Failed treatments

Thank you so much Cindy. I will not be bullied into any treatment I do not agree with. Her attitude was shocking to say the least. It happens that I work in the medical field and am blessed to know many physicians who have been wonderful and so helpful since I was diagnosed over a year ago. To be honest her approach was not only hurtful and inappropriate, it was unethical, but I am grateful that it happened. Had we not had that exchange I likely would just continue chasing a platelet count. This was the catalyst for me to go down a new road regarding my treatment. Where this new path takes me is yet to be seen, but I do feel positive about the decision to seek a second opinion. Thank you for your positive words and support. I will post an update after my appointment on Thursday. Have a great day!

Rose,

I had a similar experience in March. My hematologist called to set up an appointment with a surgeon. I was very frustrated and upset. I had been on here and did research and knew I did not want a splenectomy. I ended up seeing a specialist at Cleveland clinic on april 15th.I told him what I knew about the research saying wait at least a year before considering it and he said that's great that you are up on research. Well he put me on high dose nplate( the old hema didn't think it worked but was afraid to give me a higher dose or give it time). He now consults weekly with my reg doctor. well it is now July 8th and have had good counts all but one week ( doctor said my counts were high so skipped a week and was down to 4). I can say I feel like myself again and am beginning to feel like I can breathe at least for a little while.

I think you need to do some research and find someone who is an itp expert ( there are only 3 in Ohio) it will change your life. That person can consult with a regular hematologist weekly if he or she is too far away to see on a regular basis. What I have found out from personal experience and on here is most hematologist's are oncologists and that is what they do 95% of the time, so they really don't have a clue about itp.

Good luck with a new doctor! There are other options. Bring in research if needed! Hopefully he or she will listen

Rose:

I think you are on the right track and hopefully, will find someone who is more accommodating. You need someone who will work with you; I have my fingers crossed that this new person will be the one. Good luck and keep the hope! You can do it!

I was diagnosed with itp 38 mouths ago. I ate Prednisone twice .Fortunitly,I met with a good doctor,she helped me during the deduction for the first time,I did the second time.Accoding to me ,I had to say,the best doctor or medicine are still ourselves.i gaved up much bad habit,for example :read novel or watch TV all day and all night..eat spicy food, and so on .I didn’t take care of myself for about half a year.During the first time I changed,I closed book and TV,I had good sleep,I had good food,and I got well rapidly.And I forgot that I had Itp.I began too much reading again,I couldn’t control my emotion at small things ,and I became stupid. I had blood in my throat and I didn’t mind.Thank god ,he gave me another chance.But this time itp is not that easily be away.I ate Prednisone everyday and calcuate the number I ate and the number I would eat. Now my counts is 200,and I quit Prednisone for a year . I am now lead a very regular life ,and I find my life spirit..After all,our lives are not made by iron.IT’S made by blood and meat.IT need fresh air and water and food,it need to smell the flower .it need proper sports.Everybody is not saint,you wrong ,you change,you get well.that’s easy to understand,but hard to do.Sometimes we just cann’t control ourselves.

I have had itp for 14 years (1999)

from 2004-2009 i was spontaneous remission count stable at 70-90k

got preg was still okay

since 2011 i have been in the 20s or lower

60mg of pred has failed
ritux fail
ivig- short lived counts

surgery set for friday and i wont sugar coat i am scared to death it might fail

I've had ITP for 10 months.

Prednisolone works at low doses (but only whilst I'm on the contraceptive pill - no response to even very high doses on its own)
Ivig works for about 3 weeks
Mycophenolate (cellcept) seemed to work for me for a couple of weeks but failing now.

I have an indium scan booked for 25th November and the week following it to see where my platelets are being destroyed. If the results suggest a high percentage of platelets are being sequestered in the spleen, I may opt for a splenectomy. I think this is only an option in Europe at the moment though.

Rose - I found an ITP specialist & he has been fab - I really hope your new haemo works out for you.

Sissykidd - good luck for Friday! I will keep you in my thoughts and have everything crossed for you. I really hope you get a positive outcome x

Katsim,

I was also diagnosed 10 months ago. I'm very curious about your scan. Please keep us updated. I am American and do not have that as an option yet. However, I was informed that it has a long way to go before becoming prefect. I'm still very curious.

Vdeutsch, the indium scan will never become 'perfect' as it is not that sort of test. It does what it does. It told me that a splenectomy would have less than 16% chance of success.

