A bit of a quandry!

[Jayne]

Hi All

Well I have been feeling a lot more tired recently and I feel that the time is coming for me to do something about it.

My latest blood test (taken on Monday), revealed that my Hb has dropped to 75 or 7.5 depending on the scale so that explains my feelings.

The problem is, I dont know what to do! So, I emailed my Prof this morning telling him I was tired, a bit teary and felt like I needed some help. He hasn't replied as yet but that is ok as it can sometimes take a couple of days for him to reply.

At the moment I have been offered 2 treatments, a stem cell transplant (I have an excellent donor ready) or ATG (rabbit). I have emailed Sophie re the ATG treatment and am waiting for a reply.

Between the two I just dont know what to do. My friends and my husband tend to not like the ATG route but I think this is because it is a bit strange and also because of the risk of organ damage/failure they are concerned I wouldnt be able to go to stem cell transplant in the future. I suppose I need to find out how big a risk this is.

So, hear I am at work feeling a bit sorry for myself I think and really all I want is my bed. It's rubbish!

Anyway, we are going away this weekend to a wooden lodge between Bridlngton and Flamborough Head. I love the sea and it makes me feel calm. The kids are coming too, I am so pleased they are as I thought my eldest wouldnt want to come, but this does mean the break will not be as restful as I woudl like,

Jayne

[Jayne]

Well here I am replying to myself!

Just thought I would update you. My prof has said I need a transfusion soon, within the next couple of weeks and thereafter probably every 4 - 6 weeks whilst we work out what we are going to do long term!

Cant wait to feel all bouncy again!

x

[janetstanford]

Hello Jayne

Yes you will be confused at the moment you must be feeling very tired as you know i am transfusion dependent and have been since day 1 and after treatment ...

i do not know anything about AGT maybe you could post a bit more about this subject so i have an understanding of it the damage it may cause ect ...also i have always been told that in certain circumstances a BMT is last treatment /resort i can only give you advice based on myself ( which may not be right for u) but which may give you questions to ask your doctor

Epo (i had 2 lots of this did not work for me) this may encourage blood production can be given small or high dose daily weekly ect
transfusions i think this is a quick win for you in your situation i have had these for 3.5 years thing to watch here is iron overload i take Exjade daily a post earlier in the week said a member had met a person who had been having transfusions for 14 years in fact RODNEY (who supports and campaings for MDS ) had transfusions for 8 years i believe and then opted for the transplant....
then there is the lenthiomide (spelling) trial may be worth asking about
The BMT i have been told that this will happen when / if my marrow fails or the NHL comes back ( living under threat )...
i believe the best choice is the one(s) which give us more time that is what we all hope for ...he may be able to put a long term plan in place do this then that ect
But on advice from your doctor it is what is best for you and your family
i do hope you have your ist transfusion soon i had mine tuesday so feel fit at the moment trust me it will make a difference i think you will be surprised at how much
please take care if you need to ask a question you know how to get me Janet

Quick note to all regarding posts and advice to others:
Please remember that every patient's MDS is different - and what might be appropriate for one person - may not be for another.
May I suggest you only talk about treatments you are on personally - or have been on. You therefore have a certain experience with it - which is YOUR experience.
It will be quite confusing to others to quote a drug name which is spelt wrongly, or where no other information is given.
For example - the drug that Janet refers to is Lenalidomide - used for a specific sub-type of MDS: 5q- also called del 5q.
Clinical issues or recommendations must be carefully discussed with your own physician.
So in the interest of keeping a clear forum - please only post about your own experience, or if you have received appropriate guidance and information from your physician.
Thank you.
Patient Liaison

[Jayne]

Me again!

Well things are moving fast! I am seeing my prof and the clinical nurse next Wednesday, they will take my blood to match for a transfusion and then I will go back in on Thursday or Friday for my transfusion, probably 2 units. At the meeting on Wednesday we will decide a plan of action!

Janet - ATG is where they get a rabbit, inject it with human cells, the rabbit has a reaction, antibodies are collected and purified and injected into me. I have a reaction (bad - rigors, chills etc) and feel very poorly for about 2 weeks but will need about 8 weeks off work. Around 6 months later they will know if it has worked and if it has, my immune system will stop attacking my bone marrow and allow it to make me good blood for around 2 years. It is a nasty treatment, there is a risk of organ damage/failure, but all the while they are giving me drugs to prevent this happening. My worry is that if I have any sort of organ damage then this might ultimately prevent me from having the stem cell transplant. Definitely one to discuss. In America they also use horses!! But they have been stopped in Europe, not sure why. I found a report done in July this year (in America) that said if you are offered ATG then choose horse as it is proven to be more effective with MDS. Cant really imagine a horse having an allergice reaction under lab conditions, much easier to control a rabbit I suppose....either way it doesn't float my boat!!

