Myeloma Forum | compass007 | Activity https://forum.myeloma.org.uk/members/compass007/activity/ Activity feed for compass007. Sat, 11 Apr 2026 09:56:29 +0100 https://buddypress.org/?v=2.9.4 en-GB 30 hourly 2 928eba462f9a95967cee378f082684b9 compass007 started the topic Allo SCT in the forum Treatment https://www.myeloma.org.uk/forums/topic/allo-sct/ Tue, 18 Apr 2017 06:53:23 +0100 I am 58 days post Allo SCT and have just recieved blood results back to see how effective the graft was….my brother was the donor, and I am 98% my brothers cells which is excellent news….still a long way to go yet, I have had mild GVHD and I cant really say the whole transplant is easy but as a fellow myeloma sufferer said its “DOABLE”…still…[Read more]

]]> 495e2a0aed55e010368509baa3cb4c45 compass007 started the topic Allo SCT in the forum Treatment https://www.myeloma.org.uk/forums/topic/allo-sct/ Tue, 18 Apr 2017 06:53:23 +0100 I am 58 days post Allo SCT and have just recieved blood results back to see how effective the graft was….my brother was the donor, an I am 98% my brothers cells which is excellent news….still a long way to go yet, I have had mild GVHD and I cant really say the whole transplant is easy but as a fellow myeloma sufferer said its “DOABLE”…still…[Read more]

]]> 4afcce065b0be9c149ae18be63c8b133 compass007 replied to the topic Bendamustine in the forum Treatment https://www.myeloma.org.uk/forums/topic/bendamustine-2/#post-132820 Tue, 04 Apr 2017 06:57:20 +0100 Ask about IXAZOMIB relativley new drug recently aproved in UK…however not sure about the drug with the kidney condition, but certainly wort asking about.

 

Good Luck

 

Les

]]> 35d7c37d47c5a0f3d303842f58a06e97 compass007 replied to the topic Family support....advice please! in the forum General https://www.myeloma.org.uk/forums/topic/family-support-advice-please/#post-132819 Tue, 04 Apr 2017 06:49:59 +0100 Hi I really think Mcmillan is your very best starting point…..this sounds daunting to most, but they really are fantastic and give great support…

 

Kind Regards

 

Les

]]> 82e38086238971879ed7c89e53833e61 compass007 replied to the topic SCT Not Good Started New Trial Drug IXAZOMIB in the forum Treatment https://www.myeloma.org.uk/forums/topic/sct-not-good-started-new-trial-drug-ixazomib/#post-129229 Fri, 19 Aug 2016 10:20:20 +0100 Hi Peter only coming back to you now as I wanted to speak with my consultant Dr Kishore and team at Heartlands regarding MM being Curable or not…upto 6 weeks ago it was my assumption that MM was not curable after looking at all the information available I would say that is a pretty fair assumption…However after talking to the team at…[Read more]

]]> 0e46953a01b03d7338a77df334371436 compass007 replied to the topic Relapsed just as finishing cyle 6 of initital treatment! in the forum Newcomers https://www.myeloma.org.uk/forums/topic/relapsed-just-as-finishing-cyle-6-of-initital-treatment/#post-129205 Thu, 18 Aug 2016 06:38:00 +0100 A clip from the Myeloma UK site….

Pharmaceutical company Takeda are also going to appeal the CHMP decision. During this period, Takeda will continue to make ixazomib available to eligible UK patients through a compassionate use programme (CUP).

