Hi Stanley.

Hope your trip to Gran Canaria goes well. We’re back home now, got home Sunday night, getting back into the old routine of hospital appointments etc.

Got to say I do find getting away really is therapeutic and gives you chance to bury thoughts of MM for a while.

Hi Annlynn.

A weather update. A couple of days before we got to…[Read more]

Hi Stanley.

Hope your trip to Gran Canaria goes well. We’re back home now, got home Sunday night, getting back into the old routine of hospital appointments etc.

Got to say I do find getting away really is therapeutic and gives you chance to bury thoughts of MM for a while.

Hi Annlynn.

A weather update. A couple of days before we got to…[Read more]

Hiya.

Unfortunately steroids can cause our skin to become thin, amongst other side effects it causes, making  it easier to tear and bruise. If you’re on anticoagulants too, which you probably are since you’re on Revlimid, they will cause you to bruise easily too.

I’d mention your concerns the next time you’re at the day unit/hospital.

Every…[Read more]

Hiya.

Unfortunately steroids can cause our skin to become thin, amongst other side effects it causes, making easier it easier to tear and bruise. If you’re on anticoagulants too, which you probably are since you’re on Revlimid, they will cause you to bruise easily too.

I’d mention your concerns the next time you’re at the day…[Read more]

Hi Ren, I was in isolation for two weeks following the SCT, was released home, felt really weak and wobbly, had to use a stool in the shower and took ages to do anything, putting socks on was difficult, i found the stairs a bit challenging! It took a few weeks before strength improved, I guess the drugs were clearing my system. I had clinic…[Read more]

Evening Ren, I am 72 and had my second stem cell transplant last March. I had 26 months remission after the first transplant, during that time I took no drugs, had no treatment other than zometa infusions every three months, we lived life to the full, travelled a lot and enjoyed life, we fully intend to do the same again. The proceedure is hard…[Read more]

Hi Annlynn.

The weather can be a bit hit and miss at the end of September here in Kefalonia. Kefalonia is one of the furthest north of the Greek islands. The southern most islands will be ok though.

Andy xx

Hi Mavis & Annlynn.

I’m writing this whilst relaxing by the pool! Yeah I’ve made it to Greece a bit different from this time last year when I was in ICU!

I’m now on cycle 35 of Pom & Dex I think. My PPs have dipped just under 19 so hopefully I’ve plateaued again time will tell. I’ve been off Zometa for a couple of years now due to ONJ but when I…[Read more]

Hi Peter.

My understanding of pet scans is that they’re quite good at showing up active lesions but should be seen alongside mri scans for a complete picture.

Every day is a gift.

Andy

Hi Nippy.

It sounds to me like your sister is depressed.

Chemo can take an awful toll on the body making you susceptible to all sorts of problems and the thought of going through a SCT, which can be bad, will be playing on her mind and adding to the problems. Does your sister have access to a counsellor? They are a great help.

Anyway those are…[Read more]

That’s really good to hear Scott and I always think positive posts are very important on a site like this.

If you want more good news, I passed the 5 year marker-post since diagnosis in May and after the first horrendous year of CTD and SCT, my life has never been better. Full remission and drug free with an appointment with my specialist every 6…[Read more]

Hi Mavis.

It’s great to hear from you. I hope everything is as well as it can be with you. I’m not on here very often myself now either.

My PPs are determined to keep slowly rising so I guess another trip to Greece is in order whilst I still can.

Every day is a gift.

Andy XX

Hi Susie.

There still a lot of discussion going on about the benefits of Zometa at the moment. Some claims have been made that it has an anti myeloma effect but that hasn’t been verified.

I’d been on Zometa for just over two years before I had to stop it due to ONJ. At last years info day I asked if I would be able to restart Zometa when my ONJ…[Read more]

Hi Sue.

I would recommend the counselling.

It’s a massive blow to be told you have cancer and then be plied with lots of pill which basically poison us. I went through a hard time after being diagnosed and it took time for me to get back to some sort of normalcy.

Quality of life for me is the main thing and as he is in remission there should be…[Read more]

Hi,

I’ve been on Zometa for five years without any side effects and actually have reduced back/rib pain from the drug.

After relapsing in Oct 2015, I commenced VCD for eight cycles and in April 2016 I noticed a possible ulcer in my upper palette. After visiting the dentist, it appears I have some bone or tooth growth erupting through the…[Read more]

Hi Eve, great to hear from you again, just a shame about your news. It’s a case of using life’s previous experiences to help you with todays new problems. I am sure you’ll be most welcome here whenever you need a chat and of course, being the Oracle that you are, there are a lot of people that will need your advice.

As for Slim, it doesn’t seem…[Read more]

Hi!! Am back! It’s coming up to two years now since Slm died,had lots of adventures,but would have liked to do far more!!!

I decide to come back and tell you,why you should grab life by the throat and enjoy evey minute you have,I will not be replying to any answers,!!

I was diagnosed with Bladder Cancer in June of this year,although it’s very…[Read more]

Hi Linda

It’s good to read you have been having bone strengthening infusions for the last eight years, which have also helped to maintain your myeloma levels. I hope your levels remain low for a long time to come.

The extra bone in my upper pallet might be tooth rather than bone growth. However the amount of bone/tooth being exposed is slowly…[Read more]

Hi, You are right, there are so many different treatments available for myeloma which is good news but can be confusing. If you have a look at the information on this site, there are some useful fact sheets available about what each specific treatment involves. Probably a better suggestion would be for you to speak to the myeloma nurses from…[Read more]