Hi Helen.
I started cycle 20 yesterday. Get my definitive update on how I’m doing on the 14th July. Had a few little problems colds etc. for some reason my catheter has started to block regularly after three years of no problems.
Funnily (not funny really) enough I had just noticed I was getting headaches the past week! They’re not bad just a niggle but I’d never had them before. I will see if they return at the end of this cycle. How are you getting on besides the headaches?
How is the refurbishment coming?
We’re off to Belgium on Friday for a few days.
Every day is a gift.
love Andy xx
Hi Helen.
I was great to see you at the info day and have a catch up. I think the info days are brilliant and I think everyone, who’s able, should at least attend one. The information and advice is invaluable in my opinion.
It sounds very peaceful at your holiday home no modern technology to disturb the peace and quiet well until the diy tools start up lol.
Yeah I think we must be special Helen and pretty rare too it seems.
Hi Mavis.
All sorts of thoughts were running through my head when my hip started playing up and none of them were good. I can’t believe I’ve been on Pomalidomide so long it’s passed so quickly. I just hope it’s got plenty of life in still. Need to hang on for the next big thing.
Hi Vicki.
I must be used to taking the medicine and getting on with things now Vicki. After all I’ve been shovelling the tablets down my throat for nearly four years now. I get tired easily and sometimes fall asleep in front of the TV and spend longer in bed than I used to but there again I’m not getting up early for work anymore.
We know this is our time, today, because things aren’t going to get better tomorrow so we’re doing everything we can whilst we can. With a bit of luck money will be the cause of us cutting down on our travels and not bad health.
How are you coping with Colin being tired and everything? Do you have support around you? and how is Colin coping it can’t be nice being too tired all the time to do anything.
Every day is a gift.
Andy xxx
Hi Helen.
Sorry to read that an Allo has been ruled out for you too. We need as many options as possible and it’s always worrying when one is ruled out. The most important thing is that Pomalidomide is working and your feeling well.
Hi Vicki.
What was the reason given for not offering Colin a second SCT? Was it due the length of the remission the first time round?
Bendamustine and Melphalan are both harsh treatments and are probably my next ports of call after Pomalidomide. Plus with our ward having closed I’ll be miles from home when it’s being administered.
Have you and Colin thought of asking for a second opinion re SCT and Revilimid?
Every day is a gift.
Andy xx
Hi Jill.
Glad to hear your mum seems to be tolerating Pomalidomide. I hope her blood tests come back showing it’s working. I found it had a quick effect on my PPs. Dex is the devil drug in the battle against myeloma.
Every day is a gift.
Andy xx
Hiya Mavis.
We had a great time in Greece. I had a problem with my back/hip the last couple of days and found it very painful. It was worrying with a the usual fears going through my head. I had my regular blood test and drug pick up appointment when we got back and got my back checked out whilst I was there. Fortunately it turned out to be muscular rather than bone pain – phew.
We’re booked up to go back to Greece in September again all being well. In the meantime we’ve got a trip to Belgium.
I hope you manage to get to Luxembourg. How are you doing?
I know my galavanting will have to end sometime but hopefully not too soon.
I’ve not been called by the day unit re blood test so I’m assuming all is ok.
Pom cycle 19 has begun.
Every day is a gift.
Andy xx
Hi Stanley,
I too have found my hangovers have diminished somewhat.
I was told at a consult with Prof. Jackson when I went to see him in 2012 when all my treatments till then hadn’t worked and auto and allo sct’s had been ruled out to go out and enjoy life as much as I can. We’ve followed his advice . In our position it’s do it now because you may never get a chance later.
I’ve never been told to lay off the alcohol and a question was asked at the info day about alcohol and reply was there’s no evidence of it interfering with treatment. Though there was a word of caution that as it’s a diuretic you need to drink plenty of water asap afterwards.
Cheers Stanley and enjoy your booze. In moderation of course.
Oh you need to be careful with a couple of antibiotics as they don’t mix well with alcohol but that’s spelt out in big letters on the box.
Every day is a gift.
