Remember Me     Forgot Login?   Sign up   •  Web site Help & Info

!!! DISCUSSION GROUP RULES !!!

1. You must be a registered website user in order to post and comment. Guests may read only.
2. Be kind and helpful, not rude and cynical.
3. Don't advertise or promote anything. You will be banned from the group.
4. Report problems to the moderators. THANK YOU!

From Roller Coaster to Big Dipper! on Promacta!

More
15 years 3 days ago #733 by snowgoose
My journey on the the roller coaster, that is ITP, has been going for 6 years now. This week I entered the Big Dipper phase of the ride!! :silly:

Last Monday I had surgery, and was admitted the day before for an Intragam infusion, as platelets at 20 were too low for surgery, despite being on 50mgs of Promacta/Eltrombopag, as part of trial for past 3 years. Next morning, platelets were 120, so surgery went ahead.

I was discharged Wednesday, and platelet count was 89, so thought Intragam was wearing off.

I had my weekly platelet count yesterday and my count was 577!!!!

My trial nurse ordered another urgent count today, to see if it was a true result, and lab ladies came to me, as I am still recovering from op. Very impressed by the speed they arrived in, only 45 minutes from phone call to visit!!

Today's result was ...........up even more to 648!!!!!

Now I have to stop the Promacta/Eltrombopag until count is back down to below 150, and I am back to weekly visits to the hospital :blink: :woohoo: :huh: .

Not feeling great at the moment :( .

The ride continues, with bigger hills and deeper valleys.

Vanessa

Please Log in or Create an account to join the conversation.

More
15 years 3 days ago #734 by alisonp
Replied by alisonp on topic Re:From Roller Coaster to Big Dipper!!!
Wow, that is definitely the big dipper!!! Is that what the infusion usually does?

Ali

Please Log in or Create an account to join the conversation.

More
15 years 3 days ago #735 by snowgoose
Replied by snowgoose on topic Re:From Roller Coaster to Big Dipper!!!
Hi Alison,

The funny thing is that prior to entering the trial, I was beginning to become refractory to Intragam with only a a very small, short lived response. So, I was wondering how effective it would be!! ;) :huh:

Please Log in or Create an account to join the conversation.

More
15 years 3 days ago #736 by snowgoose
Replied by snowgoose on topic Re:From Roller Coaster to Big Dipper!!!
I have put this in the wrong forum!!! I blame the high count!!!
Sandi, if you are reading this, could you please move it to treatment general please!!?

Thanks :)

Vanessa

Please Log in or Create an account to join the conversation.

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
15 years 2 days ago #753 by Sandi
Replied by Sandi on topic Re:From Roller Coaster to Big Dipper!!!
Wow, Vanessa! What a huge jump! Wonder what that's about? Too much to hope for, but wouldn't it be nice of they level off and stay there?

What was the surgery for (you told me, but my mind is empty these days)?

Please Log in or Create an account to join the conversation.

More
15 years 2 days ago #761 by tamar
Replied by tamar on topic Re:From Roller Coaster to Big Dipper!!!
Vanessa, I was afraid from your subject line that you had a big dip. I'm pleased to see it was an inverted dip!! :cheer:

Please Log in or Create an account to join the conversation.

More
15 years 2 days ago #762 by snowgoose
Replied by snowgoose on topic Re:From Roller Coaster to Big Dipper!!!
Today's count is...........................755!!!!!!!

My Dr and my Haematologist both feel that the huge rise is a combination of surgery/anesthetic, Intragam, and a cellulitis infection internally in op site, which I found out I had today :( !!

Hence feeling so unwell! Had stitches out today.

I have to have a platelet count everyday at home, until count is under 150 ;)

I am waiting for Haematologist to ring re starting treatment for Thrombocytosis.

I have seven hospital appointments in the next week! My head is spinning!

Sandi, I can really relate to the blank mind effect :S ! The op was an umbilical hernia, and was very big! So the surgeon said!

Tamar, I used the term big "Big Dipper" after the ride at Luna Park in Sydney, by the Harbour Bridge! We went there often growing up :laugh: .

Have stopped Eltrombopag.

What will tomorrow hold????

Vanessa

Please Log in or Create an account to join the conversation.

  • Angel85
  • Offline
  • I am 27 years old from Australia and I have T.A.R Syndrome. My email address is not showing on my profile for some reason so it is blossom_242@hotmail.com for anyone who wants to send me an email.
More
15 years 2 days ago #763 by Angel85
Replied by Angel85 on topic Re:From Roller Coaster to Big Dipper!!!
Wow, i have never heard of a count that high, especially for someone with ITP, Hope your platelets go back under 150, but not much under that soon!! We want them to stay high, but not that high lol!!

Please Log in or Create an account to join the conversation.

More
15 years 2 days ago #764 by snowgoose
Replied by snowgoose on topic Re:From Roller Coaster to Big Dipper!!!
Thanks Lauren :) . I fell like a walking, talking contradiction at the moment! I missed you on the Aussie Chat, hope you can make it sometime :) How is your cousin doing now?