This means that if a myeloma patient requires treatment with ixazomib, recommended by their doctor,…[Read more]

]]> 147891927e698f676c362d03fe47533f compass007 replied to the topic SCT Not Good Started New Trial Drug IXAZOMIB in the forum Treatment https://www.myeloma.org.uk/forums/topic/sct-not-good-started-new-trial-drug-ixazomib/#post-129204 Thu, 18 Aug 2016 06:07:27 +0100 Hi Helen and Suzie just to let you know my consultant told me that as Ixazomib is non EU aproved and that the drug Company is trying to get it aproved so it is cheap (which would make sense) Im not sure how good it is yet as I have had just the one cycle, as I said in my last comment I caught a cold then got a fever and had to stop the treatment…[Read more]

]]> 21f0151b1f738c1f48e92d32d4adf588 compass007 replied to the topic Relapsed just as finishing cyle 6 of initital treatment! in the forum Newcomers https://www.myeloma.org.uk/forums/topic/relapsed-just-as-finishing-cyle-6-of-initital-treatment/#post-129193 Wed, 17 Aug 2016 05:44:24 +0100 I have been diagnosed about 12 months now and unfortunatley we are always fire fighting I started on velcade but it didnt work for me ….I thent went on and had CHOP chemo and the finally DT-PACE chemo that got me into remission..I then went on and had Stem Cell Transplant at Heartlands the remission lasted about 3 months which is pretty crap so…[Read more]

]]> 1716f3a0172994e223c4ca0465904e59 compass007 replied to the topic SCT Not Good Started New Trial Drug IXAZOMIB in the forum Treatment https://www.myeloma.org.uk/forums/topic/sct-not-good-started-new-trial-drug-ixazomib/#post-129192 Wed, 17 Aug 2016 05:26:24 +0100 Just a quick update caught a cold a couple of weeks ago needless to say that turned into a fever and eventually i was hopitalized for 5 days found out it was my Hickman line that was contaminated so they took it out all fine now and im back at home, however I had to stop the new drug treatment Ixazomib for a week doesnt seem to have had any…[Read more]

]]> 7a076d65d4138ad87753adab9790fcdc compass007 replied to the topic SCT Not Good Started New Trial Drug IXAZOMIB in the forum Treatment https://www.myeloma.org.uk/forums/topic/sct-not-good-started-new-trial-drug-ixazomib/#post-128849 Tue, 19 Jul 2016 12:41:26 +0100 Well after only 6 days my plasmacytoma in the right eye is all but gone I know that is not really a medical measurement for success or failure but I would have to say it must be a fairly good sign not seeing my consultant for over a week so wont really know anything till then, Im going to see a radiotherapist tomorrow not sure if its for treatment…[Read more]

]]> cd33fb4d440cbb228a68ff1be8109fa2 compass007 replied to the topic SCT Not Good Started New Trial Drug IXAZOMIB in the forum Treatment https://www.myeloma.org.uk/forums/topic/sct-not-good-started-new-trial-drug-ixazomib/#post-128811 Thu, 14 Jul 2016 16:43:37 +0100 I should of said a drug thats not  approved by the EU, but with whats happening with the UK and EU should I really care?

]]> 0000be1bab3ca3f89af34773f2849a29 compass007 started the topic SCT Not Good Started New Trial Drug IXAZOMIB in the forum Treatment https://www.myeloma.org.uk/forums/topic/sct-not-good-started-new-trial-drug-ixazomib/ Thu, 14 Jul 2016 16:40:13 +0100 Hi alll Im back again… Good news is SCT went fantastic like I said a “BREEZE” unfortunatley it only lasted about 2 days. ha ha ha, I know I shouldnt laugh…. but its just my humour, after the and during SCT  I started getting some back pain I was due a Pet scan and bone marrow biopsy to check if SCT had worked… I got the all clear nothing in…[Read more]

]]> 94c0b2488fcc5150e36eecbfeab1be0e compass007 replied to the topic after sct in the forum Treatment http://www.myeloma.org.uk/forums/topic/after-sct-3/#post-127677 Wed, 20 Apr 2016 05:48:47 +0100 Hi Jan your description is very much like the pain I am getting, infact I went to clinic yesterday and after an MRI scan last week it is showing damage to the vertebrae, im taking co-codemal and a morphine sulphate capsule at night it certainly takes the edge of the pain, again im not sure how much effect the SCT has had yet and I am back at…[Read more]

