This is a common side effect with Zometa but it usually only lasts for a few days then it will settle down.
I don't remember having this problem myself but maybe I was just lucky,one of the few times I have been with this disease.

Keith.

Hello Dai
Hope you get out of hospital before the weekend as I'm sure you will. I was admitted early hours Sat Morning with a temperature of 39.1 and a very high pulse rate. I got out today Tuesday and pleased to be home. I've posted the details on general and it was Sepsis that was causing the problem. This had been a long time in coming with…[Read more]

Hi Terry
You do seem to be suffering somewhat with this awful disease. I was diagnosed Dec 2007 and have had 2 SCT's and now on Bendamustine after 3 relapses. I start my second cycle on Monday with a 1 hour infusion followed by the same on Tuesday along with the obligatory Steroids. Side effects? not all that many in my case apart from the usual…[Read more]

Hi Tom
I would take notice of what Helen says with regards to private treatment,it's mega expensive and getting back onto NHS treatment can be difficult. As for Zometa I was originally on Bonefos after being diagnosed in Dec 2007 and then went onto Zometa March 2009 and have been on it ever since. It depends on your Consultant and mine said he…[Read more]

I've had 2 SCT's and 3 relapses inside 5 yrs and presently onto my 4th treatment. After my 1st transplant I asked about the possibility of maintenance therapy and was told that it depended on the remission that was achieved. If it was a complete response i.e. zero PP's in the blood as I was then MT was deemed to be superfluous. I was drug free for…[Read more]

Already tried that one and yes it does work very well. There is a better one which has Manuka honey mixed in with the Aloe Vera and a shower gel which supplements it. It does ease the condition but the problem is it keeps returning.

Keith.

Hello Dai, so you too are going on the Bendamustine route very soon,well I wish you luck on your new journey.
I started my treatment with a 1 hour infusion on both 16th&17th Nov. I felt tired and my appetite dropped off somewhat but after the first few days returned to normal. On the whole I'm tolerating it well but my blood counts are still…[Read more]

I've had 2 transplants,first one lasted 2yrs4mths 2nd lasted only 7 mths. During my first harvest they got enough cells for 2 transplants so a second was an obvious choice. 9yrs is excellent remission and because of this even if you only get 1 third of that which seems the average for a 2nd sct it would equate to an extra 3yrs. My choice would be…[Read more]

Hi Sarah

Chest infections are a big problem with us MM patients. I myself have had countless infections and they really do take it out of you. Can I ask you is Henry Neutropenic? (neutrofils less than1.0). This would be the reason he has had so many infections in such a short space of time as I myself did. Oral antibiotics are of little use it…[Read more]

Hi Scott

Haven't you not yet had an sct ? You're right to be concerned about your kidneys because it does put a lot of strain on all your organs but in particular the kidneys. If they thought a transplant was a possible option thorough tests would be done 2-3 weeks before the procedure went ahead. I went in for a day to be tested before both…[Read more]

Hi everybody,

Bendamustine is a chemotherapy drug that damages the DNA in myeloma cells which prevents them from replicating and multiplying resulting in the death of the MM cells. I have had 1 cycle the minimum number of cycles is said to be 6. I was told that it can take some time to show any benefit and that regular blood tests must be taken…[Read more]

Hi Andy
I was doing ok but after the 2-4 drubbing my team got today I'm not so sure,should have stayed at home. 60 mile round trip to watch that rubbish?????? Anyway not too bad up to now. Go for blood test Monday to see how things are working and hopefully things are on the rise.

Thank's again.

Keith.

Well done Andy and keep up with the good health. Lack of sleep with the steroids is my biggest problem at the moment even though I take them very early in the morning. I've had my quota of them for this month so hopefully it should settle down.

Stay well mate and again well done.

Keith.

Hi Tina

I don't have a line fitted although I do have experience with them and not all good. Apart from problems with infection I had a hickman line that wouldn't give out blood even though it would accept infusions into it. So I was at a stage where I was still having to be stabbed every time they needed a sample which was an added…[Read more]

Hi Jo

Yes you're right in that as long as a previous treatment has worked for 6 months or more it can then be used a second time which gives us another option in our fight against the dreaded MM. Hope your own treatment works well for you Jo and your Hb starts climbing up. Thank you for your support which is very important to me and all others…[Read more]

Thank you Andy and to everyone who have sent their kind thoughts and support. I will certainly keep you all informed as to the ongoing progress or otherwise of this treatment. I had my 2nd infusion of Bendamustine yesterday and that is it for one month. I take Prednisolone and Dex days 1-4 and that apart from Ondansetron and 1 tablet per day of…[Read more]