Hi Andy

How nice to hear from you. How are you keeping ? well I hope.

My post should have read no activity on my scan. My consultant told me thoughts have changed and they don’t do anything until PP’s reach 50 then they do a bone marrow and go from there.

Are you still on pomalidamine?

Best wishes

susie

So very sorry to read of your husbands passing. My thoughts are with you at this very sad time. x

Hello Helen

So to hear of your problems. I do hope you’re feeling a good bit better. Have they blamed the ixazomib ?
It will be such a shame if it is found to cause problems because it saves having to attend a hospital so often for Velcade.

I’m at Wycombe Gen so as far as I understand it comes under the Thames Valley Network from the Churchill.…[Read more]

Hi Les

I’m reading your posts with much interest. I’m relapsing at the moment and have been told I might well be on the regime you are, Ixazomib, lenilidimide, and dex. I’ve had Revlimid before so I know what to expect from that, but I’m interested in how the ixaxomib affects you. There is a big but and that is my consultant seems very cost…[Read more]

Hi Andy

Nice to hear from you. It seems many of the old posters have gone elsewhere, as they don’t input here much any more. I hope you are keeping as well as possible.

I spoke to my consultant yesterday about stopping/reducing the Zometa. He said the reasons its given continually is that it interferes with the actual myeloma cells thus having…[Read more]

Thanks Jan. Gosh 5 years on Zometa. With me at the start of my journey, I didn’t have any lesions so I was lucky. I do have a very painful lower back but they’ve told me it’s wear and tear. ie vertebral slip caused by slipped discs.

I have my appointment this afternoon so we’ll see what he says. I’d be happier having it 3 monthly but whether…[Read more]

Hi Stanley

Thanks for your input. Having read some of the myeloma beacon articles. I may see if my consultant would agree to 3 monthly infusions. I’ve seen that some medics say one thing and others say the opposite. I know my dentist says Zometa stays in your system for years, if so why continue if its not necessary.

Thanks again.

susie

Thanks a lot David. I’ll see what my consultant says but I do want to stop it. Apart from anything the thought of osteonecrosis gives me nightmares and I’ve become obsessive with mouthwashes.😀.

All the best

Hi David

How interesting your doctors are saying there is no benefit in giving Zometa for more than 2 years. May I ask where you are being treated ? I shall be telling my consultant next week that I don’t want to continue with it. It seems the hospital I am at gives it indefinitely!

Thanks so much for your reply.

Best wishes

susie

I was on the Myeloma X1 trial on Revlimid. From about cycle 3, I had tongue problems. The right side of my tongue felt as though I was recovering from a dental anesthetic. It was that feeling you get when a local anesthetic is wearing off. My consultant thought it rather amusing ! I didn’t and I thought it could be a form of neuropathy. It went…[Read more]

Thanks for your replies guys. I’m not going abroad in September just to Cornwall. Just wondered how others cope if they go away whilst on treatment. And if meds are stopped while away.

Best wishes

susie

Hello Shytalk

Please don’t feel you are any different for feeling sad and scared, I’m sure we all feel that way at the beginning of this M M journey. I remember at the start of my treatment I was told by my consultant “most people sail through this treatment with no problems” So when I started treatment and felt so poorly I felt something was…[Read more]

Hi Mike

Thanks for your reply. Very reassuring that side effects appear limited for you. Maybe Velcade wont be so bad.

What were your PP’s when you started treatment. What dose of Dex do you have.

I hope it continues to knock your M M on the head and you’re soon into a good remission.

Best wishes

susie

Hi Andy

Once again you put things into perspective for me and I thank you very much. I guess I was having one of those sorry for myself days. It’s just I have one doctor (consultant) telling me he wont start treatment until my PP’s reach 30 plus unless I develop symptoms. And another (specialist registrar) telling me they don’t wait for symptoms…[Read more]

Hi Andy

Nice to hear from you. How are you doing, well I hope.

I don’t claim any of the mentioned benefits. I struggle on with this back which may be daft, but that’s me.

Best wishes

susie