In hospital :(

Amber, at least you are not showing signs of bleeding and bruising. Take care of yourself!

amberyard wrote: Oh and the doctors office said no shaving?? I'm not stupid and been shaving for over 20 years....???

Right after I was diagnosed, I was told not to shave until my counts were at stable levels.

Amber,

I wish I could give you some of my platelets! I could split them and we would both have 10.

Thinking of you lady!

Jeffrey

4k today and they had platelets waiting on me so got them and I was in and out.

Was walking out the door of the infusion center (they took my IV out today) and was waiting at the elevator when I felt something wet on my arm. Looked down and was bleeding every were, well went back in and the wrapped the hell out of it and now I'm home and everything is fine. Ate an early lunch since I have to take my Promacta at 2pm and watching TV with the dogs.

Amber,
Do the doctors feel that the Promacta is going to help you at all? Was just wondering since your platelets are still staying so low.

DeeDee

Its only been 9 days on Promacts, it can take up to 4 weeks to work.

Were you on Promacta before?

He had me on it months ago but only for 2 weeks.

9k on Sunday and 4k this morning, but days platelets. Getting to the end of my robe with all this. Seeing doctor on Thursday to see what he has to say about things....

I haven't been on this forum for a while (but have made up for that today!). Read this thread all the way through and my heart goes out to you... you are having a rough time! And that is an understatement!

Hope you're still pretty symptom free if nothing else. And I hope you get some answers on Thursday from your haematologist. Your posts sound so positive though - try to hold on to that, hard as it is with low counts

Amber, I am thinking about you, too. As long as your symptoms are okay (not a lot of bleeding or bruising), I would think you would be okay. Just remember, you are in my thoughts and prayers.

thank you to both!!

No symptoms since the last Vincristine, its just getting really old going to the infusion center every day.. Its hard to stay positive, I'm really think of seeing what the doctor has to say and if its not really feasible for me just going ones a week to infusion for counts and or platelets. Been staying around 3-9 but I don't know what will happen if I stop getting the platelets and maybe that is something we need to find out??

Yeah - its hard to stay positive... And even harder I imagine with daily trips to the hospital/centre. This is just a thought (& more experienced members may blow this out of the water) but if you're having daily platelet infusions, and your body recognises platelets as "foreign bodies", then perhaps high numbers from infusions actually escalates or maintains a very high immune response, destroying them all the faster????? I know my numbers have always dropped most dramatically following higher counts (after ivig etc).

Like I said, just a thought, but if you're thinking you might have a break from the transfusions anyway it could be worth considering? On the other hand, my count is just 13 today, so feel free to ignore me - I may know nothing

Good luck with your appointment hun x

Katsim

This has come up before and yes that is one thing I want to talk to my doctor about. Was thinking of canceling tomorrow and Wednesday, because I need a break but on the other hand I don't want to hurt myself. I just don't know what to do, I've seen where people can live with low numbers. But no one so far is under 10k, anything about 10k would be fine with me.

Amber,

I've heard from a couple of people who were living with platelets at about 5K; one person's
platelets were even at 2K. The platelets stayed that way for 2 years for the one young lady. She was on this forum for a while. When my platelets were below 5K, I was really careful what I eat--I followed the recommended list. So, I didn't get much bruising or bleeding during that time.

Just wanted to let you know. It's hard to know what to do.

Amber,

How are you doing today?

Jeffrey

DeeDee Marie

Thanks that does really help and make me feel better.

Jeffrey71

I am at 4k today and yesterday 3k, don't know what is doing it treatments kicking in? But I would think my counts would be going up more, its been two weeks since last Rituxan. I see the doctor on Thursday and go back to the infusion center tomorrow at 7:30am. I am going to have a hard time going to infusion center this weekend due to the fact there is a festival near my house. Getting there won't be a problem its getting home. I haven't had any symptoms since the last Vincristine which was 2 weeks ago.

Amber,

It's ok! It is somewhat stable now. How do you "feel"? And do you keep a journal of treatments and counts and such? I would suggest that especially for you.

Now, for the festival and getting back and forth with ease. If I was you I would call the local police department and tell them about your issue and I bet that they would be more than happy to help you. I bet that you could call them and that would pick you up and bring you home!

