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  #26  
Old Fri Feb 28, 2014, 01:37 PM
Neil Cuadra Neil Cuadra is offline
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PrettyFunky,

One thing we learn when we're ill is who our real friends are. I suggest that you simply block email or other messages from people who are causing you grief, or send them to the trash bin unopened and unread. The people who are negatives in your life don't deserve your attention. Concentrate on the support you DO have and the people you CAN count on. Maybe that's only one person right now, but if you're open to new friendships then other positive people will come into your life.
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  #27  
Old Fri Feb 28, 2014, 03:42 PM
sbk007 sbk007 is offline
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Promacta can be used "off label". If it interests you talk to your Doc.
All the best to you hope you are feeling better. One thing I'll add is that now is the time to think about you and put yourself first.
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  #28  
Old Fri Feb 28, 2014, 04:19 PM
Sally C Sally C is offline
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Dear PrettyFunky,
My husband is a huge success story regarding Promacta. You would certainly be on the right track if he is any indication. Please feel free to e-mail me with any questions - shcalvert3@aol.com. I would like to help in any way I can.
Take care of yourself and know you have alot of people here who wish you well and are cheering for you.
Keep your chin up gal!
God Bless,
Sally
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  #29  
Old Sat Mar 1, 2014, 09:03 PM
PrettyFunky PrettyFunky is offline
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I just got the sweetest private message on here that has me in tears and reading everyone's successes has empowered me to really embrace all that has happened this year and get myself healthy in all ways.

I will definitely discuss Promacta with my doctor but I also need to schedule my ATG therapy. Now that I have a more stable living arrangement with an incredible Godsend of a friend I feel better than I have in so many months. In a way I feel like this is a second chance at life. I took so much for granted and wasted so much energy on negative, destructive things that weren't worth it in the end.

This might have been my wake up call. Even my mom today became belligerent on the phone with me that I was being a "Debbie Downer" (I honestly don't think I was, she is mad that she can't stay at a house I no longer own when she leaves rehab), and I put up the boundary that I wasn't going to talk to her if that's the way she wants to treat me.

I'm selling a car that is a negative and horrible reminder of a period of my life that was even worse than facing this illness.

I'm looking at ME and digging deep inside to remember that happiness I used to have three years ago before I made the worst decisions of my life.

This is forcing me to confront my life on every level and it may be painful and hard but I will come out stronger on the other side.
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  #30  
Old Sun Mar 2, 2014, 03:47 PM
Relentless Against SAA Relentless Against SAA is offline
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Pretty Funky,
Have you thought of contacting NIH about Promacta? NIH is doing several different Promacta clinical trails for patients with SAA. My understanding is that they are using Promacta with ATG and Cyclosporine for those that have not been treated yet. They are also offering Promacta trails for those who have refractory SAA. I have read that NIH is having excellent results with Promacta. A benefit of NIH prescribing Promacta is they promise to watch you very very closely so any negative effects are caught early. If the travel distance worries you- talk with them before deciding against. I believe they can help you with travel cost. Sally C has posted that NIH is a wonderful research facility- a place of healing. I believe we can all have the wonderful result her husband has had. Please let me know if you would like the phone number to NIH's Promacta Clinical Trail Nurse: Diane Madey

May the Lord bless you. May the Lord bless all with bone marrow failure.
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  #31  
Old Sun Mar 2, 2014, 09:38 PM
Kathy S Kathy S is offline
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Thumbs up

I think you have had time to really think things over and you will and can now move forward with your treatments. Don't let things that have happened in the past hold you from moving on to the future. You will need to hold on to a positive attitude to get you through this, but you will get through it.
Thoughts and prayers are with you.
Kathy
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Kathy,wife of 69 year old male with DX June 2013 with MDS= RAEB 2refractory with Extra Blast Very High Risk WBC 1.9-RBC 2.29-HGB 8.1-PLT 32-, as of Aug 2013:. BMB 12/4/13= WBC 5.57/RBC 4.86/HGB 15.5/HCT 42.8/RDW 49.6/PLT 188. 3% blast.BMB 4/11/14 WBC1.6,PLT12,RBC2.6,HGB9.2
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  #32  
Old Mon Mar 3, 2014, 12:16 PM
PrettyFunky PrettyFunky is offline
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Can you PM me the number to the NIH nurse? I have a great support right now with a wonderful friend who I reached out to and I know he will be there to help me through travel and treatment if the NIH is the best option. I have been reading so much on Promacta and the results seem so hopeful.

Thank you all for the support! I was so blindsided by this diagnosis and by the events that happened in my life, but I realize there's so much hope and so much support. It might not be in my family or people I thought loved me but new bridges are being built and I'm excited!
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  #33  
Old Mon Mar 3, 2014, 01:20 PM
Relentless Against SAA Relentless Against SAA is offline
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Prettyfunky,
I sent you a private message with the phone number. Diane is only in the office on Tuesdays and Fridays.
Please let me know if you didn't receive my private message. The last private message I attempted to send to someone did not make it. (I am sure do to my error)
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  #34  
Old Fri Mar 7, 2014, 01:47 PM
PrettyFunky PrettyFunky is offline
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Thank you so much. My ANC is too high to qualify for the study but I'm hoping my doctor can prescribe Promacta as part of my treatment? I don't know the status of it. I've heard it was fast tracked for approval by the FDA for SAA. I guess I'll have to discuss it with him.

