Myeloma Forum | lynnes | Activity https://forum.myeloma.org.uk/members/lynnes/activity/ Activity feed for lynnes. Fri, 24 Apr 2026 05:52:17 +0100 https://buddypress.org/?v=2.9.4 en-GB 30 hourly 2 bfa83036315c3078d16916fd45aa4503 lynnes replied to the topic Dexamethasone and mood in the forum Side-effects https://www.myeloma.org.uk/forums/topic/dexamethasone-and-mood/#post-134435 Fri, 28 Jul 2017 19:13:05 +0100 At my consultant appointment a month ago I described my mood swings and the Dex dose was halved to 20mg.  I was told that the 40mg dose could not be tolerated for too long by many patients.  Since then I still have low mood swings two days after taking them, but not as bad as before.  I also try to get out of the house on a Monday to stop my…[Read more]

]]> 1d044384351661cc8a625417bee8209c lynnes replied to the topic depression and chemotherapy in the forum Related conditions https://www.myeloma.org.uk/forums/topic/depression-and-chemotherapy/#post-134095 Sat, 01 Jul 2017 20:37:07 +0100 I am on VTD regime (40 mg dexamethasone once weekly on a Friday).  Come Sunday evening and all day Monday I would become depressed, crying, inconsolable and wondering if any of this was worth it.  I have just had my second monthly consult since starting chemo and mentioned this and the Dex dose was immediately halved.  I was told that not many pe…[Read more]

]]> 07140104869d7361810eaa451807d425 lynnes replied to the topic hearing loss in the forum Side-effects https://www.myeloma.org.uk/forums/topic/hearing-loss/#post-134094 Sat, 01 Jul 2017 15:42:14 +0100 Many thanks for your reply Sue.  My hearing loss began after I was prescribed Ramipril for slightly raised BP.  I learned that this too is an ototoxic drug but nobody would accept that it had caused my hearing loss (rather I was quite loopy).  To add insult to injury my BP is only ever raised when confronted with a BP monitor – over 24 hours at ho…[Read more]

]]> 44b5a13c7c40c119449bcded93c83262 lynnes replied to the topic Dexamethasone and mood in the forum Side-effects https://www.myeloma.org.uk/forums/topic/dexamethasone-and-mood/#post-133973 Sun, 25 Jun 2017 21:01:02 +0100 It’s good to read your experiences with Dexamethasone.  I have a Velcade injection once a week and take 40mg of Dex that same evening.  This gives me a boost on a Saturday and I can go shopping – slowly but nevertheless I have more energy than the rest of the week.  However, by Sunday/Monday I am in a really dark place which I gradually return fr…[Read more]

]]> 780cde63ccf12cfa6fabde1ce46417ba lynnes replied to the topic What is going on?? in the forum Side-effects https://www.myeloma.org.uk/forums/topic/what-is-going-on/#post-133972 Sun, 25 Jun 2017 20:49:52 +0100 I received my first Zometa infusion just before starting VTD treatment.  I received a 15 minutes infusion at 5 p.m. on 8th May, went to work as usual on the morning of 9th but had to leave for home at lunchtime with severe shaking, bloodless fingers and profuse sweating.  Was in bed for two days alternating with high fever, shivering, sweating, d…[Read more]

]]> 02be9091b7af421716ce30a04342a694 lynnes replied to the topic hearing loss in the forum Side-effects https://www.myeloma.org.uk/forums/topic/hearing-loss/#post-133971 Sun, 25 Jun 2017 20:36:32 +0100 I suffered from inexplicable hearing loss (left ear) long before I was diagnosed with myeloma.  I am currently on VTD hoping to go into remission and then go ahead with a STC.  I already have hearing aids which I don’t wear unless I am going out but it looks like I might get them adjusted post transplant.  I would be interested to know if there is…[Read more]

]]> 99afcd548ad6835feee8fd83bc840000 lynnes replied to the topic Tremors in the forum Side-effects https://www.myeloma.org.uk/forums/topic/tremors/#post-133669 Sun, 04 Jun 2017 16:14:19 +0100 Have just finished my first cycle.  Have slight tremor in my left hand but both hands and feet give the feeling of slight pins and needles.  My feet burn after Velcade.  I am feeling slightly more energetic but must remind myself to slow down as I become very breathless – it is difficult to get the right balance.  My legs are still feeling heav…[Read more]

]]> 2d1baea6b83be0c0fd30d3d9612b615d lynnes replied to the topic Zometa in the forum General https://www.myeloma.org.uk/forums/topic/zometa-3/#post-133594 Sun, 28 May 2017 17:58:34 +0100 Thank you for responding David. I think if I ask for a longer infusion time and drink plenty of water all the way through it might be less traumatic. I seriously did not want to have a second infusion knowing how the first affected me.

