mandyphillips41 replied to the topic Collapsed vertebrae in the forum Related conditions 10 years, 6 months ago
Hi. I had a collapsed vertebrae T7 and I ended up having a Kyphoplasty operation. The minute I came round from the operation it was instant relief. It was definitely the best thing to do as 3 weeks later I had a stem cell transplant, without the operation I don’t think I could have done the SCT. It’s worth considering – good luck
mandyphillips41 replied to the topic My Remission is over!! in the forum General 10 years, 7 months ago
Hi Everyone and thank you so much for replying… Things are certainly sent to try us!!
I have already posted in another forum the following:
My consultant paid me his daily visit on Thursday last week and advised me that I would need to have a hard think about which way I would like to go for the future… He could offer me a double stem cell tra…[Read more]
mandyphillips41 started the topic Decisions – To have a transplant or not!! in the forum Treatment 10 years, 7 months ago
Hi All
Just had a long conversation with my consultant. My myeloma is very aggressive and even after cycles of chemotherapy it is always there waiting to pounce. We discussed my options today (he is always very honest & straight with me) basically I can have a double transplant – I have my own stem cells, then course of strong chemo, then a…[Read more]
mandyphillips41 replied to the topic My Remission is over!! in the forum General 10 years, 7 months ago
Hi Everyone.. Wow what a journey!!! I went to see the consultant at the Christie Clinic, by the way he is amazing – Dr Adrian Bloor – he saved my life – Twice! I was admitted on 29th `january as an emergency I had Kidney failure and the Myeloma was so aggressive. The doctor said it was wall to wall inside my body but he didn’t think my body…[Read more]
mandyphillips41 replied to the topic Mouth sores…to ice or not to ice that is the question. in the forum Side-effects 10 years, 9 months ago
Hi Carol
Please try not to worry I don’t believe I was ever in remission. I suffered side effect from the start and I told my consultant last week about this as I never felt well. Also I have no faith in him whatsoever this is the main reason for me going to the Christie centre. I just hope & pray that this time around they get it right. Good luck…[Read more]
mandyphillips41 started the topic Numb bottom lip and chin in the forum General 10 years, 9 months ago
Hi, as some of you already know I was told on Monday that the cancer was back after only 7 weeks in remission. (If I ever was in remission because I have never felt we’ll.
Anyway, I was wondering if anyone else was suffering from this:
My bottom lip & my chin feel completely numb, my lip feels very swollen but when I look in the mirror it…[Read more]
mandyphillips41 replied to the topic Mouth sores…to ice or not to ice that is the question. in the forum Side-effects 10 years, 9 months ago
Hi Carol
I had iced lollies and they seemed to work for me, good luck withheld transplant, I had my first on in May 2013 and in November 2013 was told I was in remission. On Monday I was told the cancer was back so remission was only 7 weeks, looks like I have to do it all agains
Anyway, try the iced lollies and as I said before Good Luck ❌❤️❌
mandyphillips41 replied to the topic My Remission is over!! in the forum General 10 years, 9 months ago
Hi Everyone & thank you so much for taking the time to reply.
I was at the hospital today & had a bone marrow extraction (owwww) they let my sister come in with me which definitely helped me. I go back tomorrow morning for a skeletal X-Ray & I have received an appointment at the Christie Centre in Manchester. Just hoping that whatever I choose…[Read more]
mandyphillips41 started the topic My Remission is over!! in the forum General 10 years, 9 months ago
Hi everyone, well I got the worst news yesterday “Your cancer is back!
I got told In November 2013 that I was in remission so that’s roughly 7 weeks. The worst of it is that I was constantly telling my consultant that I didn’t feel well so how could i possible be in remission?
I don’t know how I am feeling, I suppose I feel like I am talking…[Read more]
mandyphillips41 posted a new activity comment 10 years, 10 months ago
Hi Jimbob & thanks for the reply. I fully agree, I feel so sorry for my ever patient husband he must really be fed up with my ailments. I went back to my G.P just before Christmas & apart from the OxyContin & Oxynorm she has changed my medication to see if this helps. This change took place 10 days ago and all this has done is make me feel sick…[Read more]
mandyphillips41 replied to the topic Lenalidomide & Maintenance in the forum Related conditions 10 years, 11 months ago
Hi Sims and thanks for the reply. I think is is definitely something I can mention to my specialist, I am seeing him on Tuesday and I think any input is a positive thing.