I feel okay but I'm getting transfusions, so I guess I'm delaying treatment out if fear. My hematologist wants me to start ATG treatment... well last month. LOL. I can't keep researching and delaying it.
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  #35  
Old Fri Mar 7, 2014, 11:52 PM
Hopeful Hopeful is offline
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Hi PrettyFunky,

The more you delay treatment, the less likely you are to respond to it. So do not delay.

Even fast tracked, it will be awhile before Promacta is available for the treatment of SAA. I think I read 1-2 years somewhere… Also, Promacta is very expensive and the insurance companies make the doctors jump through many hoops before they prescribe it for ITP today. Even if you are able to get it outside of the clinical trial, the cost may be prohibitive without insurance.
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52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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  #36  
Old Sat Mar 8, 2014, 06:30 AM
Karenish Karenish is offline
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Pretty funky - I went to the dark place - in fact i suspect a good many of us do when we are first diagnosed. But you know, there are many reasons for you to come back to earth - you are alive, you have a battle on your hands, but you can beat this, you can change the course of your current pathway. This thing wants to win, you just have to take a deep breath and tell yourself that you have been through much and have survived thus far and this bloody horrible disease can go ~@~@## it self! You get angry at it, destroy the power of it that is trying to take hold. Start planning your future, write down your ideal partner, and set that as a goal, start planning what you are going to do different to what you have done in the past to make sure your future is better. I found "mindfulness" was a godsend through treatment, just being in the present moment, without judgement.
Look it up on youtube - you have a new family now, your AA family, we do know what you are going through, and we are always here for you to rant at - dont give up - join us in the army and lets kick the ass of AA - join us princess warrior we need you onboard xxxx
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  #37  
Old Sat Mar 8, 2014, 05:07 PM
dfantle dfantle is offline
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My Hematologist in Seattle was able to get my insurance to cover Romiplostin 2 years ago, to try & see if this helped my numbers. My clinics studies indicated it works the same as Promacta, though Dr Young let me know at the time this brand was not included in their Promacta study, so he was more comfortable with the Promacta.

Both Romiplostin & Promacta are approved for use in some blood disorders so obtaining approval may not be an issue. You can query the FDA site for more info on which ones-though I think Promacta is approved for PNH & Romiplostin for ITP (low platelets). In addition to low platelets, many AA patients have some PNH & even a low level could help to qualify you to receive this, as long as you qualify & your Hematologist includes one of the approved illnesses in his request

If you' interested in trying this, my suggestion is you ask your hematologist if they recommend Promacta for you, will let you try it, & if they are willing to work with your insurance to try & get approvals. Just make sure you let your Hematologist know you want the Promacta (& not Romiplostin).
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Dena
Age 54; DX Heavy Chain (AH) Amyloidosis 6/10; AutoSCT 3/11; Amyloidosis remission 6/11; DX SAA 7/11; Horse ATG 3/12; Mini MUD SCT 1/13; Recovered from SAA 5/13 & feeling great
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  #38  
Old Sun Mar 9, 2014, 10:00 PM
marmab marmab is offline
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promacta

I have profound thrombocytopenia, and am starting Promacta this week (prescribed by my hematologist) in the hopes that this will help -- nothing else has. My insurance is covering the cost, although I believe that the medical team did have to go to some lengths, but nothing extraordinary, to get it all worked out with my insurance company.
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Marmab, F65, SAA/hypo MDS dx 7/2011. Tried ATG/CsA, IvIG, Rituxan, prednisone, Promacta -- none of these helped. Transfusion dependent until MUD BMT 7/17/14. Prep. regimen of Campath, Fludarabine & Cytoxan. Doing great. 100% engraftment. No GVHD.
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  #39  
Old Mon Mar 10, 2014, 02:35 AM
PrettyFunky PrettyFunky is offline
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I'm writing a list of all this down to talk to my hematologist about and I'm getting a PICC line tomorrow which has me freaked out plus another transfusion. Busy day tomorrow. I'll be exhausted be the end of it I'm sure. Thank you all for the support!
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  #40  
Old Sat Mar 29, 2014, 04:04 PM
Karenish Karenish is offline
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I married a bloke with narcissistic personality disorder so I do know how you feel, luckily I divorced him just before I was diagnose, pretty convinced that it was the stress of everything and him which kick started this bloody disease. Anyway I finally met a man who has stood by me, who stayed with me even tho we could not have a sexual relationship for months and months for fear of bruising and infection. NOW i realise why I got AA - to make sure that i never spent another moment with a person who didn't love me for who I was, at my worst etc. etc. YOU can do this, with all your new virtual friends, we can pick you up by your socks and help you. But one day you will look back and you will see that you have become a stronger person, that you don't need anyone to help you live, but that you can have someone to share the journey with you. Keep us in the loop with your progress, you will have bad days, but then notice the good too. xxxx
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  #41  
Old Sat Jun 14, 2014, 10:26 AM
PrettyFunky PrettyFunky is offline
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Just an update: I had my treatment! So far I'm responding well but somedays I feel so much sicker from side-effects of the pill regimen than I did before. Mentally I'm also so much incredibly healthier! I met some wonderful people in this process, from here, from the hospitals and medical centers, from the Facebook groups, and from my personal life. Then I discarded, distanced, and left behind all those not worth having around and material items not worth keeping.

I hit some very low points. The man I referred to often in my older posts is now just someone I used to know. After three years it took nearly my life (literally) in order for me to realize that! What a wake up call that was! And I'm happily involved with someone who has been there for me through this entire thing!

I can't wait to turn 30 this year! What a blessing, what a hope, and what a dream!
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