Myeloma Forum | adriwest1 | Activity https://forum.myeloma.org.uk/members/adriwest1/activity/ Activity feed for adriwest1. Sat, 18 Apr 2026 06:05:04 +0100 https://buddypress.org/?v=2.9.4 en-GB 30 hourly 2 b77d3fe5e00af0fe9dcabcb5120ba12a adriwest1 started the topic Happy new year everyone in the forum Under 50s https://www.myeloma.org.uk/forums/topic/happy-new-year-everyone/ Sun, 31 Dec 2017 18:20:23 +0000 I just want to wish everyone the very best for 2018 and keep strong. I’m not one for this usually but I find myself realising that we need to remind ourselves that a new year means a another year of survival and hopefully better treatments coming down the line- Adrian

]]> 339a950e5effef7538574d059fb356bf adriwest1 replied to the topic SCT in the forum Under 50s https://www.myeloma.org.uk/forums/topic/sct-10/#post-135517 Mon, 16 Oct 2017 09:42:57 +0100 You have to believe me that it does get easier- I think you begin to get used to it, if he’s like me you just want to be normal again and have the confidence to do what you want to without people thinking/looking at you differently. This does take time and guts to get on with life at his stage. I got very low at times but these days do pass and a…[Read more]

]]> ca212cd2856f67271e56044a343e7084 adriwest1 replied to the topic SCT in the forum Under 50s https://www.myeloma.org.uk/forums/topic/sct-10/#post-135515 Mon, 16 Oct 2017 08:32:49 +0100 It a long slog- I was diagnosed in June 2016 and only just had my SCT  the phrases ‘everybody is different’ and ‘your on a journey’ didn’t really help much. I think you just have to take it as is comes and focus on what’s next!! and try not to let your mind run away with itself.

Adrian.

]]> 57da807b545c9c8222168097f081ba03 adriwest1 replied to the topic SCT in the forum Under 50s https://www.myeloma.org.uk/forums/topic/sct-10/#post-135513 Mon, 16 Oct 2017 07:47:32 +0100 Hi Sabs,  Wish I could help on this one but I simply  don’t know the answer. Did he have an MRI scan when he was first diagnosed? From what I undwrstand if the M spike has been reduced (which it clearly has) then this should stop further bone damage.

Regards

Adrian.

 

]]> 64e89a64492194378d9df1ea4f2d7c7a adriwest1 replied to the topic SCT in the forum Under 50s https://www.myeloma.org.uk/forums/topic/sct-10/#post-135506 Fri, 13 Oct 2017 14:28:51 +0100 Hi Sabs they usually put them back 24 hrs after chemo, I know what you mean about not making sense!! but I think the chemo is so strong it kills nearly all your cells good/bad and the stem then graft behind this, side effects really kicked on around day 7 for me. After the <span style=”color: rgba(0, 0, 0, 0.870588); font-family: Roboto-Regular,…[Read more]

]]> bc73063d63c2419b2ee6d847bf1cb5c8 adriwest1 replied to the topic SCT in the forum Under 50s https://www.myeloma.org.uk/forums/topic/sct-10/#post-135504 Fri, 13 Oct 2017 12:06:23 +0100 Hi Sabs, I am 48 years old. I went in on Friday 22nd Sept at 6pm, on Saturday I had the <span style=”color: rgba(0, 0, 0, 0.870588); font-family: Roboto-Regular, HelveticaNeue, Arial, sans-serif; line-height: 20px; -webkit-tap-highlight-color: rgba(0, 0, 0, 0);”>Melphalan which   took about one hour, because of the weekend I had to wait until M…[Read more]

]]> da2c9c1fc899b6063bbd8841ff12e659 adriwest1 replied to the topic SCT in the forum Under 50s https://www.myeloma.org.uk/forums/topic/sct-10/#post-135502 Fri, 13 Oct 2017 10:25:16 +0100 Thanks Greg, It truly is an experience! I can only tip my hat to you with what you went though.

Plan to lie low for a couple of weeks and potter around.

