Myeloma Forum | AT | Activity https://forum.myeloma.org.uk/members/onlyme/activity/ Activity feed for AT. Sun, 12 Apr 2026 20:43:41 +0100 https://buddypress.org/?v=2.9.4 en-GB 30 hourly 2 d08f7eff6a80bdb73ef13735baef4150 AT replied to the topic Plasma cell leukeamia in the forum General http://www.myeloma.org.uk/forums/topic/plasma-cell-leukeamia/page/3/#post-92948 Sat, 11 Aug 2012 22:31:08 +0100 Hello to you all, after a few weeks, I am starting to feel a lot stronger, it's been awful.
Mums funeral was on the 16th July and we gave her the send off she had planned.
We all miss her dreadfully and are finding our ways through the pain. She was so brave and courageous and to witness something like that, took it's toll on me and I've had to…[Read more]

]]> 0f2ece2d9f5179fccd5cb408dd4582c2 AT replied to the topic Plasma cell leukeamia in the forum General http://www.myeloma.org.uk/forums/topic/plasma-cell-leukeamia/page/2/#post-92937 Wed, 04 Jul 2012 22:08:25 +0100 Hi just to let you know Mum sadly passed away at 9.30pm last night.
I will post again in a few days, but for now, feel numb.
Thank you for all your support, without this wonderful website, I would have been lost.
Lots of love
Only me
Xx

]]> f31a354320a839aae3a0b3b511d85941 AT replied to the topic Plasma cell leukeamia in the forum General http://www.myeloma.org.uk/forums/topic/plasma-cell-leukeamia/page/2/#post-92933 Sun, 01 Jul 2012 17:26:36 +0100 Hi ….. I didn't realize what a long process this is.

We are still with Mum, as she is sleeping, she is no longer responsive and is still lying peacefully, they are managing her pain as and when she seems to need it.

The Macmillan unit is a wonderful place and 7 days after Mum arriving here, the care is amazing for Mum and for us..

I…[Read more]

]]> 6cdfde86b1c811543dea9815053b6403 AT replied to the topic Plasma cell leukeamia in the forum General http://www.myeloma.org.uk/forums/topic/plasma-cell-leukeamia#post-92925 Tue, 26 Jun 2012 11:53:49 +0100 Hi, to everyone, just to give you an update. I am currently sitting in Macmillan Day Unit.

Mum has deteriorated rapidly, and we are a day or so away from the end of her very brave journey.

From the last conversation, all of her treatment was stopped as the count in her blood was rising rapidly. This is the count of the plasma cells…[Read more]

]]> 9b0cc1744b13d1affd535c348f336198 AT replied to the topic Plasma cell leukeamia in the forum General http://www.myeloma.org.uk/forums/topic/plasma-cell-leukeamia#post-92920 Sat, 23 Jun 2012 07:56:04 +0100 Vicky Tom and Eve, your words of support mean so much, thank you..

Mum wasn't doing too well, with her breathing yesterday and last night they put her on face mask oxygen rather than the nasal cannula she has been having.
She sounded rattly and looked a bit frightened.
We stayed with her as long as we could, and then left knowing I wasn't…[Read more]

]]> 24064494f61f1225433c746141a1282f AT replied to the topic Plasma cell leukeamia in the forum General http://www.myeloma.org.uk/forums/topic/plasma-cell-leukeamia#post-92916 Fri, 22 Jun 2012 11:46:34 +0100 Thank you Eve for your lovely words…
At times like this, who knows what is right for those that are the carers, and for those who are ill.

My Dad doesn't want Mum to know the added problems, unless she asks, and for now, she hasn't asked. Maybe it's the fear of her giving up the fight and slipping away, if she knew, that is his worry.

The…[Read more]

]]> 99a1269b67754e22cdb4e4641ded7655 AT started the topic Plasma cell leukeamia. in the forum General http://www.myeloma.org.uk/forums/topic/plasma-cell-leukeamia Fri, 22 Jun 2012 07:45:39 +0100 Hi it's only me once again.