Andy
Hi all. weekly Dex
Me inspirational now there’s a first 😇
Well cycle 18 had a little sting in it’s tail. Had quite bad leg cramps last night for about an hour. Strange place too on my shin. I get cramps quite regularly at the end of cycles have done since I started Revilimid in 2012 and has continued with Pomalidimide. Guess I’m not drinking enough. Though I’ve been knocking the beer back as fast as I can.
Today is my weekly Dex day so I guess I’ll be awake most of the night. Might just stay by the pool at the bar 🍺😋😂
You’ll be popping into Argostoli which is a lovely little place Carol. I’m sure you’ll be well and you will have a great time.
Every day is gift.
Yamas Andy xx
Hi Dawn,
It can be daunting especially when you’re just setting out on the myeloma journey. Every blood test is approached with trepidation. It does get easier I don’t even ask about my results anymore because I know if I have a problem they will call me as they did my last test with my phosphate being low.
Hopefully CDT will do the trick for you and you’ll get a SCT and years in remission. The worry of myeloma never goes away and I think how you cope with it will define how your quality of life is affected. I personally live each as it arrives I don’t think too far ahead though I have tried and put everything in order for my wife. I haven’t gone down the why me line because I decided it wouldn’t achieve anything. I am where I am living each day the fullest I can and tomorrow can take care of itself. Sorry I think I’m rambling on. Blame the steroids. I’ll review the post when I’m a bit more clear headed and see if it makes sense.
Every day is a gift.
Andy xx
Hi Helen,
I was just saying to Steph today that I should text you to see if you were going to the info day! Unfortunately I couldn’t get a signal, we’re in the Lake District, and when we got a wifi connection in a handy pub I got an email of your post!
I’ve seemed to of had a cold on and off since before Christmas though things seemed to of eased up in the nasal department now.
Anyway we’ll have a good old chinwag a week on Saturday.
Every day is a gift.
Love Andy xx
Hi Vicki,
sorry to hear Bendamustine isn’t working for Colin. It’s a horrible feeling when the consultant says any treatment isn’t working. Hopefully in a month or two Colin can go on to Rev and Dex and get some longevity out of it. I got 22 cycles of moderate stability out of Rev before it stopped working for me and if Colin can get something close to that there will be other options by then.
Both Bendamustine and Melphalan have been mentioned as future options for me but hopefully not too soon.
I hope everything goes well for Colin and for you as well.
Every day is a gift.
Andy xxx
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.
Hi John,
I’ve never been in the position to have a SCT so I’m not sure if you’ll find my point of view valid.
I have wondered what I would do if I was offered a SCT as there seems to be a debate going on to whether it’s the gold standard for treating myeloma. It’s especially being discussed in America but the two camps are divided. Some say novel drugs are the way forward other adamant that SCT is still a valid treatment. Here in the UK it’s slightly different because we don’t have access to the same novel drugs as they have in America.
Where do I stand? Well if I was offered one, very unlikely, I think I’d fall into the “go for it camp” I agree with Richards reasoning if it works fantastic and you may get a long drugs free remission that could last for years. If it fails or only gives a short remission you will of had the hard time but even if you only get 18months out of it there will be new drugs available then and you won’t of used up any older drugs in that 18 months so you’ll be further on and hopefully had a bearable time.
Anyway it’s your decision and I wish you luck whichever way you chose.
Every day is a gift.
Andy
Hi Jill,
I’m on the 4mg dose of Pomalidomide and I start my 18th cycle tomorrow. They do seem to be loading your mum with antibiotics I myself take ciprofloxacin as a prophylactic as I have an indwelling catheter and its to guard against uti’s.
I’d give your mums specialist nurse a ring and ask why the antibiotics have been prescribed.
Every day is a gift.
Andy xx
Hi Vanessa.
Unfortunately coughs, cold, and infections are a way of life for us mmers so it’s not unusual. Even when not neutropenia our defences are low. The constant being under the weather will get anybody down and as long as his blood tests come back ok there’s not a lot that can be done.
You can ask for a second opinion and it won’t be held against Stewart though I suspect that it won’t change much. That’s obviously only my opinion and I could be wrong.
Try not to worry too much, easy to say hard to do, and stay vigilant. I go through what you describe every winter and usually end up in hospital at least once in the new year!
Every day is a gift.
Andy xx
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