So grateful for this site and Myeloma UK as without them I’m not sure I would have coped very well. Next I plan to raise more money (around £1200) since March. and getting friends and family to…[Read more]

]]> c61a53ff6d1ef18729947ed3610d696e adriwest1 started the topic SCT in the forum Under 50s https://www.myeloma.org.uk/forums/topic/sct-10/ Wed, 11 Oct 2017 14:37:02 +0100 hi everybody, well I just got back from my SCT. So relieved to have done it and not nearly as bad as I expected. If you have one coming up then good luck and you CAN do it- happy to answer any questions. Thanks Adrian

]]> b42c997a7995d049be693de3ac5faeb7 adriwest1 replied to the topic The best hospital to treat Myeloma??? in the forum General https://www.myeloma.org.uk/forums/topic/the-best-hospital-to-treat-myeloma/#post-135242 Thu, 28 Sep 2017 09:49:49 +0100 Hi, I am currently in Southampton Gen and they are tops- day 4 on my SCT. 

Dr J is in my option is the best!

 

]]> a3c2688f7bc68d84361f924167177b47 adriwest1 replied to the topic Recovery after Stem Cell Transplant in the forum Newcomers https://www.myeloma.org.uk/forums/topic/recovery-after-stem-cell-transplant/page/2/#post-135125 Fri, 22 Sep 2017 20:45:15 +0100 Just got in for SCT, two doors down from you Pete.

]]> 472a84792624736109a28bd2ac62b271 adriwest1 replied to the topic Recovery after Stem Cell Transplant in the forum Newcomers https://www.myeloma.org.uk/forums/topic/recovery-after-stem-cell-transplant/page/2/#post-135103 Thu, 21 Sep 2017 15:54:33 +0100 Ok thanks for the info Pete, I think I’m going in tomorrow but will need to wait until the morning to be sure. Is this your 1st day in? Thanks and keep in touch adrian.

 

]]> 7badbfdd5b6de2fc98e0f7ee5a54f9c9 adriwest1 replied to the topic Recovery after Stem Cell Transplant in the forum Newcomers https://www.myeloma.org.uk/forums/topic/recovery-after-stem-cell-transplant/page/2/#post-134929 Wed, 13 Sep 2017 15:52:24 +0100 Hi Pete good to hear from you, think your ahead of me- let me know if anything happens as I will.

]]> d3ba98a93064da04c7acc8c7403de64e adriwest1 replied to the topic Recovery after Stem Cell Transplant in the forum Newcomers https://www.myeloma.org.uk/forums/topic/recovery-after-stem-cell-transplant/page/2/#post-134893 Wed, 13 Sep 2017 07:45:55 +0100 Thanks Susie I guess the temptation  is to want to go home asap, I already think 14 days and home would be good- this really does play with your mind.

Take care

Adrian

]]> 345d0ed778af340214c9a7073a7f3c4d adriwest1 replied to the topic Recovery after Stem Cell Transplant in the forum Newcomers https://www.myeloma.org.uk/forums/topic/recovery-after-stem-cell-transplant/#post-134868 Mon, 11 Sep 2017 16:55:21 +0100 Hi Susie, going to have my SCT in Southampton. I will keep you posted and any tips you have would really be appreciated.

Hope you continue to improve on a daily basis.

Adrian.

]]> 01a7a71c654813555621c0d3062aec22 adriwest1 replied to the topic Recovery after Stem Cell Transplant in the forum Newcomers https://www.myeloma.org.uk/forums/topic/recovery-after-stem-cell-transplant/#post-134840 Thu, 07 Sep 2017 15:51:11 +0100 Hi Susie- well I did it, I never thought I would get this far with all the treatment. I’m now waiting on a bed for the main event. How are you feeling now?

Thankyou for asking by the way it means a lot

adrian

]]> 8c9c6cefbb510fdfdbdac06357a31ec4 adriwest1 replied to the topic Recovery after Stem Cell Transplant in the forum Newcomers https://www.myeloma.org.uk/forums/topic/recovery-after-stem-cell-transplant/#post-134809 Sun, 03 Sep 2017 13:15:40 +0100 Thank you hoth for your kind words, I needed that. Will need your advise again if ok as stem cell looms as soon as the line is on, they said its just a bed when it comes up- this just doesn’t feel real sometimes. Thank you again!!

adrian.

]]> 57d0b94338e7b84c44f298bf6689eebd adriwest1 replied to the topic Recovery after Stem Cell Transplant in the forum Newcomers https://www.myeloma.org.uk/forums/topic/recovery-after-stem-cell-transplant/#post-134805 Sun, 03 Sep 2017 09:05:33 +0100 Thanks Greg, I othen have a look on this site as I don’t use facebook for advice- don’t want to sound like a moaner but I am finding this so hard. I hate blood/ needles and the constant trips to the hospital.