We've had the news that not only is Mums Myeloma back with a vengeance, but the plasma cells are now circulating round in Mums blood out of the Bone marrow, they have said she has the very rare Plasma Cell Leukaemia. It is known to be quite Aggressive. This answers for the fever etc..

For now they are continuing…[Read more]

]]> 6402b23dd753ebaa25d7c14debd575c0 AT replied to the topic Only me and I'm back.. mum has relapsed after 7months x in the forum General http://www.myeloma.org.uk/forums/topic/only-me-and-im-back-mum-has-relapsed-after-7months-x#post-92867 Fri, 15 Jun 2012 23:26:21 +0100 Thank you for all of your kind words, we are all in this together, the carers, the ones who have been diagnosed, and the medical experts, but with a united front, we can all be there for each other, to offer words of encouragement, and for that I am thankful.
We are upbeat today after the initial knock, and upbeat, we will stay..
Confident and…[Read more]

]]> 90d0174ce0816804b1c82994f644772c AT started the topic Only me and I'm back.. mum has relapsed after 7months x. in the forum General http://www.myeloma.org.uk/forums/topic/only-me-and-im-back-mum-has-relapsed-after-7months-x Thu, 14 Jun 2012 23:07:46 +0100 Hi to one and all…

Mum has been fighting a high temperature for 10 days, with rigors/shakes. Dr thought it was infection, bacterial, no ! viral, no! it must be fungal.. No ! Biopsy showed sadly the demon is back!!

We knew and understood this would be the case one day, we have seen Mum enjoy every minute since the end of last year.. But…[Read more]

]]> 560b466fcb41e5116ea8315651524bdb AT started the topic Am following on from Clarabell.. 1 year on...... in the forum General http://www.myeloma.org.uk/forums/topic/am-following-on-from-clarabell-1-year-on Wed, 18 Jan 2012 21:41:52 +0000 I too have just come on here, as I do sporadically, to see how everyone is doing and the friendly faces and comments on different posts are so encouraging.. what a wonderful family to belong to..

I too like clara, am one year on… Mum was diagnosed just before Xmas 2010 and this has been one hell of a year.. Lots of researching and battling…[Read more]

]]> 116e13f6a43e16a4ceb7b1b5e149179f AT replied to the topic SCT - Tips and tricks! in the forum Treatment http://www.myeloma.org.uk/forums/topic/sct-tips-and-tricks#post-98554 Wed, 30 Nov 2011 23:20:17 +0000 Hiya Vicki,

Yes you are just behind us!!
My thoughts with you, I don't like to comment on what you could expect, as it's such an individual disease and everyone is so different.

Sometimes I've read things on here (won't look at any other website !) and it's not happened to my Mum. So be prepared but stay positive, your Dad, will have the…[Read more]

]]> ab3638a0e27f5b9ff3f829506338205a AT replied to the topic SCT in the forum Treatment http://www.myeloma.org.uk/forums/topic/sct1322348857#post-98546 Wed, 30 Nov 2011 22:54:07 +0000 Thank you to you all and your kind replies.

mums count started to rise on Monday.0.2 then yesterday 0.3 what a difference….

I am very grateful for all your replies. This forum, has helped me and my family so much. I know some things I didn't want to read, but rather read and be prepared, than be 'in the dark' and wonder whether all is…[Read more]

]]> 79e76051d4be1c7d7e06392bb93378c9 AT started the topic SCT. in the forum Treatment http://www.myeloma.org.uk/forums/topic/sct1322348857 Sat, 26 Nov 2011 23:07:37 +0000 Hi to you all.
Just wondered if anyone can help answer any questions??.

Today is day 10.. Day 1 being day that Mums stem cells were fed back to her. Her neutrophils are still showing zero.. They have been zero for 2 days. She has slept constantly since Wednesday. She has sickness and the unfortunate other side effect diaorrhea .. She has…[Read more]

]]> d9efe858f3e53f3a1defd6cac5d8ed70 AT replied to the topic Collapsing after chemo prior to SCT in the forum Treatment http://www.myeloma.org.uk/forums/topic/collapsing-after-chemo-prior-to-sct#post-98427 Mon, 07 Nov 2011 21:07:28 +0000 Hi am sorry to hear of your journey.. It may or may not be the same as what we have just been through with my mum.