]]> 4ee6f7d8e3c6212d7b1dfaf7479e50e3 compass007 started the topic after sct in the forum Treatment http://www.myeloma.org.uk/forums/topic/after-sct-3/ Sun, 17 Apr 2016 08:47:45 +0100 I had my sct about 3 weeks ago before I had it I had very little pain but since the sct the pain across my shoulders has bee very intense, im taking co-codemal and oramorph and it is certainly helping also I have had a skin rash but the Drs have said its not shingles and is probably faculitus? has anyone else out there had these symptoms/pain…[Read more]

]]> 3520a73829d04daf83e35aa113ab00e0 compass007 replied to the topic 3 weeks after SCT in the forum Treatment http://www.myeloma.org.uk/forums/topic/3-weeks-after-sct/#post-127532 Fri, 08 Apr 2016 05:54:43 +0100 Hi Rebecca, thanks for the reply that does sound very much like what I am going through, and like I said I am generally an up beat person anyway, and like they all say “one day at a time” thanks again for your reply…very re-assuring.

 

Regards

 

Les

]]> 30a3ee8c74c8d8834e25a952af7c507c compass007 started the topic 3 weeks after SCT in the forum Treatment http://www.myeloma.org.uk/forums/topic/3-weeks-after-sct/ Thu, 07 Apr 2016 06:49:52 +0100 Ok its been 3 weeks since my SCT and although all seem to have went well I am getting quite a lot of pain in my shoulders and the tops of my arms, I am getting the feeling that the SCT may not have worked…..I had a PET scan prior to the SCT and am due another soon, because the Myeloma presented itself aggresivley through a tumour behind my eye…[Read more]

]]> aeb90b3e9f3b4fa0603e11186fff9b73 compass007 replied to the topic SCT in the forum Treatment http://www.myeloma.org.uk/forums/topic/sct-6/page/2/#post-127381 Tue, 22 Mar 2016 13:27:55 +0000 Well SCT done and out in only 14 days…I feel very lucky, I had no real problems a few mouth ulcers and feeling very sick, However the boredom as i thought was my biggest problem, when you are told isolation thats exactly what they mean, even my food was served through a hatch, but like I said I feel very lucky that I got through it without any…[Read more]

]]> f541dc3071472c4ed0e191ddd37f6fea compass007 replied to the topic SCT in the forum Treatment http://www.myeloma.org.uk/forums/topic/sct-6/#post-127115 Mon, 07 Mar 2016 07:04:42 +0000 Hi Sonia, and yes I have the same feeling, However we sometimes forget about the partners of the sufferes who are also suffering (sometimes more).

 

Hope all goes well.

 

Kind Regards

 

Les

]]> a7a81937cb9fc7c2d7c7f8f75847cac5 compass007 replied to the topic SCT in the forum Treatment http://www.myeloma.org.uk/forums/topic/sct-6/#post-127114 Mon, 07 Mar 2016 07:01:29 +0000 Thanks David the recovery and problems going through treatment does seem to vary a lot, as I had DT-PACE chemo which is very powerful I am hoping that this eases the problems with the Melphalan, but I know each individual is different.  Thanks for your advice….this really does help.

 

Kind Regards

 

Les

]]> 8a8a62ac0af759dbbca836a5b689a2cd compass007 replied to the topic SCT in the forum Treatment http://www.myeloma.org.uk/forums/topic/sct-6/#post-127093 Fri, 04 Mar 2016 06:58:11 +0000 Thank-you Jan that is very reassuring

Regards

 

Les

]]> 970c10abca3547f1602435e4a7c82440 compass007 replied to the topic SCT in the forum Treatment http://www.myeloma.org.uk/forums/topic/sct-6/#post-127056 Wed, 02 Mar 2016 10:19:10 +0000 Hi David, thats a great way to put it, although like I said I am a little aprehensive about the SCT I am generally a positive person and have a “what will be will be” attitude, I am quite young and quite strong, so I hope that will play to my advantage, However I am also mindful of the fact that this cancer doesnt care about age, I know of people…[Read more]