I hope all goes well with the Nplate.

Kind Regards

Vanessa

Please Log in or Create an account to join the conversation.

  • Angel85
  • Offline
  • I am 27 years old from Australia and I have T.A.R Syndrome. My email address is not showing on my profile for some reason so it is blossom_242@hotmail.com for anyone who wants to send me an email.
More
15 years 2 days ago #765 by Angel85
Replied by Angel85 on topic Re:From Roller Coaster to Big Dipper!!!
Yeah, my cousin is heaps better now, they still don't know why he was having so many seizures, but he hasn't had any since then so thats all good. Yeah, i'll try to make it on next tuesday night, it has just been a big couple of weeks with work. Thanks I start that on friday, so i'm hoping it all goes well and it keeps my counts up to a good level.

Please Log in or Create an account to join the conversation.

More
15 years 1 day ago #775 by julia
Replied by julia on topic Re:From Roller Coaster to Big Dipper!!!
Wow, its like Disneyland,Universal & Bush Gardens all rolled into one! What a ride!
Hope you feel better and more normal very soon.
Julia

Please Log in or Create an account to join the conversation.

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
15 years 1 day ago #779 by Sandi
Replied by Sandi on topic Re:From Roller Coaster to Big Dipper!!!
Vanessa:

I don't understand why the hemo wants to treat you for thrombocytosis. Your counts are not dangerously high yet - are you at risk for clots for some reason (other than the surgery)?

I hope you feel better soon!

Please Log in or Create an account to join the conversation.

More
15 years 1 day ago #781 by snowgoose
Replied by snowgoose on topic Re:From Roller Coaster to Big Dipper!!!
Julia, I like your sense of humour!!! :laugh: :laugh:

I know Disneyland and Universal Studios, but have not heard of Bush Gardens?? Are they in your part of the world??

How are you doing on your treatment?

Vanessa :laugh: :) :P

Please Log in or Create an account to join the conversation.

More
15 years 1 day ago #783 by snowgoose
Replied by snowgoose on topic Re:From Roller Coaster to Big Dipper!!!
Hi Sandi,

They are concerned about the high count, but haven't had a chance to talk to Haematologist in person yet. I think one factor in the decision to treat is probably because of the documented clotting issues associated with Eltrombopag/Promacta.

Have you broken out the Berry Panacotta yet? :)

Vanessa

The blood lady has just been, I will know todays result in a couple of hours,and the chemist has just delivered the asprin for the Thrombocytosis. I feel unwell with the infection,as antibiotics have not kicked in yet. A bit concerned as it could be MRSA as it would seem like it was picked up during surgery, and I have had it in the past, and it comes in handy, as I always get my own room when admitted :) !

I appreciate being able to rave here, as I have a lot of time on my hands,alone at the moment.

I thank God for this site, for Sandi and for all of you! :)

Please Log in or Create an account to join the conversation.

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
15 years 1 day ago #785 by Sandi
Replied by Sandi on topic Re:From Roller Coaster to Big Dipper!!!
Oh, just aspirin then....that's not too bad. I thought they were bringing out the big guns! Wow - you get all that delivery service - we don't have that here.

I certainly hope you don't have MRSA!

The candy is all gone...has been. It was great and thank you again!

Please Log in or Create an account to join the conversation.

More
15 years 1 day ago #786 by snowgoose
Replied by snowgoose on topic Re:From Roller Coaster to Big Dipper!!!
Just asprin, I had read that they can also choose to use cytotoxic drugs - I don't want any more of those, if I can help it :woohoo: !

Sandi, Have you tried Cadbury Creme Eggs!!! MMMMmmmmmmmmm!!!

Please Log in or Create an account to join the conversation.

More
15 years 1 day ago #787 by snowgoose
Replied by snowgoose on topic Re:From Roller Coaster to Big Dipper!!!
Hey Tamar, I am no longer fresh, but have attained Junior status!!! :laugh: Looks like 20 is the magic number!!

Please Log in or Create an account to join the conversation.

More
15 years 1 day ago #789 by snowgoose
Replied by snowgoose on topic Re:From Roller Coaster to Big Dipper!!!
Wait for it!!...........Drum roll.........Today's count is 897!!!!!!
:huh: :dry: :blush: :blink: :side: :S :woohoo: :ohmy: ;) :( :unsure:

Vanessa

Please Log in or Create an account to join the conversation.

  • Angel85
  • Offline
  • I am 27 years old from Australia and I have T.A.R Syndrome. My email address is not showing on my profile for some reason so it is blossom_242@hotmail.com for anyone who wants to send me an email.
More
15 years 1 day ago #790 by Angel85
Replied by Angel85 on topic Re:From Roller Coaster to Big Dipper!!!
Wow, they don't seem to be coming down at all, platelets have a mind of their own sometimes i think. Hope they come down a bit soon and hope u start feeling better soon!

Please Log in or Create an account to join the conversation.

