified 9 years, 9 months ago by  MrsL.

[andygParticipant]

Hi Vicki.

I have been referred to Prof. Jackson at Newcastle Freeman hospital to see if an Auto SCT is now an option. I’m not counting on it but will wait and see what the Prof. says. A SCT could buy me more time for new treatments to come along since I’m nearly at the end of the drugs list. I’m not sure if my bone marrow has recovered enough to be able to provide enough stem cells. Time will tell.

It seems to be a common theme on here about the lack of information. There’s nothing worse than being left in the dark. I must say I always know what is in store for me. Maybe that’s down to my consultant being the same doctor I see all the time. Or it could be that I’m such a strange case that I’m her pet project lol.

Hopefully Colin will soon be on his next leg of the myeloma journey and on his way to remission.

Steph is doing ok thanks Vicki though as you well know this Myeloma gig is just as hard or maybe even harder on carers than on us that have to take the medicine.

Every day is a gift.

Don’t spoil today by worrying about tomorrow.

Andy xx

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