Good luck & take care
Mandy x
mandyphillips41 replied to the topic Bone Pain in the forum Related conditions 10 years, 11 months ago
Hi Andy
Thank you so much for your reply 🙂
I am now seeing a Nuerologist on Tuesday so I will mention to him about bone pain possibly being related to the Stem Cell production.
Its a little depressing to think I may have to live like this if it is damage caused by the treatment, I don’t have much quality of life and I am only just 50. My…[Read more]
mandyphillips41 started the topic Bone Pain in the forum Related conditions 10 years, 11 months ago
Hi
I was diagnosed on 12th October 2012 with Multiple Myeloma and I am now 6 months post stem cell transplant and I am feeling terrible pains in my body mainly back, down shins to the top of my feet and down my fingers. I have seen a (sorry about the spellings) neurologist, rhuematologist and a back specialist. I have had a kyphoplasty, carpel…[Read more]
Hi Mandy!
Likewise I have a lot of pain post transplant (April 2012) and getting worse. Skull, shoulder, ribs. left hip, both knees and left ankle and foot. Fingers and neuropathy do not help either! However, do not despair, Oxycontin and Oxynorm help with pain management, as does radiotherapy when required. A simple walking stick helps with…[Read more]
Hi Jimbob & thanks for the reply. I fully agree, I feel so sorry for my ever patient husband he must really be fed up with my ailments. I went back to my G.P just before Christmas & apart from the OxyContin & Oxynorm she has changed my medication to see if this helps. This change took place 10 days ago and all this has done is make me feel sick…[Read more]
mandyphillips41 replied to the topic Anxiety in the forum Side-effects 11 years, 5 months ago
Hi Mothas
Unfortunately I do not had a good view of the Mersey. But the rooms with the view are half the size of mine so I decided I would much sooner have the space.. 🙁 SHAME
MANDY X
mandyphillips41 replied to the topic Anxiety in the forum Side-effects 11 years, 5 months ago
Good Evening everyone
Well I will have been in for a week tomorrow and to be honest I don't know where the time has gone.. I had my SCT on Thursday and so far – so good!! Couldn't feel better if I tried. Its a real weird feeling laying/sitting here waiting to feel poorly.. when you just feel good.
Sorry I have not much to tell but it really…[Read more]
mandyphillips41 replied to the topic Anxiety in the forum Side-effects 11 years, 5 months ago
Thanks Tom.. I have been using the mouthwash also like its going out of fashion because mouth ulcers is something I have always suffered from and that scares me hence I also use the mouthwash and the Nystatin. Right nurse has give me a sleeping tablet as I haven't had much sleep the past 2 nights.. good night everyone
Mandy x
mandyphillips41 replied to the topic Anxiety in the forum Side-effects 11 years, 5 months ago
I am eating a lot but mostly all of the wrong things – I have developed a terrible sweet tooth – got to stop it I dont want to gain the weight… I will keep you posted about the x-ray – fingers crossed I am right and the doctor is wrong. hehehe, Mandy x
mandyphillips41 replied to the topic Anxiety in the forum Side-effects 11 years, 5 months ago
Thanks Tony.. thats very reassuring – about the weather at least.. haha. I love the outdoors and have such a happy social and family life I am not going to let anything take that away from me and I am going to be a Nanny in October so thats something worth fighting for 🙂 Its also my 50th birthday in October so that 2 good things to get better…[Read more]
mandyphillips41 replied to the topic SCT. Husband still unsure? Can anyone help? in the forum Treatment 11 years, 5 months ago
Hi Gill
I was diagnosed last October, I am in hospital now having had my SCT today. I was on the clinical trials prior to this and I must confess the side effects I suffered were really rough. My feelings are what choices do I have so after talking to myself, reading other peoples journeys I decided I didn't really have any other choice. I…[Read more]
mandyphillips41 replied to the topic Anxiety in the forum Side-effects 11 years, 5 months ago
Hi Megan and Tom and anyone else that is following me x
Thanks for asking – yes I had my second stem cells put in today and everything was fine, they bought a portable x-ray machine to my room to x-ray my abdomen to check if I have a blood clot as my ankles and legs are still very swollen – I don't think of myself as a medical person whatsoever…[Read more]
Hi Mandy
Sorry to hear you had so short remission and hope you will get treatment which will work.
Good luck
MMaureen