Hi there,

Colin was diagnosed as 56 in October 2011. I don’t think I will ever forget and neither will he. All the usual feelings of upset, anger, disbelief etc. What we have realised though is that we must be strong as a team just supporting each other. Believing it can be beater, asking questions and making sure the best treatment is…[Read more]

Hi there

Blimey they are giving you the run around. On a positive note I would have thought if mm was in the frame they might have told you in hospital? I would like to guess. There are so many illnesses with similar symptoms. It’s worth remembering that mm is an exceptional diagnosis as it’s very rare, however that said since Colin was diagnosed…[Read more]

That’s absolutely great news. These are the stories that we need. Good news encouragement stories. Enjoy this, enjoy your completely remission it’s exhilarating.

Vicki

Hi peter

Thanks for this. It’s very interesting to hear that you got better remission from the meds as opposed to the transplant! Colin only just got enough cells for his first SCT so who knows what or if he will get enough for a second. He did say he would go for it if offered.

He had a fracture of t12 in his back, thankfully his Gp was on the…[Read more]

Hi Jean

I was wondering how you and frank were doing! I’ve also been looking to see if there were any posts from Tom, Helen and Ali….hope all is ok with them. Colin’s next step is this velcade along with dex and cyclophos and see what that brings, dependant on which consultant we see, one says SCT is possible and the other says unlikely.

How…[Read more]

Hi Lynn

Yes it does come as a blow doesn’t it although you know it will happen but never think your circumstances will be early relapse. Colin had real trouble getting enough cells for one transplant. Dependant on which consultant we see, one said it was on offer the other said probably not. After last time we thought we wouldn’t go through it…[Read more]

Hi eve,

As always positive and practical. You are right you can go round in circles with this. I still believe if I look long enough I might find that cure! It must be tough right now as slim and mm were the focus. Loss of your loved one is one aspect…..doing and caring is the other. What to do now eh? Glad to hear you have family close by,…[Read more]

Dear both

Just a quick line to say you are both inspiring. As you may know Colin has relapsed. He has just started velcade, dex and cyclophos. Hope it works well and quick. Peter how long have you had mm, i get the impression you have had a few treatments twice. Do you mind me asking….. Do you feel well generally. Did you have an SCT? The big…[Read more]

Hi Maureen

He had the transplant in November 2012. Apparently his light chains started going up in February 2014 but they didn’t tell us as they thought it could be a blip so they had to wait for an upward trend! So he got nearly 2 years but really showing signs from now only.

It’s such a difficult thing to deal with because you can’t see what’s…[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]

Hello eve,

Vicki here. This is a completely late post. I just haven’t been on here. This crap disease shouldn’t be allowed. I’m so sorry to hear about slim. I have read all of the posts on the thread and everyone has said it all. Gritty is an understatement. Best wishes to you

Vicki

Hi Andy

Vicki here, not posted for ages but often thought of you all. I’ve posted our updated to Maureen’s offtopic. It’s been interesting. So pleased to hear you are doing well and your pp’s are down so low. That’s absolutely great, brilliant news! That’s great for you guys. Is there any chance of a SCT?

So pleased for you and steph. Best…[Read more]

Hi Maureen

It’s me…..by chance I logged on tonight! We have had a really tough time. Where do we start. I posted way back in July I think when Colin’s light chains started going up. That was a real blow. But Colin seemed really well! Everyone kept saying it! Anyway we decided to try and enjoy ourselves in the hope that things might go back…[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