[dickbParticipant]

Well, after SCT in January 2014 and the disappointment of not even achieving a remission because my IgG stayed above the 16, I have been told today that treatment will recommence. I’ve been treatment free since the SCT because the IgG stayed stable at 24 but last month they had increased to 34. After this months blood test showed no change at 34 the medics have decided to commence with Revlimid and Dexy. Am I peed off or what. I am really looking forward to the Dexy fuelled nights again. Just when we were starting to have something close to a normal life again this happens.

Rant over, I see my Consultant next Tuesday to go through everything and begin the treatment. I still intend to collect my pension in 15 years time.

Richard

[dickbParticipant]

Hi Jane,

I had dexy last time with Revlimid, that was 20g for 2 days, a day off then 2 more days. My consultant is talking about 40mg just once a week but I have alrteady tried to have it reduced to 20mg, he says he may do after a few weeks. My wife is really dreading it and has warned me not to bite our daughter’s head off.

I live in Germany so I don’t know if they use prednisolone here, At least there isn’t any Cyclphosphomide yet so I wont have hours with a drip attached.

[dickbParticipant]

Oops! meant to say I had dexy with Velcade. I’ve not even started on the stuff and it’s already causing confusion and anxiety.

[rebeccaRParticipant]

Hi Richard, sorry to hear you are back on treatment that’s a real bummer (understatement). I had my SCT Dec 2014 just before you and dread the day of treatment again after being treatment free. I know the SCT didn’t do what it should for you but statistically only 50% of people get more than 18 months remission from Sct- not a fact I focussed on, or even acknowledged, at the time but it sure is a focus now! My initial tratement was 40mg of dex once a week with a velcade jab – no breaks in treatment for 8 months. I think the 40mg just once a week you won’t find too bad as there is time to recover and enjoy some “free”/normal time before it starts again. Think the weekly option was considered more gentle than how it’s normally done where you have a 1 week break in 4 I think. I found velcade fine and only got really fatigued and some pn at cycle 6 (most do 6 not 8 sycles I think anyway). The worst bit was the injection site would go bright red and feel as tho a red hot iron was on it for a good night afterwards. Had it all on a Tuesday so by Thursday/Friday all was back to normal with me and got some good quality normal time. Best wishes,

Rebecca

[Kazzam2Participant]

Hi Richard,
Hi Richard
So sorry to here this. I too am back on treatment, I have just started my second cycle of Velcade and Dex, I went on the MUK5 trials but got radomised the standard treatment. I know what you mean, peed off, I got 17 months complete remission after SCT, they said they don’t do SCT after first relapse, I have stem cells in storage, but not looking forward to the time I have to use them.

I hope I haven’t cheered you up too much. We just have to soilder on. Good luck with your treatment.

Karen

ps

Hi Jane and Rebecca.

[PhilipandfionaParticipant]

oh crap.

sorry to hear this. as Tom says, onwards and upwards.

[CarolsymonsParticipant]

Richard
What a darn nuisance! I went through transplant around the same time as you but was lucky to have and still maintain a complete remission nearly 15 months later. I do hope the new treatment is tolerable. You know some research seems to indicate that 20mg dex is as effective as the higher dose, but guess you have to listen to your specialist. I used to have a huge drop in blood pressure after the 4 days of dex during CDT and the doctor prescribed a “come down” dose for 3 days after which certainly helped both with the blood pressure and the aches and pains. I guess Velcade will be my next drug when the time comes and I am dreading it. Please don’t bite your daughter’s head off! I was evil on dex according to my husband!
I just thought I was telling it like it was!

Carol

[dickbParticipant]

Hi Carol’

Glad to hear you’re still doing well, have you taking up surfing with your new appreciation of life post SCT or just enjoying some sun?

I need to read up a bit more about Revlimid but apart from a risk of Thrombosis, it seems to be a good option. With Velcade I only had Neuropothy in my feet and just before the SCT it was really bad, over Christmas it dissipated. Strange thing is that now when I get stressed out e.g. Wifey’s giving me a really hard time, I get really bad pain in my feet. It never happened before. As for my wife giving me a hard time, I have to admit it’s deserved. (She reads the forum as well) 🙂

Anyway, I was on 20mg of Dexy with the Velcade before but I think this time they want to hit it hard before it really takes hold. My Consultant says he will consider dropping down to 20mg after a couple of weeks. I am realy looking forward to doing my German Homework at 3AM and then revising for the exam at 04:30 AM. Woe betide my Lecturers if they give me grief!

