Do check with the doctor but Stephen used Corsodyl toothpaste and mouthwash during treatment (not good to use it on a long term basis but it really helps)

He managed to get through all treatment with not one ulcer or mouth problem.

Good luck from Gill xx

Dai,

Good luck with the Bendamustine.

I mentioned to Keith about getting a PICC line fitted to avoid having to have cannulas,Patrick had one in his upper arm no problem.

Regards

Tina

All I can do is wish you tremendous luck with whatever you decide. As Nettie said this is such an individual illness, and with that comes very individual decisions

My husband only got 16 months remission with his SCT and the second did not take. He regretted that he went for the second but said that hindsight is a wonderful science and we both…[Read more]

Hi Keith

I meant to ask – do you have a PICC line in place or are you still being stabbed evry time you have bloods / platelets etc?

A PICC line avoids all that pain and bruising and is just a simple procedure.

Tina X

I'm keeping everything crossed for you Keith
Love Tina X

Hi Kes

mm is a complete and random illness. Some people live for umpteen years and others (like my husband) don't get that long.

Stephen and I decided just after he was diagnosed that if we did not continue our lives "normally" whatever that is he might just as well die there and then

We made no long term plans ie well in 8 years time…[Read more]

So pleased to hear your news

Tip for sore mouth Corsodyl you can get mouthwash and if she can bare cleaning her teeth the toothpaste helps a great deal

Keep the good news coming Gillx

Hi Colin

I have no idea what the phrases mean but I do know that when Stephen (husband) asked the nursing staff to explain they did.

Stephen made it quite clear from the start that he wanted to know everything. He was a great deal braver than me

God luck and good health Gill x

Jet,

I had been following Lonnie Nesseler for a number of years and your news that he died earlier this year is such a shock. He was a true pioneer.

God bless you Lonnie.

Tina

Dai,

Yes, almost a year on Bendamustine and hardly any side effects. He did actually have one course of Pomalidomide, which I hasten to say was readily available to him at that time. Unfortunately the infection became more of a threat that MM so there was no point in continuing with it.
Patrick was neutropenic for almost 18 months.He was left…[Read more]

Keith,
I do not remember Patrick taking anything at all along with the Bendamustine treatment.He did have to have regular platelet infusions and never recovered from neutrapenia which began with the short-lived Revlimid treatment.
I agree with you about the bubble. I regret that Patrick continued to take super amounts of antibiotics when he…[Read more]

Hi Keith,

Back in 2010 Patrick had Bendamustine treatment for almost a year with very little side effects. He was, in fact quite "well" during this time. Similar to Sue's comment Patrick did have issues with platelets being very low however this was an ongoing issue before he began the treatment. Bendamustine is unlicensed but not apparently…[Read more]

Hi Sue,

I am still very up and down, trying to keep as busy as possible thankyou for asking.

I would most definately ask the question regarding Michael's prognosis. PP levels are only just one indicator of this complicated disease. As the it progresses some signs can go un noticed by us carers. For example Patrick developed clots on the…[Read more]

Thank you all for your kind messages and thoughts.

I am learning to start getting into my own routine and not "our routine". I walk the dogs, clean the house (lazily :-)and shop daily so I have human contact I even go out for lunch once a week. I am trying to find out about part time courses one to brush up my French and one to make my stick…[Read more]

Dear Gill,

The way I coped and still cope 18months after Patrick died is to keep busy. I have taken up windsurfing, taken a Diploma with the Photographic Institute and basically fill as much of each day as I can. I find strangers and new friends can talk to me about my loss easier than family and old friends. I came home from a week's holiday…[Read more]

Hi Keith,

No problem at all. Anytime I have some useful to say I will be here to support you all.

Regards

Tina

Hope you get some action and quick. When Patrick was alive and having treatment I always went with him to see the consultant questioning everything they did and didn't do. I believe I achieved a better standard of treatment behaving this way.
Regards

Tina

Hi Keith,

Patrick suffered badly with bleeding gums and ulcers in his mouth. Platelet transfusions stopped the problem almost immediately.Yell at the haem team if you have to, you should not have to suffer what is so easily fixed.
Tina

Hi Sue,
I have only just come onto the forum after a break and read your sad news. You were always so supportive of me when Patrick was fighting his battle and I wish I could find words to help you through this dreadfully terrible time.
As many have said, talk, talk, talk I am so very glad that Patrick and I had that opportunity even though at…[Read more]