Hi Tina.

Sorry to read that your PP’s are rising. Hopefully this rise will be very slow and that the Revilimid can hopefully beat them back into submission. You won’t have to have full on treatment till the myeloma starts to effect your health. That could be a long way off.

I’m sure your medics will be working on a plan for you.

Good luck I’ll…[Read more]

Hi Laura

I am so sorry for your loss,before a consent form is signed the doctor has to explain all the risk involved,you tend to be bombarded with information ,so in the light of this I would say it was explained and because of the amount of info you have to listen too,it’s been said but not regested. I do think information like this should be…[Read more]

Phew it made it at the tenth time of asking xx

Hi Everyone.

Well it’s Dex insomnia time again. I’m still making steady progress. I still tire easy and my back is reminding me constantly that it’s not happy! The good news is I can make it to the pub for a drink and occasionally for a meal too though a lift in my sister in laws car helps and Steph has to go to the bar for me though I do…[Read more]

Ha – I knew it a little post complaining would get through. One more try at the long one then it’s tv time. XX

Hi Jan.

I think it’s a site problem I can’t post anything either though if you’re reading this it must of worked lol. Anyway I’m giving up posting tonight time to watch some tv curtesy of Dex.

Every day is a gift.

Andy xx

Hi Maureen

I’ve just lost my last three attempts at replying to your post and my computer is jamming again as I write. I am so happy that you are leading a more normal life now that Ian is in remission with his myeloma. You must be relieved he is only having to see his consultant every eight weeks and that his myeloma levels are holding well.…[Read more]

Hi Jan.

The sepsis was probably caused by the pneumonia. It’s when the bodies immune system goes into overdrive fighting an infection, I think. It can cause damage to your organs and can be fatal when serious as your organs shutdown.

Fortunately I think I’m making good progress along the road to recovery as I’m able to manage to get out a little…[Read more]

Hi Helen

That’s great news about your son managing to obtain a job with apple. I hope he enjoys the work and can also enjoy some music work during evenings/weekends to keep his interest and motivation going to eventually find a career in the music industry. He should be able to help you with your problems accessing the internet. I swopped my…[Read more]

Hi Andy and Helen

Andy good to know you are much much better,when that drinking arm starts working,then I know you are fine, I hope you are helping Tom,by drinking his measure,he looks good,even though he is in a hospital bed,bet he has the nurses in stitches.

Helen no one ever gives up hope!! I look on it as an acceptance,that the miracle cure…[Read more]

Hi all.

Well I’ll try this again since my original post has disappeared – I blame Dex!

Anyway it was just a little update of how I’m progressing. I’m feeling a lot better now and I’m  almost back to where I was before my extended holiday on the NHS. Physically I’m improving steadily. I had a visit from my Intermediate Care manager today and she…[Read more]

Hi Maureen.

It’s a small world isn’t it. We’ve been to Harrogate and Rockcliffe hall in the past few weeks.

We went to Harrogate with my brother and his wife and met up with our sister and her husband, who live there, to go to a concert in Harrogate.  We saw Squeeze and John Cooper Clark after a lovely meal in a nearby hotel. We went to…[Read more]

Hi Pav

Don’t know if I will be of any help. Myeloma is a very I dividuL disease. My husband, like yourself, a routine blood blood test and something showed up and doctor sent him to haematologist. They did a bone marrow test and told him that it showed myeloma but he was smouldering. That was in 2006 and up until 2013 he was still not showing…[Read more]

Laura I’m truly devastated to read your post. The risks were explained to us before my husband had SCT but to be honest I don’t think they registered with me. Although my husband has been in remission for over two years, he said he would never do it again. I’m truly sorry for your loss

Jean xx

Hi Andy

It’s so good to hear that you are now fit enough to be back on Pomalidamide and that you are making an good steady recovery after your exhausting intensive care treatment in hospital. I can’t imagine just how tough and worrying it must have been for you and your family over the last month. I hope the tough physio treatment manages to…[Read more]

Hi Helen

I have never heard of a treatment called ESHAP. Going to have a look around to see if I can find anything about it. Whatever it is I hope it works for you.

Every day is a gift.

Andy xx

Hi

I hope your father’s treatment is going Ok with VDC. I started my first relapse treatment of VDC about the same time as your dad. I have experienced a range of various side effects, but fortunately have not experienced a headache.

Both the Velcade and/or the dex might be responsible for his headaches. If you look on the Myeloma Beacon…[Read more]

Hi,

I wondered whether your husband is also taking an antibiotic with his pomalidamide? I ask because
I’ve just started on my first relapse treatment of VCD and during the end of the first two weeks I developed a full pin head body rash, with an angry red skin and raised temperature. I felt as though I was burning up from inside and ended up…[Read more]

Good morning. I assume your partner started on Velcade due to kidney problems because the usual first treatment is CDT. I wouldn’t worry too much about the next treatment options as there is several available. Either standard treatments or newer drugs available through trials. Revilimid hasn’t been completely removed from the CDF and is available…[Read more]

Hi All.

Just a little progress report.

I’ve started my next cycle of Pomalidomide cycle 24 I think and tonight is my Dex night 👀 so I may ramble on a bit or a lot. 😊

Ok progress – I’m feeling a lot better eating and drinking is almost back to normal well myeloma normal. I had a major breakthrough and big boost last weekend in that we went out…[Read more]