Richard

[CarolsymonsParticipant]

Hi Richard

I do feel very fortunate to have reached a good remission after transplant and maintained it so far. No surfing for me, in fact nowadays I am very careful about going in if the surf is too rough. There is a salt water lake near here and mostly I swim there….no sharks there either…that’s a bonus!

I haven’t had Velcade yet but do have some numbness in my toes from thalidomide. Weirdly my toes feel worse after I have a shower….strange! But they are not painful so mostly I just ignore them and get on with living. Back to Europe in May for 3 months so looking forward to that. I feel I have to do everything I can now while the dreaded myeloma gremlins sleep.

I do hope your treatment is not too debilitating…your German should improve with the dex nights!

Carol

[bandityogaParticipant]

Hi Richard

Just heard your news and I am sorry to hear you are back on treatment. Are you going back on velcade or revlimid?

Ian hasn’t had his SCT yet as his gum hasn’t healed yet from his teeth extractions. Dentist wants him to wait another 2 to 4 weeks but I’m concerned his FLC will be rising as he is not on any treatment. We see the consultant on Monday so hopefully he will explain what is happening.

I have sympathy for your wife when you are on dex as Ian was very grumpy and impatient. Hope the treatment will be successful.

Maureen

[bandityogaParticipant]

Richard

Sorry didn’t read your post saying you are on revlimid. Ian didn’t have too many side effects.

Maureen

[dickbParticipant]

That’s alright Maureen, The medics tell me that there are not too many side effects and shouldn’t be anything that won’t show up without a blood test. However I’ve found them to be over optimistic here, as if they spend a large chunk of their training on how to reassure the patient. As an example, at my initial diagnosis, my GP said to me that ” there is more chance of finding a specific tree in that forest than you having anything majorly wrong”, the town we live in is on the edge of a forest covering over 1700km sq.

My wife says I was unbearable last time I was on Dex and we are both really dreading it, I’ve just in the last few minutes taken the 40mg for this week. Last time I was 20mg a day, 4 out of 5 days I believe. At least this is a lower dose overall and only once a week. The sleepless nights I can use to study and revise, I have a couple of exams end of June, both in German and my German is still pretty bad so I need the time for revision.

Perhaps you and my wife should exchange email addresses, then you can exchange notes and give each other moral support over living with a monster in the house.

One of the things that the medics want to discuss is an allo SCT. My view is that the initial SCT didn’t really do very much and I think that was because my IgG was still at 36 when they did it. An allo might make sense but I still have enough of my own stemcells in storage for a second SCT and that for me, an allo would be an action of last resort. There doesn’t seem to be any difinitive proof that an SCT, auto or allo actually is the miracle cure. Really it seems to be down to how hard the MM is hit before the SCT and just how good the Stemcell harvest was at filtering out the little MM tumurs.

Now with Ian’s dental work, if he is ready for an SCT but they are delaying it until everything has healed up would they not put him on any form of short term maintenance to prevent the FLC increasing? Surely that would be logical otherwise, all the previous treatment to get him to this stage would be wasted.

Richard

[andygParticipant]

Hi Richard.

Sorry to hear that you’ve had to restart treatment. Hopefully Revlimid and Dex will do the job for you and get your myeloma back to at least being stable. I was on Revilimid for 22 cycles with Dex at 40mg for the first 4 days per cycle. Unfortunately it did nothing till Cyclophosamide was added to the mix. Side effects for me were the usual tiredness and the usual Dex up and downs however Cyclophosamide was a different beast! Nausea, loss of taste and appetite etc however it kept my PPs stable so was worth the effort.

I hope everything goes well.

Every day is a gift.

Andy

[dickbParticipant]

Thanks Andy,

I’ve only been on the treatment since Wednesday and already I have had the extreme tiredness. the warm sweats, diarrhea and constant itching of the scalp. I am not looking forward to the next few weeks. My concentration levels are really low which is a bit of a bugger because I have a possible mock exam tomorrow and lots of homework to do. Looking at the sheet for the Revlimid, all the above are listed as possible side effects. If it gets any worse than it’s an email to my consultant.

[andygParticipant]

Hi Richard,

Your list of side effects reminded me of some I’d forgotten. The sweats that’s Dex! Well it is for me. The loss of the ability to concentrate was a major problem for me and I stopped driving because of it. I wasn’t sure if it was caused by the Revilimid or the Cyclophosamide but as I said I didn’t feel safe driving and found reading books a real challenge. Not a good time for you with exams coming up and homework to do!

Good luck with everything.

Andy.

[Author]

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