]]> f60ae00c6e77e88e87bb9d2602a67137 lynnes replied to the topic Zometa in the forum General https://www.myeloma.org.uk/forums/topic/zometa-3/#post-133585 Sat, 27 May 2017 22:51:31 +0100 Thanks for your reply Maggie.  I had heard that the infusion time could make a big difference.  Mine was for 15 minutes but actually took a little less time.  I will seek advice next week when I see consultant for the first time since my treatment started.

]]> 81d7d5bf97029b01eaff2581053bc6e5 lynnes replied to the topic Tremors in the forum Side-effects https://www.myeloma.org.uk/forums/topic/tremors/#post-133581 Sat, 27 May 2017 12:56:25 +0100 I am into my third week of VTD and to be honest am not sure what is going on with my body.  I do have very slight tremors in my hands but not constantly.  I can only describe my legs as feeling “heavy”.  I get quite breathless but feel better coming into my third week than I did during the first, when I seemed to spend most of my time resting on…[Read more]

]]> 9d7f8cc9a9c026085694f6bad91b1c6c lynnes started the topic Zometa in the forum General https://www.myeloma.org.uk/forums/topic/zometa-3/ Sat, 27 May 2017 12:41:47 +0100 I had my first infusion of Zometa on May 8th.  I wasn’t warned of immediate side-effects, only that perhaps in a year I would suffer with toothaches and mouth ulcers so must keep mouth meticulously clean and visit dentist regularly.  However, I had to leave work the at lunch time the following day suffering from tremors, high temperature and s…[Read more]

]]> 05e00d4c3cb55b59fcf0bd6a67695a85 lynnes replied to the topic Revlamid in the forum Treatment https://www.myeloma.org.uk/forums/topic/revlamid-2/#post-133091 Mon, 17 Apr 2017 21:06:53 +0100 I will watch response to this post with interest as I am due to discuss my treatment options at the end of this week.

]]> e9ed10a8335622911b395f8408235c67 lynnes started the topic What happens if SCT fails? in the forum Treatment https://www.myeloma.org.uk/forums/topic/what-happens-if-sct-fails/ Sun, 19 Mar 2017 11:06:37 +0000 I am anxious to know what happens if SCT fails – what is the outcome of massive chemo but no viable return of platelets?

]]> 8b8b9e0b3856626d82b4260d140fdd3c lynnes replied to the topic Remission in the forum Newcomers https://www.myeloma.org.uk/forums/topic/remission-2/#post-132181 Wed, 08 Mar 2017 22:42:41 +0000 Thank you Annette.  I thought I had read on one of your posts that you lived in The Netherlands.   I am not sure of the availability of Revlimid in the UK but have arranged for a second opinion over here next week with a leading myeloma specialist to try to get my head around all the options.  At the moment I feel as if I am an onlooker, that this…[Read more]

]]> 6ca8b9385a7b91d8480972d997a6ea9a lynnes replied to the topic Remission in the forum Newcomers https://www.myeloma.org.uk/forums/topic/remission-2/#post-132157 Tue, 07 Mar 2017 20:23:57 +0000 Thank you both for taking the time to reassure me.  I am not confident enough to do anything other than I am told at this frightening time, although I am trying to gather as much information as I can.  The more I know the less scared I might be!

Annette, is Revlimid easily prescribed in the UK?  Reading up on it, it seems that it is prescribed wh…[Read more]

]]> 2558758ca47c4981e5f08b990a0f4c31 lynnes started the topic Remission in the forum Newcomers https://www.myeloma.org.uk/forums/topic/remission-2/ Sun, 05 Mar 2017 22:34:41 +0000 can anyone tell me what length of remission one can hope for if given chemo as the only treatment option?

]]> b7daa347172a3b376cd4519eaf217345 lynnes became a registered member https://forum.myeloma.org.uk/activity/p/48798/ Sun, 05 Mar 2017 22:28:11 +0000 0