My Journey - Jayne

Please post here your experiences of MDS as a patient, carer, family or friend

Moderator: Steering Committee

Post Reply
janetstanford
Posts: 335
Joined: 01 Nov 2010 17:54
Contact:

Re: My Journey - Jayne

Post by janetstanford » 07 Mar 2012 21:26

Hello Jayne
glad your feeling ok with a few blips neuts yes i agree whatever amount is in the sample and the blood sorry cant help but it seems good that your levels are ok
well i think i found you on face book seen your photo side view brown hair bobbed with a slight wave and i also saw a christmas photo which i believe is you and your family ..please tell me do i have the right person this time did not do a request just in case as the last person was the wrong 1 :?: ...
well had a busy day mother to hospital and then shops and i am worn out so i am away for some rest
hope you stay well and hear from you soon :) Janet
Jayne
Posts: 194
Joined: 16 May 2011 11:33
Contact:

Re: My Journey - Jayne

Post by Jayne » 08 Mar 2012 10:12

Janet - yes that is me!!! Send me a friend request!!! Will be good to see you on fb.
My neuts are now 0.00, I actually feel quite excited, how odd is that. I think it is because I know the chemo is working and well this is just the first step in me becoming a super healther, super fit mum and wife again!!!! Maybe not the super but I will become healthy and well. I can work on the 'super' bit, lol. My hb is still holding up at 8.7, platelets yesterday were 40.
Talk again soon,
love Jayne
Jayne
Feb 2011 MDS RCMD. Jan 2012 RAEB.
Feb 2012 - 2 lots of chemo each 4-6 weeks in hospital to destroy leukaemic cells resulting in remission from AML.
July 6 2012 - Stem cell transplant
Doing very well, feel great
Age 43.
janetstanford
Posts: 335
Joined: 01 Nov 2010 17:54
Contact:

Re: My Journey - Jayne

Post by janetstanford » 08 Mar 2012 12:37

Hi Jayne
8-) at last i know what 1 of you look like so much better when you can put a face to the name :)
neuts at nil they will be keeping an eye on you now for infections and your platelets i remember mine at 1 time went down to 2 did not know that this was an issue i then had transfusions..thankfully they grew back and each time i have an increase i get so excited :?: silly really last 2 results had 190 and 155 normal 8-) and here you are pleased they are getting lower ...and the super bit as mothers we always try to be i know that feeling well we judge ourselves too hard ....healthy i raise my glass to that and do wish you well

face book i will do a request but as i use other halfs p.c it will be through his there may be a photo of me on there although i have to say i hate having photo taken never mind displayed and every one that is put on i have it deleted i may in this instance have 1 put on just for you

well good luck stay well Janet :D
Jayne
Posts: 194
Joined: 16 May 2011 11:33
Contact:

Re: My Journey - Jayne

Post by Jayne » 12 Mar 2012 11:58

Hi All
Just a little update, I had another temp hike on Saturday/Saturday night so whacked straight onto antibiotics. Went for a chest x-ray, normal procedure at 4am Sunday morning! Had a very disturbed evening as you will know if you are following my blog.
Anyway, feel more normal today. The anti-sickness tablets are amazing and I have never felt sick or nauseous. My body does feel a bit heavy, as I am typing my arms really just want to flop by my side.
Counts yesterday were hb 8.5, platelets 25, neuts 0.06 so I am thinking I will need hb and platelets transfusion either today (once my results come back) or tomorrow.
3 docs came in today! They expect my neuts to stay low for another week and then come back up so I reckon at least another 2 weeks in here.
Oh and my hair has started to fall out, boo hoo!!! I just did a bit of therapeutic shopping and bought a couple of scarves to go with an Anna hat that I ordered. The hat hasn't even arrived yet, lol!!!
So folks, I hope you are all well. I'm doing ok, not as bad as I expected!
Love
Jayne xx
Jayne
Feb 2011 MDS RCMD. Jan 2012 RAEB.
Feb 2012 - 2 lots of chemo each 4-6 weeks in hospital to destroy leukaemic cells resulting in remission from AML.
July 6 2012 - Stem cell transplant
Doing very well, feel great
Age 43.
chris
Posts: 754
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: My Journey - Jayne

Post by chris » 13 Mar 2012 17:50

Hi Jayne

I will reply on this forum as I expect people on here are more interested in your counts than the uninitiated!!! You have so many posts on your blog now. You must have to spend all day reading them! So lovely isn't it? I get a warm feeling just reading them all.

Being the knowledge freak I am, I was interested to know what your blast count was when you had your shock appointment in January and what it is now as that is why they are doing the chemo - to reduce them in preparation for your transplant? The other counts being lowered is a casualty of that but they seem to be keeping a close eye on you and treating you promptly when your temperature goes up. Yes, I think that the risk is more from bacteria within you that normally your body keeps at bay but which can overwhelm when your neuts are so low. Having said that, you still don't want to risk any kind of infection so all your visitors need to stay vigilant.

Sorry about your hair and hope the scarves and hat arrive soon.