If you look at one of my earlier posts it explains what happened.. My mum suffered a huge seizure (hyponatremic seizure) and was in intensive care for 4 days. The first day she was unconscious and on ventilator. It was the most…[Read more]

]]> cd08ef55bd51fc6ec787baaf140b0aaa AT started the topic Only me... in the forum Treatment http://www.myeloma.org.uk/forums/topic/only-me Sun, 30 Oct 2011 21:19:57 +0000 Hi to everyone once again.. Sorry for not replying… It's ONLY ME!!!!

Mum started her first phase of getting Hickman line put in.. Then had the high dose chemo..cyclowotsit!!!
But fell poorly she suffered hyponatremic seizure due to levels of sodium dropping… and spent 4 days in intensive care..

Then she struggled with GCSF injections…[Read more]

]]> 4d874be740dc07923239fdc4d652ccfb AT started the topic Mum is starting Stem Cell transplant x. in the forum Treatment http://www.myeloma.org.uk/forums/topic/mum-is-starting-stem-cell-transplant-x Wed, 12 Oct 2011 11:32:25 +0100 Hi to you all… Its ONLY ME !!

Mum has started this week with her stem cell transplant.. Hickman Line went in and today she is starting with the high dose therapy…

I just wondered if anyone could offer any words of advice or words of wisdom what to expect.

Obviously I am a little bit anxious for her. and am going to be by her side……[Read more]

]]> 5f61aa8c385751c1f3ab152c724ce95e AT started the topic Only me Mum has finished CTD finished now Velcade!!!. in the forum General http://www.myeloma.org.uk/forums/topic/only-me-mum-has-finished-ctd-finished-now-velcade Mon, 20 Jun 2011 22:32:20 +0100 Hi guys its only me!!!

Mum has finished her CTD, the trials team pulled her off the treatment as she had plateaud at 12(after 5 months)…. We wondered which way the trials team would send her (A) Velcade or b) transplant)and we finally had call to say that Velcade is next option….

So we starting that tomorrow.. After getting used to last…[Read more]

]]> 695f2fd99b69ce68475daf23165f29c1 AT replied to the topic CTD/RT Side Effects in the forum Side-effects http://www.myeloma.org.uk/forums/topic/ctdrt-side-effects#post-103890 Thu, 21 Apr 2011 21:27:54 +0100 Hiya… been wondering how you and your Dad are getting on…. We are at the same point I believe… My mum started at the same time… Mum has had nearly all the same side effects and is battling on and we are all so proud of her… Few little flutters with her atrial flutter but we are hoping that it is being looked at by cardio spec.. Fingers…[Read more]

]]> 204cf23b1d36ab7a7f846e833e274e9c AT replied to the topic PP levels in the forum General http://www.myeloma.org.uk/forums/topic/pp-levels/page/2/#post-90072 Wed, 20 Apr 2011 22:56:36 +0100 Hi been wondering how your Dad is getting on .. As started on our journey together !! My mum is doing really well pp is down to 14 … Awaiting next 3 wkd to see how we get on .. Over halfway on 6 courses if CTD …we've had few episodes where mum has had bad days but on whole time is flying by! X how is your dad coping ? And just as important how…[Read more]

]]> 92fb45aba12e495feb8893f3f8cb75ac AT replied to the topic Hello New Arrival To MM Club in the forum Newcomers http://www.myeloma.org.uk/forums/topic/hello-new-arrival-to-mm-club#post-84343 Thu, 03 Mar 2011 14:42:50 +0000 Hi H…

Sorry to to hear you joining us but a welcome from all of us…. I am the daughter of a Myeloma sufferer…..

I cant offer you any advice as I am still learning about different things but pleased to say how positive you sound after hearing such news…

Stay positive and stay smiling

Regards

Only Me
x

]]> d44a8bb989c6dd05e5b7a551c75f233c AT started the topic Hereditary link????. in the forum General http://www.myeloma.org.uk/forums/topic/hereditary-link Thu, 03 Mar 2011 14:36:59 +0000 Hereditary link with myeloma??

