Myeloma Forum | KevinLavender | Activity https://forum.myeloma.org.uk/members/KevinL/activity/ Activity feed for KevinLavender. Tue, 21 Apr 2026 17:07:05 +0100 https://buddypress.org/?v=2.9.4 en-GB 30 hourly 2 0a90c7d8ebe6d7e494481d279d191652 KevinLavender started the topic Getting on with it in the forum General https://www.myeloma.org.uk/forums/topic/getting-on-with-it/ Mon, 25 Jul 2016 15:58:55 +0100 Hi all

I was diagnosed with MM in July 2012 and have since had one relapse in 2015. It was then I realised I wasn’t making the most of the times I was well so I’ve undertaken to do things I want to do – within the boundaries of my illness.

I have bought an electric mountain bike and started a tour of our country, hoping to visit places I’ve…[Read more]

]]> df0fe137e22befc4881415b02de77c8a KevinLavender replied to the topic CTD Completed - thank heavens! in the forum General http://www.myeloma.org.uk/forums/topic/ctd-completed-thank-heavens#post-93700 Thu, 18 Oct 2012 15:26:11 +0100 Hi Jean

For reasons I never understood they weren't able to use my Paraprotein levels to measure the MM and always worked on the light chains. I know this was unusual. Sorry can't be more help.

Don't be afraid to ask them the direct question about whether the levels need to be zero before SCT – sometimes they won't say unless you ask…[Read more]

]]> a85bf64b81a37d94fc264040681e1fef KevinLavender started the topic CTD Completed - thank heavens!. in the forum General http://www.myeloma.org.uk/forums/topic/ctd-completed-thank-heavens Thu, 18 Oct 2012 14:49:24 +0100 Having been diagnosed in July I have just completed three shortened cycles of CTD. My light chains and bone marrow biopsy show a return to normal and I'm booked in for stem cell harvesting on 29th October.

I wanted to share this good news with anyone who is going through the CTD and suffering from the rather random side effects – it is worth…[Read more]

]]> 5508126b129f0de044525a0141e97217 KevinLavender replied to the topic Off all treatment and feeling awful in the forum Treatment http://www.myeloma.org.uk/forums/topic/off-all-treatment-and-feeling-awful#post-100756 Thu, 18 Oct 2012 14:33:43 +0100 Nicola

I found the DEX (steriods) to be the worst of the CTD treatment. Like your Dad it seemed to be when I stopped taking them I had the most trouble. I have just finished the CTD cycles and it took a week to to start to feel normal again. Depression and anxiety were horrid side effects but they did pass after a short while.

Hope your…[Read more]

]]> 777255be31a62af91115ce33954b640a KevinLavender replied to the topic Where, what etc'. in the forum General http://www.myeloma.org.uk/forums/topic/where-what-etc#post-93498 Fri, 14 Sep 2012 16:42:54 +0100 Yes I lost my post yesterday – see if this gets through!

]]> 7fc99e99d95cd1673dea1a30f2979580 KevinLavender replied to the topic Diagnosis with no visible symptoms? in the forum General http://www.myeloma.org.uk/forums/topic/diagnosis-with-no-visible-symptoms#post-93459 Wed, 05 Sep 2012 18:24:55 +0100 Scott

Yes the treatment started within two weeks of the diagnosis.

Kevin

]]> 9f2d334114bd757540dfbf937d14eb79 KevinLavender replied to the topic Diagnosis with no visible symptoms? in the forum General http://www.myeloma.org.uk/forums/topic/diagnosis-with-no-visible-symptoms#post-93457 Wed, 05 Sep 2012 17:50:43 +0100 I was having an MRI scan for a digestive problem when a very alert analyist spotted some vertebrae appeared damaged.

This lead to an immediate referral to a consultant who having seen the blood tests warned me it appeared to be MM. There then followed a fully body scan, MRI scan of spine, and bone biopsy. These combined with the blood tests…[Read more]

]]> ac06c115363a77bf489a10f1c2d25a61 KevinLavender replied to the topic 12 months since my stem cell transplant in the forum General http://www.myeloma.org.uk/forums/topic/12-months-since-my-stem-cell-transplant/page/2/#post-93442 Wed, 05 Sep 2012 17:41:44 +0100 Thanks Michele

You're right there are other good news posts I just thought the link here gave a bit more detail and was very uplifting.

Looking forward to feeling so good again though!

Thanks for the reply –

Kevin
Sussex

]]> a3067440825283332acfb24b0272d320 KevinLavender replied to the topic 12 months since my stem cell transplant in the forum General http://www.myeloma.org.uk/forums/topic/12-months-since-my-stem-cell-transplant/page/2/#post-93440 Tue, 04 Sep 2012 12:23:06 +0100 Wendy

I found your post and link very uplifting and encouraging. I've found it hard to find anything about how I can expect to feel when I get through the CTD and Stem Cell Transplant.

Thanks

Kevin

]]> 2d6d1828f412cca7c1d48afb1671ac35 KevinLavender replied to the topic Very Stressful in the forum General http://www.myeloma.org.uk/forums/topic/very-stressful#post-93447 Tue, 04 Sep 2012 12:05:55 +0100 The waiting for the results was an awful time as we obviously didn't want to tell the rest of the family until we knew what the news was.

Try not to get too far ahead of yourself thinking about what maybe, concentrate on today and get on with that. The sleeping is a problem as I found my mind tended to race away in the early hours.

Keep as…[Read more]

]]> 86c59d5b6f1f7e535d5dedcf93206d32 KevinLavender replied to the topic Employer support? in the forum General http://www.myeloma.org.uk/forums/topic/employer-support#post-93452 Tue, 04 Sep 2012 12:01:03 +0100 My employer has been very supportive. I have been on CTD treatment for a few months and reacted badly to the Dex (steriods) preventing me attending work for over a month. My employer has said if I feel I'd be better at work come in, otherwise stay at home.

I guess it depends very much on the individual employer and perhaps the size of the…[Read more]

]]> 1559f11957a8720561da0f8dcb8c55a9 KevinLavender replied to the topic Diagnosed this week in the forum Newcomers http://www.myeloma.org.uk/forums/topic/diagnosed-this-week#post-86565 Mon, 27 Aug 2012 10:09:09 +0100 Hi Andrea

Sorry to hear your news. I too was diagnosed about the same time as you and have started the cycles of initial treatment. I am 48. As you say the whole thing is such a shock and does make you very anxious about the treatment and the future.

You will read on this forum lots of stories about people who have been through the…[Read more]

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