onlyme replied to the topic Plasma cell leukeamia in the forum General 11 years, 8 months ago
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]
onlyme replied to the topic Plasma cell leukeamia in the forum General 11 years, 10 months ago
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
onlyme replied to the topic Plasma cell leukeamia in the forum General 11 years, 10 months ago
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..
onlyme replied to the topic Plasma cell leukeamia in the forum General 11 years, 10 months ago
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]
onlyme replied to the topic Plasma cell leukeamia in the forum General 11 years, 10 months ago
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]
onlyme replied to the topic Plasma cell leukeamia in the forum General 11 years, 10 months ago
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]
onlyme started the topic Plasma cell leukeamia. in the forum General 11 years, 10 months ago
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]
onlyme replied to the topic Only me and I'm back.. mum has relapsed after 7months x in the forum General 11 years, 10 months ago
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]
onlyme started the topic Only me and I'm back.. mum has relapsed after 7months x. in the forum General 11 years, 10 months ago
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]
onlyme started the topic Am following on from Clarabell.. 1 year on…… in the forum General 12 years, 3 months ago
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]
onlyme replied to the topic SCT – Tips and tricks! in the forum Treatment 12 years, 5 months ago
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]
onlyme replied to the topic SCT in the forum Treatment 12 years, 5 months ago
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]
onlyme started the topic SCT. in the forum Treatment 12 years, 5 months ago
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]
onlyme replied to the topic Collapsing after chemo prior to SCT in the forum Treatment 12 years, 6 months ago
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]
onlyme started the topic Only me… in the forum Treatment 12 years, 6 months ago
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]
onlyme started the topic Mum is starting Stem Cell transplant x. in the forum Treatment 12 years, 6 months ago
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]
onlyme started the topic Only me Mum has finished CTD finished now Velcade!!!. in the forum General 12 years, 10 months ago
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]
onlyme replied to the topic CTD/RT Side Effects in the forum Side-effects 13 years ago
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]
onlyme replied to the topic PP levels in the forum General 13 years ago
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]
onlyme replied to the topic Hello New Arrival To MM Club in the forum Newcomers 13 years, 2 months ago
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