We are really lucky to have this site to express our feelings as its feels a lonely place sometimes as only we know how we feel, I find…[Read more]

]]> 5b2a71f967ab6445e8e8c4e05029232a adriwest1 replied to the topic Recovery after Stem Cell Transplant in the forum Newcomers https://www.myeloma.org.uk/forums/topic/recovery-after-stem-cell-transplant/#post-134803 Sun, 03 Sep 2017 08:33:28 +0100 Hi, having my Hickman Line put in this Tuesday any advise would really be appreciated, just feel no nervous.

thank you

Adrian

]]> cbff5eb9ae4d57b17235fe49799888b9 adriwest1 replied to the topic Side effects of Ninlaro(Ixazomib) in the forum Treatment https://www.myeloma.org.uk/forums/topic/side-effects-of-ninlaroixazomib/page/2/#post-134481 Thu, 03 Aug 2017 11:33:32 +0100 Hi all, what’s shocking is that you can/do feel helpless in what drugs we can access. From what I understand NICE are priced focused even at the expence of the patient, the only blessing is that we seem to get the best drugs further down the line. From my prospective I want the best treatment and some of the new drugs offer real hope but the time…[Read more]

]]> 7ce73d8551519203c4b5165102d6af54 adriwest1 replied to the topic Side effects of Ninlaro(Ixazomib) in the forum Treatment https://www.myeloma.org.uk/forums/topic/side-effects-of-ninlaroixazomib/page/2/#post-134462 Wed, 02 Aug 2017 08:44:43 +0100 Hi Teresa, I was taking it first thing in the morning, as soon as I woke up. Then waited min of one hour before eating anything, there were a few times I felt sick but geneally I found the drug was less toxic than the previous ones I had been on. Had my biopsy yesterday and fully recommend gas and air, had three so far and this was by far the…[Read more]

]]> 16692557219ad8d3af132294ab228a34 adriwest1 replied to the topic Side effects of Ninlaro(Ixazomib) in the forum Treatment https://www.myeloma.org.uk/forums/topic/side-effects-of-ninlaroixazomib/#post-134430 Fri, 28 Jul 2017 08:33:05 +0100 <p style=”text-align: left;”>I live on Isle of Wight- diagnosed June 2016, had 8 rounds of VTD then three rounds of  Ixa. Dex and Rev. Have a bone biopsy next Tuesday to see if the treatment has worked.</p>
<p style=”text-align: left;”>I found the side effects much easier on the last treatment but as you said back on the drugs and daily…[Read more]

]]> 9e4c82d92d7a67c9ca8719fab347df86 adriwest1 replied to the topic Side effects of Ninlaro(Ixazomib) in the forum Treatment https://www.myeloma.org.uk/forums/topic/side-effects-of-ninlaroixazomib/#post-134427 Fri, 28 Jul 2017 07:47:56 +0100 Hi Teresa, I to am being treated at Southampton, your husbands story and mine are similar. I have just completed three months of the drugs you are about to start. I assume you see Dr J

adrian

]]> e99ca90fd982dd24def7f6ad4edf40e5 adriwest1 replied to the topic Just been diagnosed!! in the forum Under 50s https://www.myeloma.org.uk/forums/topic/just-been-diagnosed-2/page/6/#post-133954 Thu, 22 Jun 2017 14:34:32 +0100 Hi Richard, you are not rambling this is fantastic feedback- I really appreciate it. How are you feeling now?

]]> 2dd97bf2e4e9b24ab6a7c43042ced895 adriwest1 replied to the topic Just been diagnosed!! in the forum Under 50s https://www.myeloma.org.uk/forums/topic/just-been-diagnosed-2/page/6/#post-133900 Sun, 18 Jun 2017 07:47:36 +0100 Hi Richard, God that happened all very quickly for you, you made it and home- is there a sense of relief?  Not having mine until August so more time to think, did you try ice for the mouth?  Really pleased you are still positive, what’s your plan for the next few weeks?

wishing you the best

adrian

]]> 176fbe3072620e642656a22efdec4929 adriwest1 replied to the topic Just been diagnosed!! in the forum Under 50s https://www.myeloma.org.uk/forums/topic/just-been-diagnosed-2/page/6/#post-133707 Wed, 07 Jun 2017 07:48:23 +0100 No worries Ann, I hope everything goes well.