Jayne

[janetstanford]

Jayne
hmm info for thought yes i would have to think several times about that 1 when it was first noted on the forum i did wonder why my doc had not mentioned it to me mind he is not the risky type watch and wait is his chant ....
rabbit or horse neither sounds ideal but if they say horse is better then horse i think it would have to be .....
before and after treatment my marrow was just about nil i was producing nothing slowly but surely it has grown back(minus blood) this was not expected and he has watched and waited and as i also have iron overload which if left can cause organ damage guess i did not need a double threat ....
your bloods on Wednesday they will do a count but also a cross match but remember you will have to have transfusion within 24hrs of the cross match blood bank will not allow if over the time limit ...i also think you should ask for your retiulocyte(spelling) count to be done as well ...this is the age/amount of immature blood/hb normal is 50/80 monitor this as if treatment works this count will increase (mine is 5 which is low but would you believe this time a year ago it was 2.7 )......also remember after 22 units transfused you will need exjade or similar to combat the overload ....
well hope this helps i have to say you are brave going away for the weekend as if i was below 85 things would be sooo hard i would in bed
any questions u can find me need to be off to watch DIY SOS love that Nick Knowles a Billy and co
take care janet

Important note
Another quick note - regarding iron overload and iron chelation
This again is very individual - not everybody will need treatment for iron overload after a specific number of transfusions. There are broad guidelines regarding iron chelation - where many more important other aspects are considered.
Sorry Janet to pick at aspects of your messages - as you are such a fantastic contributor to the message board - and offer such great support to others.
Just trying to steer things into the right direction every now and then.
The forum is extremely important - but absolutely needs to stay within the boundaries of an exchange of personal experiences.
Thank you all generally for the fantastic messages - and great support you offer each other - please keep it up!
Patient Liaison

[janetstanford]

Jayne
see comment Graham cmml specific treatment epo he is new member this may help you on wednesday
Janet

[Jayne]

Thank you Janet, lots and lots of useful information, so honestly thank you very much.

I do know epo wouldn't work for me as my kidneys are doing a good job of calling for whatever it is they call for, and my bone marrow does respond, it just makes rubbish stuff!

I didnt realise about the 24hr time limit, maybe that means my transfusion will be Thursday and not Friday, helps to know that. I am supposed to be on a course on Wednesday, I can see the Bexley Wing from where the course is! Priorities mean that the course will be forgotten!!

My children do not know yet of the change in my circumstances, dread telling them to be honest, Jess will throw a right wobbly!!! We have decided to update them on Wednesday after the hospital visit as we will probably have something more firm to tell them. I will focus on the positives and let them know they will have a full of energy Mum for Christmas, we plan to go ice skating on the 9th!! Seems crazy I know when I feel like I do. Hey ho, I am trying so hard to not to disrupt their childhood and I behave normally because I dont want them to worry.

My mum said she has noticed my deteriation during the past couple of weeks.

It's all a bit sad.

Jayne xxx

[janetstanford]

HI Jayne

Kidneys yes epo i had first lot when my kidneys were working overtime still clearing out the chemo (which i have read can take 5yrs in cases ) they have been normal now for some 18mths ...but he did give me another course around the same time he said if would do no harm and may work ...kidneys produce hormone which tells the marrow to produce blood mine has either lost its voice or forgot

Children mine similar age as yours at the time it hurt to have to tell them such serious news but i was always honest with them in a simple way but that did not last long as both are egg heads when it comes to science my son did a level chemistry and my daughter is doing 4 a levels in chem biol and physics ....you can only only tell them what treatments and this is what happens and mam will better they would worry more if you did not and i agree wednesday is better as you need time to get used to the idea first

take care Janet

[Jayne]

Hi Janet

Well I am just about to go away. More or less all packed...it looks like we are going away for a month!!!

The kids do know I am poorly and what the future holds treatment wise, I think we all just hoped that it would be 2 or 3 years away. So really all I need to tell them is it's a bit sooner. The bouncy mum for Christmas is a bonus!

Well that is me until Sunday, will catch up with you all then. I could access from my phone but I cant remember my password. My computer automatically logs me in, and my old phone did but I just got a new one and its a pain where the internet is concerned. I need to have a play with it.

Anyway, I'm off to the seaside.......

Take care all, have a good and safe weekend.

Jayne xxxx

[Sheldon]

Hi Jayne
Its only a few weeks sice I posted my own firs hi and you and Janet jumped staight on to give me a welcome, so it is a bit upseting to hear that you are having problems. I don't know enough to give advice about medical issues, just hope that youwill keep posotive as that is probably the best medecine there is.

I'm sure everyone on the forum has you in their thoughts and prayers, and hope that will help give you strenth.

Have a great time away

Sheldon