Hi Maureen

Sorry to hear Ian’s SCT delayed. As you say though better safe than sorry. Colin and I have both had the flu and so his third cycle on bendamustine is delayed a week. Debatable abouth whether it’s working. Cycle 1 it went up from 7000 light chains to 10000 but not sure if it really went up as they had no measurement after the Velcade…[Read more]

Hi, I know exactly how your husband feels about not being interested in food. I weighed about 11 stone prior to being diagnosed with myeloma in 2010, but the weight just fell off whilst I was going through chemotherapy and following a SCT, with my weight reduced to 6 stone. My body looked a mess and finding clothes to fit was difficult. Most…[Read more]

Hi David,

I hope your new treatment works well. I’ve read such good reports on the Myeloma Beacon site about Daratumumab. My consultant in Birmingham is also quite excited about this new drug, which is supposed to have a good response rate and well tolerated, but only available in the UK on the clinical trial which you are undertaking. If you…[Read more]

Hi Robert

I can really understand why you are so pleased with your blood test results. Your drop in paraprotein level is excellent. Fingers crossed, your next results will be just as good. The B12 injections have certainly managed to raise your B12 levels. Are further injections going to be necessary to maintain your B12 levels, or was the…[Read more]

I’m so sorry to hear your news about your dad. He always sounded so positive about life and his treatment. My condolences to you and your family.
Jan W

Hi Helen

I always used to rely on my relatives for my knitwear, but unfortunately they all had to give up knitting due to arthritis in their thumbs and the weight of a garment just made the pain worse. I’ve tried to learn how to knit on many occasions over the years, but with no success.

My light chains are still going up and down, with the…[Read more]

I’ve been on multi B vitamin tablets for the last four years. Haven’t a clue whether it makes any difference. I also read the report on myeloma patients with lack of B12.

Jan

Hi Helen

You certainly keep yourself busy with the wedding and now a holiday cottage, together with a house move. I’m exhausted just thinking about all of the work involved! At least the holidays should be relaxing.

That’s great news about Pomalidomide working for you, with your light chains reducing well and your neuts looking a lot…[Read more]

Hi helen,

Thanks for the information. It was helpful. By the way Colin has no pp detectable. He just has light chains only. We have bt had any results from cycle 1 yet. What we do know I’d that bendamustine is like being hit with a sledgehammer, even with the steroids he has slept for most of today. We are told that’s normal. Just hoping that it…[Read more]

I am so sorry to read and hear this news, it’s shocking. I can’t believe you have had to suffer this. Thinking of you at a sad and distressing time

Vicki

Hi Jacqui

Hope you get some good news with geoffs treatment. The specialist nurse was aboslutely brilliant. She was informative and encouraging. We felt like two different people when we came out of there. She is definitely worth a chat. She has time and doesn’t mind what questions you ask. Would definitely recommend it. We should meet up some…[Read more]

What a difference it makes. We saw the specialist nurse today, Colin has started cycle two. She was amazing, positive, practical, informative, discussing options with out minimising what is at stake. We felt like two different people coming out of the appointment today. It gave us both renewed positivity and willingness to look to the future.…[Read more]

Yes absolutely endorse what carol,was saying, drink plenty of water and other drinks to keep the kidneys flushed. The light chains can cause problems with the kidneys so it’s importsnt to drink lots.

Vicki and Colin x

Hi jells,

Yes I would endorse what any says, it’s much better to disclose and being totallyopen means there is no room for argument or ambiguity,

Vicki and Colin x

Hi Karen

Just catching up and wondering how things are going? Does your get measured by pp only or do you have light chains as well?

Thanks

Vicki

Hello Anthony

Not had any experience of the pp shooting up but Colin has had revlimid and it was very effective for him. So good luck with that. It’s such an individual condition isn’t it!,

Best of luck

Vicki and Colin x

Hi jacqui

I will private message you…..colin isn’t happy I posted this as he thinks they will be cross and his treatment might be affected. I mentioned no names but it was a very difficult day yesterday. I reckon jeff must be doing ok if they are pressing on to the third cycle. Must be working! That’s good. The weird thing is that Colin has no…[Read more]

Hi all

I see that you’ve all tried a variety of treatments. Did fatigue figure a large part of your daily lives. Colin is on treatment at the moment and had only the first cycle but what we don’t know is whether it’s the mm that is causing the tiredness or the treatment….. Colin was bemoaning the fact that he get so tired after doing anything,…[Read more]

Hi Maureen

Colin had 750 light chains when he had SCT and got to full remission. It is possible. It’s just important to remember that each person is different. Ian has come along way andnthismis the big chance 🙂 it was lovely to see the post from the lady who has had mm since 1996. What wonderful encouragement.

Wishing you all the best

Vicki…[Read more]