Just a quick note … has anyone got any thoughts on whether Myeloma is hereditary??? any research to prove it is or it isnt?

Am curious because with some of the other cancers it has a proven link to whether there is a genetic link….and screening is available for family members.. daughters etc? (Breast…[Read more]

]]> 5efe05dca7a15f1dca56cd953f10352f AT replied to the topic Treatment has started .... in the forum Treatment http://www.myeloma.org.uk/forums/topic/treatment-has-started-#post-97097 Thu, 03 Mar 2011 14:29:53 +0000 Hi how are you and hows your Dad doing???

Just a little note to see how things are going at your end??

mum is doing ok finding some days harder than others..

Been thinking about how you got in in the end?
Regards

only Me!!
x

]]> af88a7978ab4d9bdf75081fb36ee3e44 AT started the topic Only Me !!. in the forum Side-effects http://www.myeloma.org.uk/forums/topic/only-me- Mon, 28 Feb 2011 19:30:14 +0000 Hi everyone,
I have not been on in while, heres hoping everyone ok.. Mums doing fine just finding it hard after the three days, in each week, where she takes the strongest concoction …..
It totally knocks her for six…
Mum is trying to do everything that she did originally although I am trying to slow her down and tell her its ok to say she…[Read more]

]]> c990cc0c0f9424b7cd19e2b8e9e93693 AT replied to the topic Hi all sorry I have not been on here in a while...... in the forum General http://www.myeloma.org.uk/forums/topic/hi-all-sorry-i-have-not-been-on-here-in-a-while#post-89920 Mon, 28 Feb 2011 19:22:08 +0000 Hi what a lovely re assuring tale and I admire you, for what you have both been through and now having the strength to look back and re assure everyone else it can be such lovely outcome…
I am going to read this over and over again, when my mum finally goes in for the SCT… it will give me such boost…

Well done to both of you for getting…[Read more]

]]> b72aa0c5181832419c5282a47859c3bd AT replied to the topic Treatment has started .... in the forum Treatment http://www.myeloma.org.uk/forums/topic/treatment-has-started-#post-97098 Fri, 18 Feb 2011 09:48:47 +0000 Hi Clara,

If I can pass on what I learnt, whether it will help you at all, I dont know, and I suppose each case with MM is different so am not sure if your Dad will be the same..

But My mum is 67 and like your Dad, is quite a young 67!! So when I went with Mum and Dad for the appt, I was expecting three boxes …consisting of the CTD!!..…[Read more]

]]> 11f08bbccc4414116256d6f1e377861f AT replied to the topic HOT AND SPOTTY in the forum Side-effects http://www.myeloma.org.uk/forums/topic/hot-and-spotty#post-103766 Thu, 17 Feb 2011 22:08:31 +0000 Hi,
Thats good news that you back on track too and feeling good again after little dip!!
You make sure you look after yourself and get lots of rest.. I am sure the time will come for you to be wonder woman again!!!!.. We all like to think we can keep going and are ok when deep down our bodies know differently!!

Take care and keep in…[Read more]

]]> 5c9f431d23d34c2f91af47b94180050c AT replied to the topic Treatment has started .... in the forum Treatment http://www.myeloma.org.uk/forums/topic/treatment-has-started-#post-97095 Thu, 17 Feb 2011 22:03:40 +0000 Hi.. thank you for your comments.. yes the booklet is beginning to make sense.. and the tick chart is making the medication easier to administer…
I am wanting my mum to make a diary… only 'few words' on each day so she can see how she responds to the tablets.. and can see if pattern emerges!! but its probably too early days yet…

I think…[Read more]

]]> 9df71a49095b08476ba522700e0f543c AT replied to the topic Am new on here! in the forum Newcomers http://www.myeloma.org.uk/forums/topic/am-new-on-here/page/2/#post-84222 Thu, 17 Feb 2011 21:51:16 +0000 Hi all thank you for your kind wishes…