In my youth I had them pick me up a couple of times! LOL They were very happy to offer me a ride! Nice guys! LOL

I hope I made you smile a bit!

Jeffrey

Jeffrey

I don't know if the local police would help, I live in a good ole boy town. I mean I could get there and back but would be sitting in traffic ( it takes me 15mins to get to work and 15mins to get home) on festival weekend it takes an 1 1/2 to 2 hours to get home.

I'm sure the neighbors would love it (I'm 32 and covered in tattoos) the good ole boys don't really like me much due to the way I look. But on the other hand I do have some clients that work for the police department and are always nice to me.

Amber,

I live in the same kind of town. Just ask and if they can help, ask the fire department guys. And if one of the female officers is a redhead, call me. I am not feeling too well! :blush: :blush:

Stay in touch lady. You have certainly been dealt a crappy hand, but you know with ITP it can change for the better fast too!

Jeffrey

5k today

I do and have kept up with everything, and here it is.

Last week count was at 35k and 5mcg/kg. I'm sure this week will be 6mcg/kg but I don't know what the numbers will be like.

04/27/12 7,000 ER- Pred 30mg BID
05/04/12 32,000 Oncologist Blood in urine- UTI
05/21/12 16,000 Bone Marrow/ Still on Pred 30mg BID
05/25/12 23,000 HIV/Hep B-Test NEG
06/01/12 21,000 Rituxan
06/0812 23,000 Rituxan
06/15/12 32,000 Rituxan
06/22/12 25,000 Rituxan
06/29/12 59,000 Rituxan
07/06/12 58,000 Rituxan
07/13/12 56,000 Rituxan
07/20/12 63,000 Rituxan
09/20/12 105,000 Roth
11/01/12 99,000 Roth
01/10/13 77,000 Roth
02/28/13 83,000 Roth
05/16/13 32,000 Roth
05/23/13 14,000
05/24/13 17,000 ER Hospitalized
05/25/13 35,000 Hospital
05/26/13 40,000 Hospital
05/27/13 164,000
05/30/13 134,000
06/05/13 52,000
06/12/13 26,000 Promacta
06/07/13 116,000
06/26/13 113,000
07/01/13 19,000
07/08/13 102,000
07/17/13 52,000
07/24/13 14,000
07/31/13 17,000
08/01/13 24,000 N-Plate
08/08/13 30,000 N-Plate
08/15/13 35,000 N-Plate
08/22/13 22,000 N-Plate
08/29/13 15,000 N-Plate Dex 60mg for 4 days
09/05/13 105,000
09/11/13 15,000 Start Dex 40mg
09/12/13 7,000 am steroids, platelets ER Dex 40mg
09/12/13 8,000 pm platelets, IVIG's room 4053 Dex 40mg
09/12/13 1,000 pm platelets, IVIG's room 4053 Dex 40mg
09/13/13 1,000 am platelets, IVIG's room 4053
09/13/13 2,000 pm double bag of platelets room 4053
09/14/13 29,29,30,000 checked 3 times room 4053
09/16/13 7,000 steroids and platelets
09/17/13 8,000 steroids and platelets
09/18/13 7,000 Rituxan, steroids, Vincristine, Platelets
09/19/13 15,000
09/20/13 7,000 Platelets 0- double bag
09/21/13 4,000 Platelets A+
09/22/13 1,000 and 28,000 before and after Platelets O+
09/23/13 1,000 and 41,000 before and after Platelets A+
09/24/13 1,000 Platelets O+ Platelets
09/25/13 2,000 Platelets O- Rituxan, Vincristine Platelets
09/26/13 8,000 Platelets O- 2 bags
09/27/13 3,000 Platelets O+ double bag
09/28/13 2,000 Platelets A+ double bag
09/30/13 1,000 Platelets O-
10/01/13 6,000 Platelets A+
10/02/13 13,000 Rituxan, Vincristine
10/03/13 2,000 Platelets O+
10/04/13 4,000 Platelets O+
10/05/13 5,000 Platelets O+
10/06/13 4,000 Platelets O-
10/07/13 19,000 oh yeah, crab boil the night before
10/08/13 4,000 platelets O-
10/09/13 2,000 platelets O+
10/10/13 15,000 last of Vincristine
10/11/13 2,000 O+ Platelets, Promacta 75mg
10/12/13 3,000 O+ Platelets, Promacta 75mg
10/13/13 2,000 O+ Platelets double bag, Promacta 75mg, Juicer pm
10/14/13 7,000 O+ Promacta, Juicer, Promacta 75mg
10/15/13 19,000 Promacta, Juicer, Promacta 75mg
10/16/13 5,000 O+ Platelets, Juicer, Promacta 75mg
10/17/13 8,000 O+ Platelets, Juicer, Promacta 75mf
10/18/13 8,000 Shortage of Platelets, Juicer, Promacta 75mg
10/19/13 4,000 B+ Platelets had them waiting on me, Juicer, Promacta 75mg
10/20/13 9,000 B+ Platelets, wasn't feeling very well, Promacta 75mg
10/21/13 3,000 O+ Platelets, Juicer, Promacta 75mg
10/22/13 4,000 B+ Platelets, Juicer, Promacta 75mg
10/23/13 5,000 O+ Platelets, Juicer, Promacta 75mg