adrian

]]> c6c3efd46d10c5eb83546473aa2a86db adriwest1 replied to the topic Just been diagnosed!! in the forum Under 50s https://www.myeloma.org.uk/forums/topic/just-been-diagnosed-2/page/6/#post-133668 Sun, 04 Jun 2017 15:35:37 +0100 Hi Rob, I hope it all goes to plan on Monday and you don’t have any relays- it would be great to keep in contact.

all the best

adrian

 

]]> b3dea842a513cc6338539fc0a8241f40 adriwest1 replied to the topic Just been diagnosed!! in the forum Under 50s https://www.myeloma.org.uk/forums/topic/just-been-diagnosed-2/page/6/#post-133653 Thu, 01 Jun 2017 13:57:48 +0100 Thanks Rob- really great info on what’s coming up, really glad to hear your ready for the transplant soon. have you had your Hickman line put it yet? Do you have to wait for a bed before you can start?

thanks

regards

Adrian

 

]]> a352e225b66d4debfedc4352c8ac1f59 adriwest1 replied to the topic Just been diagnosed!! in the forum Under 50s https://www.myeloma.org.uk/forums/topic/just-been-diagnosed-2/page/5/#post-133643 Wed, 31 May 2017 21:59:48 +0100 Thanks Kate, I guess it’s a case of wait and see, I’m not sure why this hit me- I have been very lucky and managed to work nearly all the days I have been on treatment and wanted to carry on right upto the last point, I’m self employed so it make life a little more challenging with finance.

Thanks again

adrian

]]> f54ec40a9b0c5476f57c00ac9a0c4425 adriwest1 replied to the topic Just been diagnosed!! in the forum Under 50s https://www.myeloma.org.uk/forums/topic/just-been-diagnosed-2/page/5/#post-133641 Wed, 31 May 2017 20:38:55 +0100 Richard, thanks for you feedback, I will keep in contact with you,

Adrian

]]> 8b78666a27a4ee523243a6f9ef99757e adriwest1 replied to the topic Just been diagnosed!! in the forum Under 50s https://www.myeloma.org.uk/forums/topic/just-been-diagnosed-2/page/5/#post-133639 Wed, 31 May 2017 18:05:32 +0100 Thanks a lot Kevin- best wishes on your next treatment mate.

]]> 3083eff259df4370ebdb062b4b5478d0 adriwest1 replied to the topic Just been diagnosed!! in the forum Under 50s https://www.myeloma.org.uk/forums/topic/just-been-diagnosed-2/page/5/#post-133637 Wed, 31 May 2017 15:06:16 +0100 Hi all, please could I have some help- I was told there was more chemo before harvesting, is this correct? Also I was told I could lose my hair at this point? I know I will lose it but didn’t expect it at this stage- please could I have any thoughts on this- kind regards Adrian.

]]> 29d3839fc444ed433259d6f5df6678bc adriwest1 replied to the topic Just been diagnosed!! in the forum Under 50s https://www.myeloma.org.uk/forums/topic/just-been-diagnosed-2/page/5/#post-133588 Sun, 28 May 2017 09:23:55 +0100 Hi Richard, so happy to see you are making good progress with this marathon of treatment (I still find the whole thing a bit crazy) you are now ahead of me on the treatment as I had two extra treatments (8months in total). Due harvesting soon and was looking for any feedback/tips please- not good with needles etc..

Not sure about the mini allo…[Read more]

]]> c9b48b5a20ed247ce774080521b950d7 adriwest1 replied to the topic The Perfect Pair in aid of Myeloma UK - in Kidderminster, Worcestershire in the forum Off topic https://www.myeloma.org.uk/forums/topic/the-perfect-pair-in-aid-of-myeloma-uk-in-kidderminster-worcestershire/#post-133138 Sat, 22 Apr 2017 08:46:28 +0100 Good luck tonight Deb, sorry I can’t make it. Gave my birthday money to Myeloma UK in March, set up a just giving page and nearly got £1000 so tried to do my bit. I will continue to raise awareness/money after my SCT in 2-4 weeks. Keep going Deb you really are an inspiration.

adrian.

