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,

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

That’s really good news. Ian has been through a long journey to reach SCT. I hope all goes well.
Regards
Jan

Hi,

From experience, the test can take up to two weeks for the results to be returned to your consultant depending on where the results are analysed in the UK. Usually, both a blood and a urine sample will be tested during the diagnosis of multiple myeloma because some proteins, such as the Bence Jones proteins (free light chains), may not show…[Read more]

Hi,

Sorry to here about your Dad’s continuing back pain. When three of my vertebrae collapsed in 2010 whilst sleeping in bed, I couldn’t move at all for 10 days. I lay on my back in bed for some relief, but managed to gain bed sores on both heels, together with losing a fair amount of skin on the bottom of my feet from the pressure of remaining…[Read more]

Hi Tracey

You need to find out what is causing your husband’s leg pain, therefore I would suggest you certainly contact your husband’s consultant or the hospital team dealing with your husband’s treatment to talk through your concerns. Another consideration is to speak to the myeloma nurses here on this site about your husband’s leg pain. If you…[Read more]

Hi Richard

Sorry to hear about you having to start a new treatment, especially with you experiencing so many negative side effects from the drugs. It does bring back vivid memories of my experiences with 4 cycles of CDT. My concentration levels were so poor. I couldn’t even fill out an easy passport renewal document without making mistake after…[Read more]

Hi Helen

It’s good to hear your news that pomalidomide is still working for you and yes, I totally agree with your comments that the longer you can delay treatment then the more chance there might be of new drugs/treatment being available in the future. Although having the flu for five weeks must have been exhausting and difficult for you,…[Read more]

Hi Robert

Sorry to hear you also had the flu virus. I hope you recover speedily, although I must admit that it’s taken me a good four weeks to feel my energy levels returning. Hopefully, you will not see your light chains increasing, because you have some time for your immune system to recover before your next appointment in June. However at…[Read more]

Hi Robert
I hope your b12 injections are continuing to work for you.

As expected my light chains increased by over 300 due to the flu virus. Hopefully in the next 8 weeks they might decrease in time for my next hospital visit. I asked my consultant again about measuring my b12 levels, but was told that this was not routinely available when my…[Read more]

Hi Janet
I still wear bed socks throughout the day and during the winter months at night in order to help with my cold feet. My SCT was in 2010. My concentration took around 18 months to resume to almost to normal, with my memory loss taking around two years to recover. I remember trying to pay for some items on my debit card in a shop about…[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

I’m sorry to hear that your husband has been diagnosed with myeloma and has been suffering pain in his kidneys, ankles and feet. However, now that he is being monitored by a myeloma consultant, he will have his blood and urine regularly tested to determine whether he has any causes of concern such as raised calcium levels, kidney problems,…[Read more]

Hi Robert

I think it’s really good that your vitamin B levels are being monitored. I don’t think I’ve been told mine or my other vitamin levels such as vitamin D. I asked whether a B12 supplement would help boost my consistently low immunity levels, but didn’t get much of a response. I now take a multi B supplement on a daily basis which…[Read more]