Low counts and fear of the future

[Julianna]

Hi everyone. Haven't been here for a while. I'm a little bit stressed (well actually that's an understatement). Sorry if this all comes out quite dramatic...but that's me. And I'm a bit scared too.

I had my first platelet transfusion today. Had to travel 4 hours round trip to just get treatment that I really needed. I've been sick with infections during the past year which for some reason depletes my red cells, so I need them too. But only sometimes. The rest of my days I seem really well.

But I live so far from the city hospital - the only place I can get platelets. And that scares me. It was a really close call yesterday, but I'm glad to be safely home now filled with fresh platelets!

I read somewhere about very low platelets being a poor prognosis. Bleeding being a main cause of death. Is this something should be worried about? Of course, most people would say that worry doesnt add one day to your life. So don't worry. But I'm plainly....scared. Would I know if I'm bleeding inside? What does it feel like?

I had a really bad sleep last night. Worried about these things. Hope to sleep really well tonight, being saved by my platelet transfusion.

I don't know how I can keep living like this. The uncertainty will probably kill me before the disease! I've been so stressed out. Feel sick with anxiety.

Thanks for letting me vent. Does anyone know what I'm talking about? And what do you do to keep calm over such LONG periods of.....up and down, sickness and wellness. I don't know how much of this I can stand.

But I guess you just have to. Day at a time hey? Thanks.

[Sally C]

Hi Julie,
I can only imagine your concern with the hospital being so far away. And worries in the midde of the night are always so magnified!
My husband's oncologist told us that she has patients who exist with only 1,000 platelets - they won't go any higher - and the patients are doing fine. It's amazing how the body can adjust.
I don't know if you have clinical trials where you live or if you have access to GlaskoSmithKline, but Promacta (Eltrombopag) has worked miracles with my husband's platelets and red cells. I have gone into more detail about his success under "Clinical Trials". Glasko does have programs to help patients obtain this drug for trial. You might want to look into this.
I wish you well and am sorry for your illness and especially your mental distress.
Take good care,
Sally

[Birgitta-A]

Hi Julie,
You know the platelets can be of good quality - then the counts can be very low. Then they can be dysfunctional as mine are. When they are low - less than 25 - I get petecia (small bleedings) around the eyes, blood blisters in the mouth and traces of blood from the nose.

The most important thing when the platelets are low is to avoid everything that can decrease them for example infections. You have had infections the last year. Is there some way to keep away from infected persons? Then many drugs for example all painkillers can decrease platelets.

I understand that you are afraid - in fact it was my low platelets that made me accept treatment with Thalidomide after 4 years of supportive therapy.

Bleedings often come from the stomach or intestines. It is not difficult to see that - if the stool is black there can be a bleeding from the stomach (black due to the acid) and if it is red there can be a bleeding from the intestines. Brain bleedings give stroke symptoms. Many women have low BP and don't easily get brain bleedings.
Kind regards
Birgitta-A

[Julianna]

Thank you for your replies. My platelets were 13, and I thought that would be ok. And you're right about the quality of the platelet. My quality isn't that great. They need to manually count them most the time! Because they are strange shapes.

I guess the concern is always falling lower. So best to be safe. Over 20 is good! Under 20 and my Doc watches carefully. At least I feel cared for by my specialist. I called Melbourne hospital, they paged my Dr, then she called me back. Quite quickly. I was at the local hospital at the time. They were helpful too. But it just worried me when everyone else is worrying around me! At least it's dealt with, for now. Watch and wait once again.

I'm glad you guys are here to bounce things off!

And about the drugs/treatment you're talking about... I'm often not eligable for clinical trial because of my AA history and treatments. My MDS is classed as secondary. But they may be using drugs here in Australia for platelet production in anyone who needs them. Looking forward to my next visit to my specialist. Lots of questions!

[Sally C]

Hi again Julie,
I'm glad Birgitta answered your main questions about bleeding. That hasn't been an issue with my husband even though his platelets got as low as 4,000 at one point and stayed in the teens for a couple of years. He did have petechia but no bleeding. Obviously with the bleeds that Birgitta has had, the effect of low platelets varies with each individual as does everything with these diseases.
As far as Promacta and a history of AA - at the National Institutes of Health they first had trials with their AA patients before they did MDS. So I wouldn't think Glaxo would have a problem with your AA history. Also my husband received Campath in 4/09 so at least some prior treatments are accepted as well.
Just wanted to put this in the mix.
Take good care,
Sally

[aussie danielle]

i am sorry to hear your so stressed im afraid i cant help you with your queries but i can say i have felt like you do for a while now and its horrible.myheart goes out to you.i try to go for walks get interested in the computer and i try to read ...i wanted you to know your not alone although there are days i feel that way too.I hope it helps you to know there is an aussie lady in a small country town in queensland australia who cares enough and midnight when she cant sleep to say hello to you and hope you have a lovely day, the day you read this..take care Juliania aussie Danielle

Originally Posted by Julianna

Hi everyone. Haven't been here for a while. I'm a little bit stressed (well actually that's an understatement). Sorry if this all comes out quite dramatic...but that's me. And I'm a bit scared too.

I had my first platelet transfusion today. Had to travel 4 hours round trip to just get treatment that I really needed. I've been sick with infections during the past year which for some reason depletes my red cells, so I need them too. But only sometimes. The rest of my days I seem really well.

But I live so far from the city hospital - the only place I can get platelets. And that scares me. It was a really close call yesterday, but I'm glad to be safely home now filled with fresh platelets!

I read somewhere about very low platelets being a poor prognosis. Bleeding being a main cause of death. Is this something should be worried about? Of course, most people would say that worry doesnt add one day to your life. So don't worry. But I'm plainly....scared. Would I know if I'm bleeding inside? What does it feel like?

I had a really bad sleep last night. Worried about these things. Hope to sleep really well tonight, being saved by my platelet transfusion.

I don't know how I can keep living like this. The uncertainty will probably kill me before the disease! I've been so stressed out. Feel sick with anxiety.

Thanks for letting me vent. Does anyone know what I'm talking about? And what do you do to keep calm over such LONG periods of.....up and down, sickness and wellness. I don't know how much of this I can stand.

But I guess you just have to. Day at a time hey? Thanks.

[Julianna]

Thanks so much Sally and Danielle.

I do appreciate hearing from another Aussie! I'd love to hear more of your story. I'm actually from Qld myself. Born in Brisbane and lived there most of my life until a couple of years ago. The Royal Brisbane is a great hospital. So is the Royal Melbourne. Where do you go for treatment/appointments? I'm sorry you can't sleep. Must be something in the air.

Hope to talk soon. Julie