Hi Val

It’s such a hard question to answer, because it all depends on how your husband reacts to his ongoing chemotherapy, whether he needs to change drugs, whether he will be going through a stem cell transplant and whether he has any infections/colds which will all affect his recovery period. It really does vary tremendously from patient to…[Read more]

Hi Val

It’s such a hard question to answer, because it all depends on how your husband reacts to his ongoing chemotherapy, whether he needs to change drugs, whether he will be going through a stem cell transplant and whether he has any infections/colds which will all affect his recovery period. It really does vary tremendously from patient to…[Read more]

Hi Andy

That’s wonderful news for you Andy. You must be so pleased to see your myeloma levels reduce to their lowest levels since 2011. Is this usual with Pomalidomide, i.e. does it take a long period to show results and can you expect your levels to drop even further?

Kind regards
Jan

Hi,

When I was diagnosed with myeloma in 2010, my kids were aged 17 and 19. Both were taking their mock exams, so we were concerned about how the news would affect their studies and their lives. Being a bit older than your children, they did ask a number of questions and although you try to be honest, upbeat and positive, you forget they pick…[Read more]

Hi Amanda

I remember very clearly finishing four cycles of CTD in 2010 and after some blood transfusions, feeling much better. Coming off the drugs meant my energy levels returned and I lost many of the side effects of nausea, constipation and muscle weakness. However, like you, I then began to worry about the next stage in the procedure of the…[Read more]

Hi Helen

A painful BMB is not pleasant, even the bruise afterwards can make you wince with pain when you turn in bed or sit back on a cushion. I hope your house survey goes well. I don’t think I could face the effort and energy required to move house again, especially with the large quantity of junk we have managed to accumulate over the years.…[Read more]

Hi Jeff,

I hope your operation on Monday goes OK and offers you some relief in your pain. I’m so sorry to read about your arthritis. Last year, my elderly father suddenly started to lose his mobility. Eventually after nearly nine months of investigations, scans, tests/MRI, he was diagnosed with arthritis in his lower spine which appears to…[Read more]

Hi,

Going through the process of a stem cell transplant is quite different for every patient. Some individuals sail through the recovery period feeling a little weak or fatigued, where as other people find the recovery period to be quite slow before their energy returns. However, you are normally only released from hospital following a stem…[Read more]

Hi Fuzz,

How was your appointment with your GP? Did you push for blood results? Your immunity must be low at present for you to have another chest infection, sores on your tongue and kidney infection. Hopefully all of your aches, pains and infections might be nothing serious. But you need to press for further tests to try to determine the…[Read more]

Hi Helen

Your life has certainly been quite eventful over the past few months. I should think you are exhausted after moving house and need the spare time which your retirement offers to recover, relax and spend some more time with your family. Did you enjoy your time at the film festival – it must have been a memorable and completely different…[Read more]

Hi James

I know how you feel. Unfortunately the myeloma drugs, including Revlimind, can cause constipation (see Myeloma UK factsheet on constipation). I suffered with severe constipation during my myeloma treatment with CDT, especially during the third and fourth cycles. My regular use of pain killers for a collapsed vertebrae also contributed…[Read more]

Hi Jeff

I would certainly like to reduce my painkillers, although I realise that I cannot manage without some type of pain relief due to the pain around my vertebrae especially when I am tired or have carried out too many tasks during the day. I still have to regularly sit down to relieve back pain. I would love to be able to sleep on my front,…[Read more]

Hi Jeff,
I’ve been using fentanyl patches since my vertebra collapsed some four years ago. Overall, the medication has worked well to reduce my back and rib pain, but initially had to be supplemented by tramadol tablets every day. Like you, I’ve had similar discussions with my consultant and GP about trying to reduce the dose of my painkillers.…[Read more]

Eve, I can completely understand why you feel so numb. Your past few months must have been so emotionally and physically intense caring for Slim. From all of your posts, Slim sounded so positive in his approach to this awful cancer even during his final few months, which would have been because he always had you by his side for the love and…[Read more]

Hi Anthony

So sorry to hear your news about your myeloma returning after such a short period of time. In your post, you ask about details of clinical trials. If you look on this site under the heading of clinical trials, you can find full details about various trials available for relapsed patients across the UK.

Very best wishes.

Jan

Hi John

Sorry to hear you dad is finding the treatment difficult. Some people are lucky to sail through chemotherapy without many side effects, but others can suffer various side effects such as weight loss, fatigue, infections, nausea, muscle weakness, loss of taste, hair loss, etc. Like your dad, I also have a curved spine due to three…[Read more]

I would certainly mention your pains and aches to your specialist. My myeloma was diagnosed in March 2010. For approximately 9 months prior to the diagnosis, I would experience some strange aches pains in my hip, under my rib cage, around my kidneys and in my back. The pains would come and go. I just thought that I had strained certain parts…[Read more]

Hi Vicki

I know it’s really worrying and stressful when you see light chain numbers increasing. However, hopefully it’s just a blip due to Colin’s recent virus on his holiday. My light chains usually increase by 200 following a cold virus, but six weeks later they drop again sometimes back to their original number and sometimes just slightly…[Read more]

Hi,

Like others, I remember it well losing my taste during CDT and it took about three months after chemotherapy before my taste buds eventually returned to their usual levels.

My mother suffered from permanent loss of sense of smell and taste after a severe cold for over twenty years! She tried various remedies, joined discussion forums and…[Read more]

Hi Lois

I think it’s a great idea about providing a book with hints and tips on living with myeloma. I don’t know how you are going to organise so many different comments from all of us, but perhaps you might consider placing the suggestions under various headings such as coping with myeloma, first line treatment, stem cell transplants,…[Read more]