More
15 years 22 hours ago #811 by julia
Replied by julia on topic Re:From Roller Coaster to Big Dipper!!!
Hi Vanessa, i wonder if they get your count down to under 450k they will be able to leave you alone with the needles etc? Do they think the infection is helping keep your count up too?
Bush Gardens is brilliant and in Tampa an hrs bus trip from Universal, I think they own Sea World too. We have been 3x on holiday but unfortunatley we live in the UK :unsure:
Im doing fine thanks on the Imuran, my last count was 275k on 50mg but my little old bones are suffering with the cold. Just got some fab thermals though :woohoo:
Take care in there hope they let you out soon
Julia

Please Log in or Create an account to join the conversation.

More
15 years 9 hours ago #823 by snowgoose
Replied by snowgoose on topic Re:From Roller Coaster to Big Dipper!!!
Today's count is........807, maybe this is the end of the hike, daily tests continue......

Vanessa ;) :) :huh: :P

Please Log in or Create an account to join the conversation.

  • Angel85
  • Offline
  • I am 27 years old from Australia and I have T.A.R Syndrome. My email address is not showing on my profile for some reason so it is blossom_242@hotmail.com for anyone who wants to send me an email.
More
15 years 9 hours ago #824 by Angel85
Replied by Angel85 on topic Re:From Roller Coaster to Big Dipper!!!
Yeah, hopefully they are on their way back down to a resonable level.

Please Log in or Create an account to join the conversation.

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
14 years 11 months ago #846 by Sandi
Replied by Sandi on topic Re:From Roller Coaster to Big Dipper!!!
Geez, Vanessa - what the heck? Highly unusual!

Please Log in or Create an account to join the conversation.

More
14 years 11 months ago #852 by snowgoose
Replied by snowgoose on topic Re:From Roller Coaster to Big Dipper!!!
Today's is up again from yesterday :( to 858!!!

The other thing that is happening over the course of the past week of daily tests, is that my Haemoglobin is dropping, on Monday it was 140 and today it is 118 - not sure what to make of that!!?? :huh:

Sandi, I don't do normal!!!. HIGHLY unusual, I like the play on words :laugh: !!I have spoken to my Haematologist and he has explained what he thinks is going on, when my brain has regained some power/RAM :P , I'll explain it to you!

Now for more important issues.............Sandi, have you tried a Cadbury Creme Egg??


Vanessa ;) :blink: :silly: :unsure: :ohmy:
:laugh:

Please Log in or Create an account to join the conversation.

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
14 years 11 months ago #853 by Sandi
Replied by Sandi on topic Re:From Roller Coaster to Big Dipper!!!
Vanessa:

Yes dear, when your brain is working, I'd like to hear that explanation!

I'm not too keen on the Cadbury eggs. I don't like the goo inside. You crack me up!

Please Log in or Create an account to join the conversation.

  • Angel85
  • Offline
  • I am 27 years old from Australia and I have T.A.R Syndrome. My email address is not showing on my profile for some reason so it is blossom_242@hotmail.com for anyone who wants to send me an email.
More
14 years 11 months ago #864 by Angel85
Replied by Angel85 on topic Re:From Roller Coaster to Big Dipper!!!
Wow, i can't believe they have gone up again, is there anything they are doing to try to get them down or just watching and waiting at the moment?

Please Log in or Create an account to join the conversation.

More
14 years 11 months ago #878 by snowgoose
Replied by snowgoose on topic Re:From Roller Coaster to Big Dipper!!!
Up again from yesterday, but only slightly, not the big jumps of 100 plus a day like last week.......867! ;)

Vanessa

Please Log in or Create an account to join the conversation.

More
14 years 11 months ago #879 by snowgoose
Replied by snowgoose on topic Re:From Roller Coaster to Big Dipper!!!
Hi Lauren, My Haematologist has prescribed asprin, it doesn't stop the production of platelets, but it does coat the platelets, and help to prevent clotting.

Has anyone else experienced a extreme increase in platelets after surgery? Anyone???!!!!

Vanessa ;) :silly: :blink: :blush:

Please Log in or Create an account to join the conversation.

More
14 years 11 months ago #880 by julia
Replied by julia on topic Re:From Roller Coaster to Big Dipper!!!
Hi Vanessa, im sure it was Lib who had counts way up like yours for a while after the same treatment, I think it lasted a couple of weeks before getting down to a normal count range. Im not sure if shes travelling the world now, that was her plan. So, think of all the places you would like to see! I know what you mean about cadburys creme eggs, have you tried a walnut whip? i throw away the walnut on the top though-its too healthy :ohmy:
Julia

Please Log in or Create an account to join the conversation.

More
14 years 11 months ago #882 by mendenmh
Replied by mendenmh on topic Re:From Roller Coaster to Big Dipper!!!
Often, they give a big dose of steroids with surgery, to reduce inflammation and speed healing. Did they do this? Could it have caused the huge jump?

Marcus

Please Log in or Create an account to join the conversation.