Latest update....

[Susiecarer]

Wow where do I start, so much seems to have happened in the last couple of weeks.

Whilst hubby was having transfusions his HB markers were climbing....100 two weeks ago....went back for blood tests on Wednesday.....HB dropped to 96 (no transfusion for 2 weeks) and Platelets have climbed from 76 to 276 !!!!! He is so full of energy I have problems keeping up with him, he seems to be back to the 'healthy' person he seemed before all he'll let loose !!!!!

Still on steroids although being reduced weekly, but colorectal want him off them before they can operate. Dr Schuh said no, but they came up with a compromise of 20mg which will be in effect from the 8th September so weeks away HOPEFULLY.....

We also discussed treatment and he has been denied FCR due to the fact he has had bowel cancer and skin cancer lesions......we will discuss treatments further in two months time when we see her, but she is looking at a mild type of treatment....i.e. Chlorambucil ( Leukeran) and Obinutuzumab (gazyvaro). Apparently there will be no loss of hair, possibly mild diarrhoea and hopefully no sickness. She said that these drugs are very good for this Evans Syndrome he has now developed....

All in all it was a positive meeting and we both felt calm and well informed when we left.

Lots of literature, once again, to read.

Take care everyone and have a great bank holiday. Will keep you up dated about next Wednesdays op for the melonama in situ (back of thigh) and his BCC on his ear. Not sure if I told you but they want to remove a bit more skin surrounding the areas purely as a precaution......hopefully he will heal better this time. !!!

Susiecarer

[UK-Sparky]

you are both together going through the wringer! Take care your selves in my thoughts and prayer list

UK Marc

[Newdawn Administrator]

Sounds like everything is progressing systematically and thoroughly Susie with a great result on the Hb markers. It must feel like you're both caught in a never ending medical spin but it will be sorted eventually so stay strong and focussed. The treatment suggested instead of FCR is sound in view of the other issues and hopefully this will effect a good remission. The important thing is it's sounds like you have a good medical team there and that's a major bonus!

Onwards with confidence. There must be some very tough times so sending huge best wishes. Thanks for keeping us updated.

Newdawn

[sandybeaches]

I am very glad to hear your husband is doing so much better as this has been such a difficult time for both of you. Hope his bowel resection can go ahead as planned and that he recovers quickly.

I am just curious about your statement that he will not receive FCR due to his bowel cancer as well as his skin cancers. Since I have had various skin cancers, with a melanoma as well, does anyone know if this is considered a contraindication for FCR in general, or just due to the other health problems of Susiecarer's husband.

All the best,

Sandy Beaches

[Susiecarer in reply to sandybeaches]

Hi Sandybeaches

I read it on Google about being refused if you have had bowel cancer plus other cancers in the last three years and Dr Schuh confirmed it yesterday.

Susiecarer

[Hidden]

Dear Susie and Hubby-thanks for keeping us informed. It's incredible how we adapt and realise we can handle so much more than we ever imagined. Thanks for the inspiration. be well. bill

[MsLockYourPosts Passed Volunteer]

When you read up on obinutuzumab (Gazyva in the US) don't get wrapped up in the sections about side effects. I had it in 2015 (without Chlorambucil in my case) and had NO side effects. I didn't even spend the first two nights struggling to sleep because of the steroids given for the first two day back to back split dose.