Hi Kaz.

The first few weeks of most treatments are hard as the body copes with the poisoning it’s undertaking. If it persists or gets too much for your mum the medics will reduce the dosage of the drugs. The big thing to balance is quality of life over treatment especially in the elderly. That applies to your mum too Sarah.

Every day is a gift.

Andy xx

Hi Helen.

I started cycle 20 yesterday. Get my definitive update on how I’m doing on the 14th July. Had a few little problems colds etc. for some reason my catheter has started to block regularly after three years of no problems.

Funnily (not funny really) enough I had just noticed I was getting headaches the past week! They’re not bad just a…[Read more]

I always feel better once I have been on this forum,it helps to know that I am not alone in how I feel.So much of what has been said rings so true.I was diagnosed in 2014 and had sct same year and my pp levels are very low but are on the up,i had very good result immediately after sct,complete remission till may this year.I was of a very positive…[Read more]

Hi Susie,

I find I feel generally unwell after the Zometa infusion for a few days and it also upsets my digestive tract. This last cycle the Nurse let it run through in five minutes and two weeks later I am still not right. Makes me wonder if it is worth it?
Cheers

Karen

Hi there,

I might fit into your criteria. I had SCT after 6 courses of VCD, my IgG dropped from 52 down to 36 and then leveled out. As I don’t live in the UK, there was no criteria of proteins to be below a certain level before SCT. Post SCT my IgG dropped to 24 and stayed there for just over a year. I am back on treatment again because since…[Read more]

Hi Vicki,

The Mephalan is there to destroy the MM and unfortunately it is non dicriminatory so does literally destroy the good cells as well. There is not a lot that can be done, it’s down to the medics now and Colin. Sorry I can’t be more positive, you just have to sit with it and I expect the medics are doing their bit as well.

Hi Helen

Thankfully Pomalidomide appears to be working well for you, which is excellent news. At least you are able to spend time in your holiday home and able to enjoy yourself during the warmer summer months. Are your light chains decreasing whilst you are on this cycle of drugs? Did you learn anything about future treatments during your…[Read more]

Hi Helen.

I was great to see you at the info day and have a catch up. I think the info days are brilliant and I think everyone, who’s able, should at least attend one. The information and advice is invaluable in my opinion.

It sounds very peaceful at your holiday home no modern technology to disturb the peace and quiet well until the diy tools…[Read more]

Hi Helen.

Sorry to read that an Allo has been ruled out for you too. We need as many options as possible and it’s always worrying when one is ruled out. The most important thing is that Pomalidomide is working and your feeling well.

Hi Vicki.

What was the reason given for not offering Colin a second SCT? Was it due the length of the…[Read more]

Hi Maureen,

Sorry to hear Iain’s back in, still it’s probably the best place for him. As for me, my Heamoglobin dropped to about 10 so they were a bit concerned. I had another blood test last week, while they recovered my Leucocytes have dropped now. Still not doing too badly. I had the mock exam a few weeks ago and scraped by – blame that on it…[Read more]

Good news he is home, there will be a couple of ups and downs but make the most of it.

Richard

Hi Jill.

Glad to hear your mum seems to be tolerating Pomalidomide. I hope her blood tests come back showing it’s working. I found it had a quick effect on my PPs. Dex is the devil drug in the battle against myeloma.

Every day is a gift.

Andy xx

Hiya Mavis.

We had a great time in Greece. I had a problem with my back/hip the last couple of days and found it very painful. It was worrying with a the usual fears going through my head. I had my regular blood test and drug pick up appointment when we got back and got my back checked out whilst I was there. Fortunately it turned out to be…[Read more]

Hi,

So sorry to hear your mom is not feeling well, especially after she responded so well to the original treatment. I think you need to talk through your concerns with the nurses here on the myeloma UK discussion site. They will be able to advise you about issues to discuss with your Mom’s GP and consultant.

Regards

Jan

I’m so pleased that you’ve had results through so quickly and the news is good. I think having MM does make you more paranoid about your body generally. I know I have the occasional mini panic!

As far as your MM diagnosis goes, once you’ve got over the initial shock, you’ll start thinking straight again and realize that it’s by no means the end…[Read more]

Hi All,
Just about to start 6th cycle of VTD and have tolerated treatment reasonably well although the side effects create their own challenges. I have had a good response and have been referred for consideration for a SCT.
So next big hurdle we have to face is the decision on next steps for treatment. Other people posting on the forum seem to…[Read more]

I’m afraid we all go through the “have I, haven’t I stage” There is not a lot you can do about it. Be aware that some people have non secretary MM, that means it won’t show up by an increase in protein level in the blood so your husband may have to give a large Urine sample (taken over 24 hours) and a Bone Marrow Biopsy. All the best and I’m sure…[Read more]

Hi there,

Yes blood tests can fluctuate although not by very much. Another factor will be if the samples are tested by the same laboratory. Different equipment will give slightly different results.

As for the cold, ear infection and sinuses, I’m afraid I had the same before diagnosis. I blamed it my daughter bringing home allsorts of weird and…[Read more]

Hi Stanley,

I too have found my hangovers have diminished somewhat.

I was told at a consult with Prof. Jackson when I went to see him in 2012 when all my treatments till then hadn’t worked and auto and allo sct’s had been ruled out to go out and enjoy life as much as I can. We’ve followed his advice . In our position it’s do it now because you…[Read more]