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 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 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]

Hi Susie.

Sorry I do know much about vironostat other than it’s in a new class of drugs that are being investigated and undergoing several trials.

The trouble with myeloma is it never leaves you and unless you get the top rated remission ie no detectable myeloma you will probably not return to pre myeloma fitness. The drugs we take damage our…[Read more]

Hi Val.

When I was diagnosed I was told six cycles of chemo, CDT, then SCT. Well I’m still on chemo and SCT has just been ruled out again! Oh I was diagnosed October 2011 that’s three and a half years of chemo.

Everyone’s journey with this disease is different never count on anything going to plan.

As far as I know it’s up to you where your…[Read more]

Hi Helen.

I’m having a Dex morning! A new one for me. So I’m nosing around on here to see how things are progressing.

So now the wedding is out the way the move is back on. The grass doesn’t have chance to grow under your feet! Have you somewhere in mind to move to? Have you already mentioned it and my chemobrain has forgotten it? lol

A holiday…[Read more]

Hi Maureen.

The rule I was told at the beginning of my myeloma journey was that before a SCT you needed at least a 50% reduction in PPs levels before it would be considered. I suppose that applies to the other ways myeloma is measured too.

There is no “normal range” though the closer to zero the better as been stated in this tread already good…[Read more]

Hi Kells.

Just come across your post and see you’ve not had a reply yet.

In my eyes saving money on premiums by not disclosing MGUS is pointless because if you ever have to make any claim your medical history will be examined and your diagnosis of MGUS discovered and your insurance will probably be null and void so all your reduced premiums will…[Read more]

Hi Roo.

I’ve been on thalidomide and and thalidomide based chemo since October 2011 with varying side effects. Mainly tiredness. Cyclophosamide is the one that caused me most problems with nausea, lack of concentration, effecting my appetite etc.  I’ve been on full strength treatment since diagnosis so have been open to all the side…[Read more]

Hi.

Be aware when your dad has his first treatment it still could knock him back a bit even at a low dose. It takes the body time to get use to the drugs. Keep a diary from day one detailing what he took and how it made him feel. It’ll help the medics and will help your dad as he’ll know what to expect through his treatment cycles.

Keep his…[Read more]

Hi Vicki and Colin.

I hope Colin is coping better with the Bendamustine now and is getting the results we all hope for.

I don’t know how my PPs are at the moment. I’m a bit more laid back about my blood tests nowadays. So I only find out what they are when I see my consultant. Every three months! Well every twelfth week really 😉 I’m happy to…[Read more]

Hi John.

There are a few of us around who haven’t had a SCT for one reason or another. Drugs can get you into remission and you can get a decent drug free period that way too.

I haven’t had a SCT but that’s due to my myeloma being difficult to treat. Don’t give up on a SCT just yet once they hopefully sort your cough out you’ll get your…[Read more]