Myeloma Forum | Rosie 1961 | Activity https://forum.myeloma.org.uk/members/rosie1961/activity/ Activity feed for Rosie 1961. Tue, 14 Apr 2026 14:35:36 +0100 https://buddypress.org/?v=2.9.4 en-GB 30 hourly 2 62f8a90c23db75f462358869d51dac07 Rosie 1961 started the topic New study in the forum General https://www.myeloma.org.uk/forums/topic/new-study/ Mon, 16 Apr 2018 11:20:24 +0100 Big investment in research. As someone diagnosed with MGUS (lost my dad after 15 years with Myeloma last year), this is very interesting

http://markets.businessinsider.com/news/stocks/stand-up-to-cancer-takes-new-approach-to-multiple-myeloma-focusing-on-precursor-conditions-1021380091

 

]]> 13c27cdbc1ab2ea08e2b1285b8e3978e Rosie 1961 replied to the topic My Dad Passed Away in the forum End of Life and Grief https://www.myeloma.org.uk/forums/topic/my-dad-passed-away/#post-136532 Tue, 26 Dec 2017 15:58:26 +0000 Dear Clover, my thoughts are with you at this time. My dad died on 5 Dec after many years with Myeloma.

I hope that you are able to find peace, but it is early days and it’s ok to grieve. Give yourself time.

 

]]> 767da3b510c5595c534dbacac894fff6 Rosie 1961 started the topic Dad’s story in the forum End of Life and Grief https://www.myeloma.org.uk/forums/topic/dads-story/ Sun, 10 Dec 2017 17:26:14 +0000 Dad passed away this week. He was 82 and was diagnosed with MM almost 15 years ago. At the time he was fit and healthy.

At that time SCT was not offered but he had all the other treatments. He was able to remain fairly active until the last year.

At the end he had pneumonia and his body could not fight the infection. He knew this and was ready…[Read more]

]]> 5da7a0117943ae8cdfc362606de5be66 Rosie 1961 started the topic Very swollen leg in the forum General https://www.myeloma.org.uk/forums/topic/very-swollen-leg/ Thu, 09 Nov 2017 05:10:54 +0000 My dad was diagnosed with MM 14 years ago, aged 68. He heasn’t had any transplants but all the usual treatments over the years to keep him going.

2 months ago his whole leg swelled from his foot (like a balloon) to the top and he was told it was DVT and has been treated for that. It has been very painful and he was told it could take 3 months t…[Read more]

]]> 72cc8fbe1cde377d109e7c0ba460d3bd Rosie 1961 replied to the topic Family support....advice please! in the forum General https://www.myeloma.org.uk/forums/topic/family-support-advice-please/#post-132711 Tue, 28 Mar 2017 04:51:42 +0100 Is there a local Carers group? There is one in my local borough and I know they are very supportive in lots of ways.

]]> 39cf4d627d97923694d3e5f5893dcde5 Rosie 1961 replied to the topic MGUS diagnosis - but doesn't explain my symptoms in the forum Smouldering myeloma / MGUS https://www.myeloma.org.uk/forums/topic/mgus-diagnosis-but-doesnt-explain-my-symptoms/#post-131208 Sun, 11 Dec 2016 09:13:50 +0000 One of the reasons I was tested for MM was because my dad has it and I was getting pins and needles. It turned out my B12 was low and since having B12 injections the pins and needles have gone. There seems to be a link with B12 and MGUS.

I was diagnosed MGUS, my pp levels are very low. But I do still have some strange feelings in my legs at…[Read more]

]]> 0d144288b44bdbcfa1fab6b686882370 Rosie 1961 replied to the topic Children checked for this awful disease! in the forum General http://www.myeloma.org.uk/forums/topic/children-checked-for-this-awful-disease/#post-122708 Sun, 21 Jun 2015 15:44:43 +0100 Hi Val, my dad has MM and I have recently been diagnosed MGUS (I’m 54). I’m not too worried, I just see it as a potential early warning system.