Well a little setback…Mum felt bit unwell after day one but we are back to normal and doing really well.. Mum is in hospital with low potassium levels, but is going to be coming out tomorrow and is feeling lot chirpier!!! All been rectified and after a few bags of saline, we back on course and things…[Read more]

]]> 32d495b09a6505ba60573e62a25d182f AT replied to the topic New to Dad with Myeloma in the forum Newcomers http://www.myeloma.org.uk/forums/topic/new-to-dad-with-myeloma#post-84239 Tue, 15 Feb 2011 22:23:34 +0000 Hi Hope that you are ok..

Have been thinking of you today as we seem to be both at the same point …. you with your dad and me with my mum !

Sending you best wishes to you and your family… Lots of love to your dad and hope the chest gets better very very soon..

We have just started the CDT today, athough boy is it minefield.. but am…[Read more]

]]> 04027a77083c8ec2681fa9f20bcc692c AT started the topic Treatment has started ..... in the forum Treatment http://www.myeloma.org.uk/forums/topic/treatment-has-started- Tue, 15 Feb 2011 22:18:20 +0000 Hi.. well am back .. only me!!!

Treatment has started today… what a minefield to take in… CTD and lots of other tablets… went and managed to try and take it all in but it just seems so much… this tablet then, this tablet there, this tablet there and few more on top !! Think we were all in shock how big the bag seemed to be…!!…[Read more]

]]> 281df7645b8935e895447b527abf2a8d AT replied to the topic New to Dad with Myeloma in the forum Newcomers http://www.myeloma.org.uk/forums/topic/new-to-dad-with-myeloma#post-84228 Mon, 14 Feb 2011 21:43:30 +0000 Hi Clara … Can't answer any of your questions … But what can do is send you lots of love as you battle your way through things … I am new too so can identify with all the initial queries … Good luck tomoro my mum starts cdt tomoro too xx take care hope u get answers u need xx

]]> 4d2c3bee191075aec979d411a6ed115f AT replied to the topic Am new on here! in the forum Newcomers http://www.myeloma.org.uk/forums/topic/am-new-on-here#post-84209 Sun, 13 Feb 2011 19:50:47 +0000 Hi just wanted to send my best thoughts back to you too…
It is daunting and frightening, and this site is very re assuring as we can find things out if we choose too… I am hoping you are geting the info you need..

Regards
Angie
x

]]> 9a5b7fadaed72e9c419589f627e3ae74 AT replied to the topic Am new on here! in the forum Newcomers http://www.myeloma.org.uk/forums/topic/am-new-on-here#post-84213 Sun, 13 Feb 2011 12:57:03 +0000 Hi David thank you ……It was piece of jigsaw that I couldnt find.. the trigger that would start things off for transplant!! Thank you……I will listen out for her levels of paraprotein, if that is the indicator…

I have read up about the transplant and seem to be aware of things that will happen from the harvest, it all seems so clever…[Read more]

]]> 0630f556a01cee832f79df4b533f3923 AT replied to the topic Am new on here! in the forum Newcomers http://www.myeloma.org.uk/forums/topic/am-new-on-here#post-84211 Sun, 13 Feb 2011 09:37:39 +0000 Wow, what a lovely sight greeted me this morning all these lovely replies.. thank you and what a welcome I have received!!
All is calm and we are getting used to the idea of the Myeloma topic being quite strong one at the moment! I have spent this week reading up on the subject but am only going on trusted websites.. ie here!!

Mum is starting…[Read more]

]]> 2ca1752d220b182c1c7709a309be68f8 AT started the topic Am new on here!. in the forum Newcomers http://www.myeloma.org.uk/forums/topic/am-new-on-here Wed, 09 Feb 2011 18:21:44 +0000 As you can probably tell I am new on here.. Mum just been diagnosed.. Really not sure what to expect… All I can say is the Myeloma
org were really good and efficient in getting a pack to me to read up on..
Not sure what my mum and dad are reading(If anything) but feel better being armed with info on what to expect over the next few months as…[Read more]

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