Myeloma Forum | dino | Activity https://forum.myeloma.org.uk/members/dino/activity/ Activity feed for dino. Wed, 29 Apr 2026 12:25:59 +0100 https://buddypress.org/?v=2.9.4 en-GB 30 hourly 2 b7548000224993496efdf21dfbdeb82b dino replied to the topic SCT very soon in the forum Treatment http://www.myeloma.org.uk/forums/topic/sct-very-soon/page/4/#post-125332 Wed, 09 Dec 2015 22:01:07 +0000 Im out and at home. Didnt expect the do’s and dont’s though. Big no no for lots of foods I like and no alcohol. Tablets for up to 9 months.

Still home and had a home cooked meal – absolutely brill.

How about you Louis any ideas on escape date?

 

]]> 8365248167676e3c22bea4760e839f78 dino replied to the topic SCT very soon in the forum Treatment http://www.myeloma.org.uk/forums/topic/sct-very-soon/page/4/#post-125325 Tue, 08 Dec 2015 18:28:37 +0000 not sure what happened but submitted blog today which did not take.

Sa and Sun bad days neutraphils in my boots. Monday they were 0.38 and a step change in my demeanour. Today 0.96 and I went off he ward without a mask. If they trend p on tomorrows results then I am going home tomorrow.

Scary about what not to eat for 3 months, no Brie or…[Read more]

]]> df37e66bc809b060df9cb8e72e62067a dino replied to the topic SCT very soon in the forum Treatment http://www.myeloma.org.uk/forums/topic/sct-very-soon/page/3/#post-125314 Sun, 06 Dec 2015 17:06:40 +0000 lll, looks like I may be back in land of living. as neutrafils got low I crashed physically. that , being sick, having runs and not eating pretty ba. systolic hit 98 through lack of hydration. yesterdays count was 0.01 and today 0.05. foo diabolical when ou are down anyway and a sore thrat does nothing. Thought sickness had gone and Tina came in…[Read more]

]]> 08e98595640dea03fb5f20fa804a2f2d dino replied to the topic SCT very soon in the forum Treatment http://www.myeloma.org.uk/forums/topic/sct-very-soon/page/3/#post-125256 Wed, 02 Dec 2015 10:07:10 +0000 Louis, Tina always says we pay for things in life – well, other than lack of sleep or vivid dreams this morning at 6am obs I threw up again followed by 3 bouts on the loo all before 8.30. But watching the cars on the road between bouts sort of helped.

Waiting for Tina to arrive and low/behold another accident on A14 which she is stuck…[Read more]

]]> acf73fb1b04025f1296164acd6929a4a dino replied to the topic SCT very soon in the forum Treatment http://www.myeloma.org.uk/forums/topic/sct-very-soon/page/3/#post-125235 Tue, 01 Dec 2015 16:03:01 +0000 Had a room change yeserday moving 4 floors closer to my maker. Views are over fields facing Haverhill. Alos means I can get undressed without closin the blinds and turning light out. Had a Eureka moment where I have had 3 bowel movements after waiting 6 days, talk about luxury. May also stop the sickness.

have drunk a small/ lucozade an the very…[Read more]

]]> 39a95e9fca0e8dfcdef9516e1f9d83ec dino replied to the topic SCT very soon in the forum Treatment http://www.myeloma.org.uk/forums/topic/sct-very-soon/page/2/#post-125168 Sun, 29 Nov 2015 21:41:36 +0000 Louis, been a bit of a sleepy 2 days along with bile and foam coming up. Food is not great made worse by not tasting anything correctly. I am still allowed out as NY cells have not reached neutropenic and allowed a window open. Everything is according to plan. Trying lucozade a tiny bits or marsbars tonight. Feeling tired and now getting light…[Read more]

]]> 0d9a13bae4d18e20904646b0b99b9646 dino replied to the topic SCT very soon in the forum Treatment http://www.myeloma.org.uk/forums/topic/sct-very-soon/page/2/#post-125163 Fri, 27 Nov 2015 20:24:20 +0000 I have to corroborate what Andrewr stated that reading support on here mean’s I am not the only one going through this.

Melanie asked the docs what the score is, we are each different in the disease, treatment and body make up, they are best placed.