]]> 284cf061975643cb48f47c36a4d5719a compass007 replied to the topic SCT in the forum Treatment http://www.myeloma.org.uk/forums/topic/sct-6/#post-127052 Wed, 02 Mar 2016 07:58:20 +0000 Hi Jan and thanks for the best wishes…my message may be a little confusing, it was my PET scan that I had at the QE Birmingham on Saturday the SCT treatment is at Birmingham Heartlands, although my consultant is Dr Wandroo at Sandwell, who I think is fantastic (and his team), I tried Velcade for my first Chemo treatment but it didnt work for me,…[Read more]

]]> 5c5d2a702b970fceaaf9edd31947790e compass007 replied to the topic SCT in the forum Treatment http://www.myeloma.org.uk/forums/topic/sct-6/#post-127016 Sun, 28 Feb 2016 10:21:03 +0000 Hi nickyr can I ask what Chmo you had prior to the SCT, I wish you well with your remision.

]]> cb2b29a34dbe1ed4ae3634b6356381d5 compass007 replied to the topic SCT in the forum Treatment http://www.myeloma.org.uk/forums/topic/sct-6/#post-127015 Sun, 28 Feb 2016 10:10:41 +0000 Hi thanks for the reply I am 50 and I hope I get to the remission you have its quite confusing as to why some can get only a few months and others over ten years right now i would be thrilled with somwhere inbetween but I know that may not be possible but like I said I am quite a positive person and of course I have hope…….

]]> 24bf486daf3a1da078121e9c1d2aa73c compass007 started the topic SCT in the forum Treatment http://www.myeloma.org.uk/forums/topic/sct-6/ Fri, 26 Feb 2016 06:53:23 +0000 Ok my cells have been harvested all went well I have enough for 2 lots of SCT if needed the date is booked for 7th March for the actuall treatment, I had a lung function test last week, and have a PET scan booked for this Saturday morning at the QE Birmingham, I have had lots of scans and x-rays CT scans MRI scans but not a PET scan apparently…[Read more]

]]> 51beae38c8eca34f7e755894601698e9 compass007 replied to the topic Recently Diagnosed in the forum Newcomers http://www.myeloma.org.uk/forums/topic/recently-diagnosed-2/#post-125495 Sat, 19 Dec 2015 08:02:08 +0000 Thanks for your advise very helpful, sorry for the late reply as I am back in hospital now, and typing from an I phone so please excuse grammar and spelling, having an enhanced course of chemo that has gone a little wrong, when I came in the did a central line procedure that went fine and I was to have 2 x 24hrs packs of chemo after the first…[Read more]

]]> 12230e330b7c076f09438717cd7a002d compass007 replied to the topic Recently Diagnosed in the forum Newcomers https://www.myeloma.org.uk/forums/topic/recently-diagnosed-2/#post-125372 Mon, 14 Dec 2015 05:01:29 +0000 Thank-you for your reply I am generally an up beat person and this may sound a bit wierd but after the last 8 months Ive had not really knowing….the diagnosis has given me some sort of relief/closer perhaps not the right words….however I do fully understand the situation and how it can affect one person completely different to another, well I…[Read more]

]]> 53315163a4370a16492c5c4fe746adc7 compass007 started the topic Recently Diagnosed in the forum Newcomers http://www.myeloma.org.uk/forums/topic/recently-diagnosed-2/ Sun, 13 Dec 2015 05:28:58 +0000 Hi I am a 50 year old male and have just been diagnosed with Mutiple Myeloma it all started some 6-8 months ago when I went to hospital and had to have fluid drained off my right lung, I then had some xrays and a scan where they found a tumour on my right kidney at this point I was told I had cancer that had probably spread to the lung, however…[Read more]

]]> 2e169341113f0dbd3165fd90835b3d94 compass007 became a registered member https://forum.myeloma.org.uk/activity/p/42195/ Sun, 13 Dec 2015 04:49:59 +0000 0