]]> d7f61dbd757311a519c43ebfcadbb5e9 Rosie 1961 replied to the topic Husband recently diognosed in the forum Newcomers http://www.myeloma.org.uk/forums/topic/husband-recently-diognosed/#post-121315 Wed, 18 Mar 2015 06:28:44 +0000 I had tingling in my hands/arms/legs  and randomly all over my body. This turned out to be B12 deficiency and since the jabs it has gone away. Along the way I was diagnosed with MGUS. The possible B12/MM link is very interesting.

]]> 3c398e75883e6691445aeafdb171bad1 Rosie 1961 replied to the topic Heartbroken that he's gone in the forum End of Life and Grief http://www.myeloma.org.uk/forums/topic/heartbroken-that-hes-gone/page/2/#post-121277 Sat, 14 Mar 2015 10:24:43 +0000 My heart goes out to those of you who have lost loved ones so young, especially with little children. I have come across Child Bereavement UK through my work  and know that they are sometimes able to offer support to families.

]]> 6d01d85e444ab4458913c109a8636e30 Rosie 1961 replied to the topic Waiting and worrying about diagnosis in the forum Newcomers http://www.myeloma.org.uk/forums/topic/waiting-and-worrying-about-diagnosis/page/2/#post-121246 Wed, 11 Mar 2015 19:01:00 +0000 Thanks Helen and Keith. Best wishes to both of you – I will keep checking in!

]]> 4988a106fa223fb02855bfb8100aa23f Rosie 1961 started the topic B12 and MM in the forum General http://www.myeloma.org.uk/forums/topic/b12-and-mm/ Tue, 10 Mar 2015 21:46:32 +0000 I read a study that said 17% of people diagnosed with MM have B12 deficiency. I just wondered about people’s experiences here.

]]> 02c54f9966ea5e303cfde6efcc67dd54 Rosie 1961 replied to the topic Waiting and worrying about diagnosis in the forum Newcomers http://www.myeloma.org.uk/forums/topic/waiting-and-worrying-about-diagnosis/page/2/#post-121217 Tue, 10 Mar 2015 21:33:25 +0000 I saw the Dr today. All my x rays were clear and I’m officially MGUS. M spike was 6g/l . They will see me again in 6 months.

The B12 jabs have cured my tingling, but I am still getting random cold patches. They suggested asking the GP to refer me to neurology.

Thanks to all for your support on here 🙂

]]> deb6a0c1a5624122d78eb165d1c50647 Rosie 1961 replied to the topic Both parents diagnosed - their consultants never come across it before!! in the forum General http://www.myeloma.org.uk/forums/topic/both-parents-diagnosed-their-consultants-never-come-across-it-before/#post-121028 Fri, 27 Feb 2015 21:04:27 +0000 Hi Jaxx. What can I say? Im so sorry to hear of your loss. I hope you have family and/or friends around you to support you.

Love Rosie x

]]> a93fb96a778f251acb6804ff9f848cd1 Rosie 1961 replied to the topic Waiting and worrying about diagnosis in the forum Newcomers http://www.myeloma.org.uk/forums/topic/waiting-and-worrying-about-diagnosis/page/2/#post-121002 Thu, 26 Feb 2015 11:36:18 +0000 How are you feeling today? Is it worth asking for the appt they offered you on 9 March?

]]> 5a2544271692cac5a4b5bd0b0a6d342e Rosie 1961 replied to the topic Waiting and worrying about diagnosis in the forum Newcomers http://www.myeloma.org.uk/forums/topic/waiting-and-worrying-about-diagnosis/page/2/#post-121001 Thu, 26 Feb 2015 11:35:10 +0000 I didn’t but I had to swear that I wasn’t pregnant (would be a miracle in more ways than one!) and sign a form 🙂

]]> 7aa14db4f5124adfd631f75bc33e07a5 Rosie 1961 replied to the topic Need to let off steam before my appointment in the forum Smouldering myeloma / MGUS http://www.myeloma.org.uk/forums/topic/need-to-let-off-steam-before-my-appointment/#post-120991 Wed, 25 Feb 2015 21:45:04 +0000 Oh no-what an absolute pain!!!  I hope you can soon get the test done.