Managed soup and roll yesterday and also today along with chicken and jacket spud. Trying get the…[Read more]

]]> c4222e446cb09144816c31d031434ac6 dino replied to the topic SCT very soon in the forum Treatment http://www.myeloma.org.uk/forums/topic/sct-very-soon/page/2/#post-125139 Thu, 26 Nov 2015 14:48:26 +0000 Don’t know what happened last couple of days but very little yesterday as I kept being sick. Docs saying to nearly for the Mephalan and are the anti sickness drugs working – does a falling trees make a noise if you are not there?

So the cells went back yesterday and they tasted of tin tomatoes. My wife Tina missed it because the ward signs barred…[Read more]

]]> 9bbf2222a43ce14aa67a28d753fe4981 dino replied to the topic SCT very soon in the forum Treatment http://www.myeloma.org.uk/forums/topic/sct-very-soon/#post-125122 Wed, 25 Nov 2015 10:55:48 +0000 Thanks Mike I will keep posting but how vivid not sure.

Chemo in yesterday pm and Shepard’s pie tea time – bad move. Talking on big white phone through the night. If you suffer sickness make sure you tell the nurses as they have lots of various anti sickness drugs. In fact any issues let them know. Share Share Share it really helps.

Dry toast…[Read more]

]]> d85253555b958db973da1628158ec093 dino changed their profile picture https://forum.myeloma.org.uk/activity/p/41987/ Tue, 24 Nov 2015 17:39:39 +0000 0 284990df51d9a84cc047fbd98f344fcd dino changed their profile picture https://forum.myeloma.org.uk/activity/p/41986/ Tue, 24 Nov 2015 17:38:45 +0000 0 b2440de63db10411aaf706833821af40 dino changed their profile picture https://forum.myeloma.org.uk/activity/p/41985/ Tue, 24 Nov 2015 17:38:01 +0000 0 7d890dedb542434c4642a524a3ae03aa dino posted an update: 2.5 hrs into having chemo - dizzy spells and now tingling in fingers https://forum.myeloma.org.uk/activity/p/41984/ Tue, 24 Nov 2015 17:34:56 +0000 2.5 hrs into having chemo – dizzy spells and now tingling in fingers

]]> 0 aa9fae3b7bd9129dfc0ea732c8509bd6 dino replied to the topic SCT very soon in the forum Treatment http://www.myeloma.org.uk/forums/topic/sct-very-soon/#post-125109 Tue, 24 Nov 2015 11:03:08 +0000 Louis good luck for tomorrow.

I am having Mephalan this afternoon and the stem cells 24 hrs later. I guess this is the least positive I have been throughout the Myeloma journey. Not worried about the chemo as I just ha be to get on with it. The scary bit is hoping the cells take. Trying to climb over this obstacle in my head but it is…[Read more]

]]> bc81946e0c5fe3241db67d2d25b89d05 dino replied to the topic SCT very soon in the forum Treatment http://www.myeloma.org.uk/forums/topic/sct-very-soon/#post-125098 Mon, 23 Nov 2015 22:12:24 +0000 So now at addenbrookes having been assigned a bed.

This is it, I assume I wait for the doctor tomorrow and then start the chemo. Looking forward to the next 3weeks in a perverse way.

]]> 97224011058e3d4b634dadd55c7e296f dino replied to the topic SCT very soon in the forum Treatment http://www.myeloma.org.uk/forums/topic/sct-very-soon/#post-125078 Sun, 22 Nov 2015 20:54:27 +0000 David, 2 years sounds a longtime. Would you mind explaining whetehr you were in remission at SCT and the PP count etc? I am at zero PP and feel great. The only reason to go SCT is to increase the avg 18 month remission.

]]> c967525e4ab1af8b09dc7380303ddefe dino replied to the topic SCT very soon in the forum Treatment http://www.myeloma.org.uk/forums/topic/sct-very-soon/#post-125076 Sun, 22 Nov 2015 20:26:22 +0000 Andrew

15 years hat is absolutely brilliant and now gives me a new goal.

Can you explain what you mean by memory fades? Do you mean memroy loss or you forget how bad the first one was?

