My Counts from the Start.. my roller coaster

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 family doctor
11/01/12 99,000 Roth family doctor
01/10/13 77,000 Roth family doctor
02/28/13 83,000 Roth family doctor
05/16/13 32,000 Roth family doctor
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

Did have my four Rituxan on 10/9/13 left that out.

are they talking about taking out your spleen?

Yes but want to try everything first, since some of the treatments you can't do after you spleen is out. Also do like the chances of it working 50/50 and that is good if your gambling.

It looks like treatments worked at the beginning but nothing is working now. I'm so sorry!

It seems like treatments stopped working once you started getting daily platelet transfusions. Weird.

It does look like that! Good point. I was also wondering if the immunizations you had a while back in case of splenectomy might be playing a role in the current low counts? The measles mumps rubella in particular can be associated with thrombocytopenia, I am not sure if this is the case when you already have it but other people on this board seem to say their counts have dropped with the flu shot so perhaps? Any thought of that from the hemo?

openhanded wrote: It seems like treatments stopped working once you started getting daily platelet transfusions. Weird.

Not so weird. Platelet transfusions can cause Post Transfusion Purpura. Keep getting transfusions, counts do not rise, endless cycle. That might not be the problem, but I'd definitely want to know for sure if it were me.

PTP is a rare delayed transfusion reaction where a patient develops dramatic, sudden and self-limiting thrombocytopenia (platelet counts <10 x 109/L in 80% of cases), typically 7 to 10 days after a blood transfusion.

www.transfusion.com.au/?q=node/58

Vacc's done 9/18, forgot to add that.

31k today but my period started back up only got one day break saw the doctor today and he was concerned about it. I put a question under the female section also.....

Wow what a list amber! Your body has been through so much recently. I agree with others that the platelet transfusions seem to coincide with failing treatments. It's really hard to say no sometimes though isn't it? Did you discuss that pattern with your haematologist? If I remember rightly you had an appointment today?

I really, really hope you find something that works for you soon.

katsim

Yes we talked about the platelets and for now on it is up to me if I get them. He said under 5k I should but if no symptoms I don't have too. So I am getting counts in am to see if I crashed or not but if I feel good not going to get platelets. But on the other hand if I am still bleed from the long period I may since it does normally help stop it.

Glad to hear you're being handed some of the control over the decision about transfusions. I always felt better when I was more in control.... But then I am a self-confessed control freak, so maybe that's just me

Good luck hun & I hope that rituxan kicks in fast!

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

I would be curious to know what happened between 07/01/13 and 07/08/13 your counts dropped on the first date but bounced back up on the second date?

It also looks like N-plate seemed to work your counts were above 20 as much as that isn't the best they did seem to be stablizing.

It does seem to appear that once you started mixing treatments your counts seemed to drop. Especially after you started platelet infusions.

I hope you find something soon.

I would still be on n-plate if it wasn't for the horrible headache.

Sometimes the side effects are not worth what the drug does for you! Hope things settle soon!