R x

]]> da585c2ba3078eea8f3d9d104ce69054 Rosie 1961 replied to the topic Waiting and worrying about diagnosis in the forum Newcomers http://www.myeloma.org.uk/forums/topic/waiting-and-worrying-about-diagnosis/page/2/#post-120975 Wed, 25 Feb 2015 15:01:08 +0000 Hi Helen, hope everything goes ok for you today. I saw the haemotologist. She sent me for full skeletal x rays. She will review those with my bloods/MRIs with her team next week. I see her again on 10 March.

]]> 4a1bdb38a041c21d5f737c0fb3c0585a Rosie 1961 replied to the topic Waiting and worrying about diagnosis in the forum Newcomers http://www.myeloma.org.uk/forums/topic/waiting-and-worrying-about-diagnosis/page/2/#post-120825 Fri, 13 Feb 2015 21:24:57 +0000 The GP surgery called today. They have checked the bloods ordered by the haemotologist. The only one that was highlighted as abnormal was the spep, showing the same result as before – small monoclonal band. It’s a relief that the tests did not show anything else.

 

Will see what haemotologist says on 25th and wait for MRI.

 

My leg is still…[Read more]

]]> ff7edcf54ae9711f58dbcb0401b1f218 Rosie 1961 replied to the topic Very ill, IgG kappa elevated, could it be myeloma? in the forum Newcomers http://www.myeloma.org.uk/forums/topic/very-ill-igg-kappa-elevated-could-it-be-myeloma/#post-120692 Sun, 08 Feb 2015 11:12:44 +0000 Hi Eva, have you had your thyroid and B12 checked as both of these affected me quite badly (especially when I was hyperthyroid)

]]> 8981bec2fd10acb00bd845a0dd91c50c Rosie 1961 replied to the topic Very ill, IgG kappa elevated, could it be myeloma? in the forum Newcomers http://www.myeloma.org.uk/forums/topic/very-ill-igg-kappa-elevated-could-it-be-myeloma/#post-120687 Sun, 08 Feb 2015 09:54:00 +0000 Is it worth asking your GP to run the Bence Jones urine test while you wait to see the haemotologist?

]]> 41257e66c1190edacf764aa87906c22a Rosie 1961 replied to the topic Very ill, IgG kappa elevated, could it be myeloma? in the forum Newcomers http://www.myeloma.org.uk/forums/topic/very-ill-igg-kappa-elevated-could-it-be-myeloma/#post-120685 Sun, 08 Feb 2015 09:41:08 +0000 Hi Eva, I’m afraid I can’t answer your question about the bloods. But I understand your frustrations. It sounds like you have been waiting for answers a long time whilst feeling so ill.

My dad has myeloma and I have been getting random symptoms for a few months. Apart from feeling tired I don’t have any major symptoms but it’s still hard to deal…[Read more]

]]> 8e0043baa9dc044cd8531b9e052f066b Rosie 1961 replied to the topic Waiting and worrying about diagnosis in the forum Newcomers http://www.myeloma.org.uk/forums/topic/waiting-and-worrying-about-diagnosis/page/2/#post-120668 Sat, 07 Feb 2015 10:04:18 +0000 Unfortunately some medics just see people as pieces of meat. I also think when they can’t cure it they just don’t know what to say. Horrendous for that poor guy.

I recently had head/neck MRI as they were concerned about the tingling in my arms and hands. Although ordered by nhs it was at a very local private clinic. I was more scared of the…[Read more]

]]> 3896f5bf72563d0fbd3d114a2ff94557 Rosie 1961 replied to the topic Waiting and worrying about diagnosis in the forum Newcomers http://www.myeloma.org.uk/forums/topic/waiting-and-worrying-about-diagnosis/page/2/#post-120666 Sat, 07 Feb 2015 08:14:13 +0000 Hi Helen, hope the new consultant has better people skills. These things are so important. Will definitely be thinking of you on 25th Feb.

Saw my GP yesterday evening and she is sending me for a lower spine MRI to see if anything there is causing the cold leg. It’s a mystery!