Transpiresthebed allocated did not come to fruition so now 3 weeks behind schedule. May be spending Xmas in hospital the way its going. Maybe New Year as well…[Read more]

]]> 89484015ad7f1adcf8f0bc61bc3cc202 dino started the topic SCT very soon in the forum Treatment http://www.myeloma.org.uk/forums/topic/sct-very-soon/ Sat, 21 Nov 2015 20:14:47 +0000 Having been in remission since Aug I have opted for STC at Addenbrookes. This and my lead up have been in other posts. I am a fairly fit 56 yr old male.

I had the Hickman Linee fitted on the 10th Aug, without sedation, and thought I would be in hospital on the 1th. this was already a week later than originally planned. due to lack of bed…[Read more]

]]> 1a1cbdea7763dd7f7c24c5269357f57f dino replied to the topic Unexpected Results in the forum General http://www.myeloma.org.uk/forums/topic/unexpected-results/page/2/#post-124733 Mon, 26 Oct 2015 21:10:55 +0000 Toby, read my experience on the stem cell harvest. I was the one in a year that Addenbrookes get. I managed to pass out but also gave 760 Million cells in the 2 hours, which the equivalent of 4 stem cell therapys worth. I suggest some one goes with you as especially if you have a anula in each elbow as you cannot bend your arm. Makes reading and…[Read more]

]]> 7c1bc8f7a17d8526b196193dc7a1a493 dino replied to the topic Unexpected Results in the forum General http://www.myeloma.org.uk/forums/topic/unexpected-results/#post-124728 Mon, 26 Oct 2015 17:57:13 +0000 Brilliant news just what anyone wants to hear. I have completed all tests and have given up stem cells. Get a central line fitted 3rd Nov and bed availability I go in on the 4th. Scared is an understatement but needs to be done to increase remission time.

]]> 5129756008d09d6ac8202118838ae10d dino replied to the topic Starting Stem Cell Therapy in the forum Treatment http://www.myeloma.org.uk/forums/topic/starting-stem-cell-therapy-2/#post-124612 Thu, 15 Oct 2015 05:49:57 +0100 Avril,

That is good to hear.

Chris,

Many thanks for your comments and words of support, very welcomed.

]]> c937ff9dc08dbd9489646f1154a54da4 dino replied to the topic Starting Stem Cell Therapy in the forum Treatment http://www.myeloma.org.uk/forums/topic/starting-stem-cell-therapy-2/#post-124567 Fri, 09 Oct 2015 20:23:33 +0100 Avril I am under Jenny Craig for the STC, my CDT was at Peterborough. My clinical nurse is Bev. Yes the whole NHS has been brill. I am glad you are in remission I have been since August. I decided on the STCbecause I was advised the remission period averaged 18 months. I went to an infoday and spoke with others who have had STCand also one of the…[Read more]

]]> 53b4f433539faf3f71384455ade29e90 dino started the topic Starting Stem Cell Therapy in the forum Treatment http://www.myeloma.org.uk/forums/topic/starting-stem-cell-therapy-2/ Fri, 09 Oct 2015 18:54:07 +0100 I am in remission from MM and am going through STC. I thought I woul share the high and low of the harvest I had yesterday. Prior to the harvest I had the chemo and self injecting the GCSF for white cell growth. A week of injections and by Tuesday evening my lumbar region was excruciatingly painful with a thobbing feeling. I also had a throbbing…[Read more]

]]> 046354bb4c9e305f78c46722ee75f871 dino replied to the topic Starting Stem Cell Therapy in the forum Newcomers http://www.myeloma.org.uk/forums/topic/starting-stem-cell-therapy/page/2/#post-124539 Wed, 07 Oct 2015 18:21:02 +0100 All,

I have now started the path for Stem Cell herapy. Last week I hadd the initial/ chemo followed by injections to grow the white cells before harvest. I am due in tomorrow for the harvesting at Addenbrookes.

The chemo went well with no side effects. They gave me Dextamethasone, the steroid and that gave me wind and reduce my ability to go to…[Read more]

]]> 483a6b2eef59ab65f357808032bc7afb dino replied to the topic Starting Stem Cell Therapy in the forum Newcomers http://www.myeloma.org.uk/forums/topic/starting-stem-cell-therapy/#post-124370 Sun, 27 Sep 2015 15:25:49 +0100 I went to the Oxford info day and had great conversations with those who have had SCT and those that give it. This has helped a lot for my forthcoming SCT. As I am in remission I managed to have a weeks holiday in York- certainly recommended.