Roth is my family doctor, he does my blood work for me when needed.

Just curious, are you actively bleeding somewhere? My daughter has gone for up to 3months with counts around 5K. She even goes to school. She is just extra careful and the school knows about her ITP. She only gets treated when she has breakthrough bleeding or her fatigue becomes too much. When that happens she receives IVIG. This usually keeps counts up for 2-3 weeks before they plummet back to nothing. She is 15. ITP x almost 3 years. She has never required or received a platelet transfusion.

On a side note, I keep a spreadsheet to track my daughter counts and treatment.... It looks a lot like yours. It has bome in handy though with primary care follow up and also take it when we go out of town "just in case".

Lori

No symptoms since last hospitalization (12 hour nose bleed). Month blood blister with the last Vincristine but nothing since. I have a doctor appointment on Thursday and yes I was thinking of doing the same thing. Just be very careful, I work at an animal hospital (office manager, no longer work with animals themselves). But the only thing I find after working I am very tiered when I get home, don't want to cook or anything.

Keeping up with everything has always been what I do. If I don't keep up with it I don't know who will, just like when I go to the ER (I'm educating the doctors on what ITP is).

Lori

Where are you located at I'm in the US Georgia. (no insurance)

You are in a tough situation. Don't get me wrong... I am not much of a political person BUT we ALL deserve to have access to health care. And, by that I mean the best treatments EVEN if they are expensive. AND, this is an expensive diagnosis to treat! I am an RN and I have seen this issue on the medical provider side but have never been on the other side of the fence until my daughter was diagnosed. Now I feel EXTREMELY blessed to have good health insurance.

I am located in Kansas City. My daughter is exremely fortunate to have a hematologist that specializes in ITP and actually does ITP research.

Maybe you should look into a research study??? My daughter is in a phase II study for Nplate. It is almost complete and the hematologist has already asked us to have her move to the phase III trial. My daughter is actually paid a stipend to show up to appointments and all costs are covered under the study.

I wish you luck.

Lori,
That is a positive note that your daughter has gone 3 years with only IVIG as her treatment. I was telling Amber that there have been others who posted the same thing--as long as the symptoms are not bad. The symptoms are the main thing that we worry about.

For some reason some people just can't get their platelets up. I've also heard of some who have gone years with a remission, then their platelets fall and won't budge. We just never know with ITP.

Actually my daughter has been treated with Winrho, prednisone, rituximab without success. IVIG seems to be the only thing that will bring her counts up for a short period of time.

I agree... treat based on symptoms and/or activities. I always make sure my daughter's counts are up to at least 20K to travel out of state. I don't want to get got with her having a problem away from home. And if we fly... Our doc wants her above 50K.

Amber

I am someone who lived with counts in the single digits for a while. I worked and lived and raised kids with single digits.

Praying the platelet counts rise for you!


OK now the real reason for this post you said you had Tattoo's? How many and of what?? I love tattoo's wanted them all my life. Although I just started getting tattoo'd this year and i'm not near done I actually have 3 in the planning.