Bye for now

Chris
Chris.Trustee,Patient Support Ambassador (Essex) (F) Age 73 (2023)).Diagnosed in 2008. CMML-1. Normal red cells, low white cells & platelets, slightly raised monocytes. Enlarged spleen. Not had any treatment - active monitoring 6-monthly.
Jayne
Posts: 194
Joined: 16 May 2011 11:33
Contact:

Re: My Journey - Jayne

Post by Jayne » 13 Mar 2012 19:29

Hi Chris
When I was first diagnosed in Feb 2011 I had 4.8% and in Jan 2012 I had 8.9% blasts.
Would be interested to hear your thoughts!
Jayne
Jayne
Feb 2011 MDS RCMD. Jan 2012 RAEB.
Feb 2012 - 2 lots of chemo each 4-6 weeks in hospital to destroy leukaemic cells resulting in remission from AML.
July 6 2012 - Stem cell transplant
Doing very well, feel great
Age 43.
Jayne
Posts: 194
Joined: 16 May 2011 11:33
Contact:

Re: My Journey - Jayne

Post by Jayne » 13 Mar 2012 19:42

Hi Chris
When I was first diagnosed in Feb 2011 I had 4.8% and in Jan 2012 I had 8.9% blasts.
Would be interested to hear your thoughts!
Jayne
Jayne
Feb 2011 MDS RCMD. Jan 2012 RAEB.
Feb 2012 - 2 lots of chemo each 4-6 weeks in hospital to destroy leukaemic cells resulting in remission from AML.
July 6 2012 - Stem cell transplant
Doing very well, feel great
Age 43.
chris
Posts: 754
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: My Journey - Jayne

Post by chris » 13 Mar 2012 23:07

Hi Jayne

Well, I guess that's why you didn't mention the blast count previously as I understand that anything under 5% in the bone marrow is considered "normal" i.e. levels below 5% present no greater risk in terms of prognosis when taken into account with your karyotype (chromosomes) and your blood counts. You were clearly just under the limit in Feb 2011 and so were still classsified as low risk RCMD. (I presume your karyotype was normal - not sure if you had mentioned it or not or if I have forgotten?!).

A range of BM blasts between 5 - 10% gave you another 0.5 on the IPSS score table which probably tipped you from low-risk to Intermediate-1 risk and into the RAEB I category; as such, I understand the protocol is to go for early stem cell transplant which is more likely to be successful if carried out early in the course of the disease. So I would think the plan is to reduce your blasts with the first couple of courses of chemo and then proceed with the stem cell once they are within lower limits? I'm sure your Prof or the medical staff will keep you updated on the progress of the blast elimination and the sort of levels they are hoping to get them down to.

You are doing so brilliantly. I'm so glad that all the meds and complementary therapies are keeping you feeling well and I hope your heavy arms can still type away on your various Forums!!

A close friend of mine has just had chemo, lost all her hair but now it is growing back curly! She has always had long dark hair and now it is grey (she had coloured it!) and short but still very attractive so I'm sure you will still look great.

Take care. No having it large in Jimmy's! (My godson trained there as a doctor!)

Chris
Chris.Trustee,Patient Support Ambassador (Essex) (F) Age 73 (2023)).Diagnosed in 2008. CMML-1. Normal red cells, low white cells & platelets, slightly raised monocytes. Enlarged spleen. Not had any treatment - active monitoring 6-monthly.
Sheldon

Re: My Journey - Jayne

Post by Sheldon » 13 Mar 2012 23:25

Hi Jayne
realy sorry about my silence, have spent most of my time over the last few weeks at work- have been readinng all your posts, and am most impressed, and wowed by your courage and progress.
I hope cabin fever is not taking over, will try and send you some pics of the ouside world. Have you looked in flickr, great photo's every day.
Amazing.
Keep it up
Love and wishes
Sheldon
Jayne
Posts: 194
Joined: 16 May 2011 11:33
Contact:

Re: My Journey - Jayne

Post by Jayne » 14 Mar 2012 11:51

Dear All

Chris - you are spot on. 2 lots of chemo to reduce blasts and then straight to stem cell transplant, well I have a 1 month break after 2nd lot of chemo!! My chromosones are normal. Out of 6 months I will be spending approximately 4 months in hospital.

Oh my hair is really coming out! I'm in a dilemma. The kids are coming at 4.30pm so I am definitely trying to keep my hair for then, but I think after they have gone I may have to shave it cos it is just going everywhere, yuck!! They are not prepared for seeing me without my hair today. I know I have my wig and various hats but I haven't prepared them and I dont want to shock them.

Counts today are Hb 7.7, Platelets 13 and neuts 0.02. Have Hb and platelet transfusion today.

I also have to go for an ultrasound scan because one of my veins in my groin is very inflammed and bruised looking and sore. It does feel like a groin injury.

Feel knackered but my head is still in a good place!

My arms are even heavier today and feel rather shaky, I'm sure I will feel on top of the world after my transfusion!

Take care all
Jayne
xxxx
Jayne
Feb 2011 MDS RCMD. Jan 2012 RAEB.
Feb 2012 - 2 lots of chemo each 4-6 weeks in hospital to destroy leukaemic cells resulting in remission from AML.
July 6 2012 - Stem cell transplant
Doing very well, feel great
Age 43.
Post Reply

Return to “Our Stories”

Who is online

Users browsing this forum: No registered users and 38 guests