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…[Read more]

Hi Janet, ( and all),

I had SCT in January 2013, it has definitely affected my memory and concentration, I used to read a lot, now it’s a struggle. I may try that magazine with short stories. I suppose being on zomorph will not help, I have a lot of bone pain, because of late diagnosis, so it’s probably a mix of all of the above.

Good luck and…[Read more]

Hi Joe
I am a bit late saying this, but glad to hear your tests went okay, fingers crossed for you.
I am treated at Leicester Royal also. I have had 3 bone marrow test, I had a local and gas and air, the fist two were not pleasant but bearable. The most recent test was horrendous, worse than giving birth! And when nurse said that she did not get…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

Hiya Jill.

I’ve been on Pomalidomide for 17 cycles now and find the side effects very mild. I know everyone reacts differently but I’ve been through several different treatments and Pomalidomide is the easiest to live with I’ve had.

I wouldn’t take anti sickness tablets as a matter of course only take them if needed. Cotrimoxazole is is an…[Read more]

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…[Read more]

Hi Jan.

Paraprotein levels are only a part of the picture as far as Myeloma is concerned. As your husband is smouldering at PPs of 26 there’s no need for treatment. Some people live with higher PP levels with no problems and some people have very low PPs and have lots of problems. As you will come across Myeloma is a very individual disease.

The…[Read more]

Hi Maureen,

Good luck to Ian.

best wishes
Karen
xx

ps,

Sorry if that was dreary, I actually do not feel ill, just usual(a bit worse)pains. Managed to get away to France last week for a couple of days, lovely 🙂

Hope everyone is as well as can be expected, I intend to look in more as it is a lovely, friendly site.

Keep smiling xx
Karen

Hi all, thought I best check in. thanks for all your best wishes. The last few weeks have been hectic, backwards and forward to LRI and general, MRI, bone marrow biopsy (IT REALLY HURT THIS TIME!), full skeletal survey. I am making the most of this week, as it is the only week I will not be going to any hospital appointments! Yippee.

My…[Read more]

Hi Helen.

Well the Professor gave his considered opinion and SCT has been ruled out again with the same reasons as before due to the hammering my bone marrow has had due to the constant chemo. So even the my blood tests have been good they must lack in certain areas. I’ll have to get the full report from my consultant next time I see her.

I’m…[Read more]

Hi Vicki.

Just been catching up on the forum as it’s my DEX night! Though recently I’ve been managing to sleep on my Tuesday Dex nights not tonight though.

I find it strange your consultant seems to work in isolation. My consultant regularly has meetings, probably conference calls, to discuss her patients and treatment options with other local…[Read more]