]]> 37bb890233e344568188c31db4e24862 adriwest1 and andyg are now friends https://forum.myeloma.org.uk/activity/p/49403/ Fri, 21 Apr 2017 03:56:00 +0100 0 68be79ed151debab36afe62848a270eb adriwest1 replied to the topic New to this - Here's my Dad's story so far in the forum Newcomers https://www.myeloma.org.uk/forums/topic/new-to-this-heres-my-dads-story-so-far/#post-132756 Tue, 28 Mar 2017 18:05:11 +0100 Thank you James, what an uplifting story. Thank you for sharing, regards Adrian.

]]> 63b73471560a381efcdec7a30cf149c8 adriwest1 replied to the topic Switching from VCD to VTD in the forum Treatment https://www.myeloma.org.uk/forums/topic/switching-from-vcd-to-vtd/page/2/#post-131635 Mon, 23 Jan 2017 20:13:40 +0000 Hi Brian, on my sixth round of VTD, first 4 months were fine but as time has gone on I feel more and more tired. Had a few side effects but nothing to bad, slight sick feeling and ringing in my left ear but can’t pinpoint which drug is causing this. Currently on 100mg a day (started on 50)  of the thalidomide which I now take every day including…[Read more]

]]> 81a1f22dad38111587fd67a1974b0c0b adriwest1 replied to the topic Osteonecrosis in the forum Related conditions https://www.myeloma.org.uk/forums/topic/osteonecrosis/#post-131634 Mon, 23 Jan 2017 18:09:09 +0000 Hello Henry, I also live on the island, Godshill. It great to hear about St Mary’s and would agree that they have been very good. Glad to read you are doing well and hoping to get an update from Southampton tomorrow. Dr Jenner- any advice would be well received, regards Adrian.

]]> d21f060d0af0d1a1a4a2aae1c86d878b adriwest1 replied to the topic Switching from VCD to VTD in the forum Treatment https://www.myeloma.org.uk/forums/topic/switching-from-vcd-to-vtd/page/2/#post-131631 Mon, 23 Jan 2017 12:48:41 +0000 Hi Brian, I hope you don’t mind me chipping in, like yourself I am facing a SCT and I am concerned about the whole thing, I started VTD in July and from then until now there has been an assumption that this is what needs to be done. Nobody has asked me if I want one! I see my specalist again tomorrow so I guess I might have to make my mind up…[Read more]

]]> d7b78f166f28c47dccdc48840ff64e86 adriwest1 replied to the topic Just been diagnosed!! in the forum Under 50s https://www.myeloma.org.uk/forums/topic/just-been-diagnosed-2/page/2/#post-131588 Wed, 18 Jan 2017 14:13:47 +0000 <p style=”text-align: center;”>AHi Richard, I live on the Isle of Wight so I have weekly visits over here and then go to Southampton to see the specalist, so far I have seen him twice and due to go again next Tueaday. The island consultant said it could be 5-6 cycles but the chap in Southampton has indicated that it will be more, at least 7. I…[Read more]

]]> ebd5e5985e2c3e9771ff61cd559be2bb adriwest1 replied to the topic Just been diagnosed!! in the forum Under 50s https://www.myeloma.org.uk/forums/topic/just-been-diagnosed-2/page/2/#post-131572 Tue, 17 Jan 2017 13:37:49 +0000 <p style=”text-align: right;”>Hi Richard, glad your doing well. I am slightly ahead of you on treatment, cycle 5 just started on VTD.</p>
At 47 years old it was/is a complete shock to the system and can be very confusing to fully understand, I reached the conclusion that you have no real choice but to get on with it- I am off to a support group in…[Read more]

]]> f1bba69d53d0c0e9ebff2a28e5aa4e43 adriwest1 replied to the topic Daratumumbab and high risk SMM in the forum Smouldering myeloma / MGUS https://www.myeloma.org.uk/forums/topic/daratumumbab-and-high-risk-smm/#post-131489 Thu, 12 Jan 2017 10:28:21 +0000 Hi Jane, when I saw my specalist in Dec 16 he discussed this drug and told me that this could be a game changer. I am 4 cycles down the VTD route and no trials were available but would have seriously considered this. Adrian.

]]> c72735c438adba87c810c9b511e0d5ea adriwest1 became a registered member https://forum.myeloma.org.uk/activity/p/48094/ Sun, 08 Jan 2017 10:14:52 +0000 0