]]> a4bfa1e8913f80f687edf03824da0cce Rosie 1961 replied to the topic Waiting and worrying about diagnosis in the forum Newcomers http://www.myeloma.org.uk/forums/topic/waiting-and-worrying-about-diagnosis/#post-120655 Fri, 06 Feb 2015 08:25:33 +0000 I have my haemotologist appt on 25 Feb. They have requested bloods before that, spep, igs and b2m, so at least I know they are being thorough.

The B12 jabs seem to have stopped the tingling but I’m still getting one cold leg at night, with some other random  cold patches!

]]> ae097f1bd8a2b170f33519436fd184e2 Rosie 1961 replied to the topic Waiting and worrying about diagnosis in the forum Newcomers http://www.myeloma.org.uk/forums/topic/waiting-and-worrying-about-diagnosis/#post-120410 Mon, 19 Jan 2015 19:59:08 +0000 I finally got the Bence Jones result today, it was normal 🙂

I also had a private SFLC assay that was also within normal range. The GP is referring me to the heamotologist so I will be able to discuss the implications of the original blood test that showed the monoclonal band.

 

]]> 01d4a27c0ccf59f593f2e3243fb2b687 Rosie 1961 replied to the topic Waiting and worrying about diagnosis in the forum Newcomers http://www.myeloma.org.uk/forums/topic/waiting-and-worrying-about-diagnosis/#post-120230 Thu, 08 Jan 2015 10:06:02 +0000 Thanks so much for your support 🙂

]]> 563568d832f51d793fa4052491039080 Rosie 1961 replied to the topic Waiting and worrying about diagnosis in the forum Newcomers http://www.myeloma.org.uk/forums/topic/waiting-and-worrying-about-diagnosis/#post-120188 Wed, 07 Jan 2015 11:24:07 +0000 Hi, MRI is all done. The results will be sent to the hospital in 4-5 days.

Just had a call from GP about the bence jones test. Apparently the hospital lab has run out of the necessary agent and they won’t have more until the end of next week. That is not good!!

]]> a9ddbea8eb3078af90e2dc387d214a57 Rosie 1961 replied to the topic Waiting and worrying about diagnosis in the forum Newcomers http://www.myeloma.org.uk/forums/topic/waiting-and-worrying-about-diagnosis/#post-120159 Sun, 04 Jan 2015 09:51:48 +0000 Thanks C and K for your reassurance. I have an MRI of head/neck on Wed as I have no bone pain but have been getting some random tingling (possibly due to my B12 deficiency) and my other strange symptom

which is one cold leg, mainly in the morning! At least it is all being investigated.

 

]]> 8c585d2c2f5a384bd49c76a203ef5cc4 Rosie 1961 replied to the topic Waiting and worrying about diagnosis in the forum Newcomers http://www.myeloma.org.uk/forums/topic/waiting-and-worrying-about-diagnosis/#post-120154 Sat, 03 Jan 2015 20:04:22 +0000 Hi Keith

Thanks for asking. Yes I saw the GP. No real answers, she played down the result of the blood test. Urine test result not back.

She  said she will refer me to haematology so they can review all results together, so more waiting. I suspect I may be asked to repeat the urine test but we will see!

I feel a bit calmer and know I just have…[Read more]

]]> 8e56312eb51160690029e82ea67be9e3 rosie1961's profile was updated https://forum.myeloma.org.uk/activity/p/36943/ Wed, 31 Dec 2014 10:31:20 +0000 0 1c5bb511e81e485158aafe4f7b9f7585 rosie1961 started the topic Waiting and worrying about diagnosis in the forum Newcomers http://www.myeloma.org.uk/forums/topic/waiting-and-worrying-about-diagnosis/ Wed, 31 Dec 2014 10:21:45 +0000 Hi

This is my first post. My dad has MM, he was diagnosed at 68 and is now 79.

I’m 53 and following a range of unusual symptoms asked my dr to test for MM.

She ran the blood test and I didn’t hear anything. Then on 23 Dec I was asked to provide an early morning urine sample so they could do the Bence Jones test. The paperwork noted that the…[Read more]

]]> a7d36eb026a3fb701764c16e1c9c7922 rosie1961 became a registered member https://forum.myeloma.org.uk/activity/p/36941/ Wed, 31 Dec 2014 10:15:22 +0000 0