And to the crux, tomorrow blood test, Tuesday chemo and the start of the injections and 8th the harvest.…[Read more]

]]> 142011b9af506d8d03cb86df79da1434 dino posted a new activity comment https://forum.myeloma.org.uk/activity/p/25817/#acomment-40954 Wed, 16 Sep 2015 05:23:53 +0100 Avril, I am just 56 am
And in remission for the first time after CDT. Whilst being treated at Peterborough I have opted for SCT which will be at Addenbrookes and due around end of Oct 15. If you are interested I can let you know how it went and drawbacks / advantages after I have completed it.
Graeme

In reply to - avrilro55 posted an update Stage 1 Myeloma I am on my fourth month of CTD with excellent results not too many side effects. Last month treatment in August, almost within normal limits after two months. Picked up […] ]]> 1b9178590f810f1c4eecb0b6813271bd dino replied to the topic Unexpected Results in the forum General http://www.myeloma.org.uk/forums/topic/unexpected-results/#post-124118 Mon, 14 Sep 2015 06:46:44 +0100 Michelle

I have just read your story and am pleased all is going well. I was diagnosed in Mar 15 and am in remission since late Aug. I go for STC in Oct and am scared to say the least.

It would be good to see your dietary regieme in a page of the magazine (Myeloma Matters?) which would give others assistance. I to have a reasonable diet thanks…[Read more]

]]> 8a81e7fc9297ced4221ffb130a037f08 dino replied to the topic To Transplant or not to Transplant? That is the question? in the forum Under 50s http://www.myeloma.org.uk/forums/topic/to-transplant-or-not-to-transplant-that-is-the-question/page/2/#post-124117 Mon, 14 Sep 2015 06:33:14 +0100 Helen so sorry to hear about your biopsy. I had one at the start of Treatment and then at the end to correlate to the blood tests.

The first carried out by the consultant was not nice but bearable. The second was by the F1 overseen by the registrar. She did a good job ( I was her 5th ever) but did require 2 attempts to get the bone. Being a man…[Read more]

]]> 4a3877669e0144aaf50b3ecb8b6bad2f dino replied to the topic To Transplant or not to Transplant? That is the question? in the forum Under 50s http://www.myeloma.org.uk/forums/topic/to-transplant-or-not-to-transplant-that-is-the-question/#post-123936 Sat, 05 Sep 2015 16:25:20 +0100 I collapsed with kidney injury inMarchto be told that I had Myelom, my PP found was 38.

I started CDT in early April and the count went down from 38 to 9 to 5 to 3 to 1 to 0. I was advised that only 20% hit zero PP. I Have seen Addenbrookes consultant (I have been treated at Peterborough hospital) to discuss STC and was advised that it would give…[Read more]

]]> 81dec90696985b0d86c777ed4f12e5c3 dino replied to the topic Starting Stem Cell Therapy in the forum Newcomers http://www.myeloma.org.uk/forums/topic/starting-stem-cell-therapy/#post-123933 Sat, 05 Sep 2015 15:54:50 +0100 I would like to thank all those that have replied to my post. It is reassuring to learn how each of you managed during and after your treatment. AlthoughI will still go through with the treatment the 4% mortality sits a little heavy although so does the average 18 months remission if I just felt on CDT. I will add to the forum either during or…[Read more]

]]> 80e8ede6fb32fb31c0116ccffc00ff49 dino started the topic Starting Stem Cell Therapy in the forum Newcomers http://www.myeloma.org.uk/forums/topic/starting-stem-cell-therapy/ Thu, 27 Aug 2015 19:11:17 +0100 Hi all.

I had a a back back last year an into this year.In March I collapsed with kidney injury and was rushed into hopital. The kidneys were functioning at 18% and I was then advised thaat this injury was secondary to having Myeloma – what a shock.

Peterborough City Hospital were great, the kidneys recovering enough for me to be released just…[Read more]

]]> b1e75f1207e32e2ed2111d654e7f769a dino became a registered member https://forum.myeloma.org.uk/activity/p/39553/ Sat, 27 Jun 2015 06:29:19 +0100 0