Vdeutsch - like Ann says you get a percentage result from the scan letting you know how successful or not a splenectomy may be. I would doubt very much than anyone ever gets a result suggesting 100% success, and even if they did, another part of the body could possibly take over the production in the future. I've written a different thread about it on this discussion board with as much info as possible

Exactly. The Indium doesn't really predict success. It can predict failure rates though.

An update after getting a second opinion. I spoke with the Hematologist I chose and although it was a postiive experience, he agreed with my original doctor regarding splenectomy. I decided to go ahead and follow through with a consultation with the surgeon as I am a big believer in gathering as much information as possible before making decisions. I must say the surgeon was wonderful and assured me that my reservations were well founded, as having a splenectomy in no way guarantees I will go into remission. He did tell me that even though my Predinsone experience was like a living hell, the fact that it was successful in keeping my plateles up gives me a higher percentage of the possibility of remission post Splenectomy. He told me to take my time in deciding about the surgery as it is certainly up to me. I am now back to square one with my treatment. Blood draw weekly, IVIG about every 3 weeks, I did not change Hematologists as there did not seem to be any reason to do so. I don't have regular appointments with her as she reviews my labs each week, when the count drops she orders IVIG. It seems we are at an impass with her wanting me to have surgery, and me still undecided. I have decided to wait until the 2 year anniversary of my original diagnosis, April of 2012 before making the big Splenectomy decision. So there it is fellow ITP peeps, we are all in the same boat...decisions, decisions..and more. Hope all is well with everyone who is in this with me. Happy Thursday!

Happy Thursday!

Making decisions is hard. I walk with a friend and each corner one of us has to decide whether to go straight or turn. I am always asking her to make the decisions and she is always putting right back on me.

The good news is the surgeon you saw wasn't pushy and seems to be understanding. Your doing what you should learning as much as you can so you can make a proper decision. Remember what ever you decide will be right for you!



Sending you thoughts and prayers to help you make this decision!

Hello Sandi, a little follow up regarding my ongoing treatment for ITP. I am almost at the 2 year anniversary of diagnosis and still receiving IVIG about every 3 weeks, so that has not changed. I sought a second opinion and he convinced me to at least speak with a surgeon, which I did last Fall. The surgeon was great and he basically told me it is up to me (duh). He did tell me that I had a higher percentage of the possibility of success because I responded to Prednisone, although I am still recovering from the hell that crap put my body through. My Hematologist and I do not see eye to eye at all. She insists I have the Splenectomy...period. In fact she called me tonight as I had to have infusion yesterday and she wanted to know if I had made an appointment to have my Spleen removed. We really got into a heated arguement as I told her it is my decision, life, body and I would let her know when I make it. She is arrogant and very, very rude to say the least. I am a Kaiser patient and have few choices for Hematologists, unless I want to drive a million miles to another facility for treatment. I may decide to have my Spleen out, but will stick to my guns regarding when. Have you ever heard of a doctor being like this? I certainly have no problem expressing myself, she found that out tonight when she called me. I am a bit amazed especially since I work in the medical field and she knows this. In fact I work in Hem/Onc, which may be her problem with me. Not sure. At this point I still have my spleen and will continue the IVIG infusions until I decide the next step. Thanks for your support and Happy New Year to all.

Rose:

Nice to hear from you.

A response to Prednisone does not predict splenectomy success. That fact was disproven a while ago.

I've never had a doctor like that, but I know others have. It certainly is your decision whether or not to have your spleen removed. Have you looked into N-Plate or Promacta? If not, your doctor should have probably suggested those instead of arguing with you. It's her job to present options, not force you into any of them.

Hi Sandi, I have read the same about Prednisone success and Splenectomy success in ITP patients. N-Plate is what started the conversation with my Hem doc in the first place. I emailed her and asked her if she would consider my trying this. She absolutely refuses to try anything until I have my Spleen removed. She had already told me this, but I gave it another shot and that is what set her off, I think. She is arrogant to say the least. I may decide to have my Spleen removed, but that will be on my terms and when I am ready. I am sort of stuck because this is Kaiser and they tend to not color outside of the lines. For now I am going to continue with IVIG, at least until my body is stronger and I pass the 2 year mark of my diagnosis in April.Thank you so much for your response and input. I always feel kinship on this site as so many have gone through this journey. I am not backing down either, so perhaps she realizes we are at an impass. Rose

That's too bad. It's a shame that insurance dictates so much. I get it, but it's still a shame.

The funny thing is that many articles are saying that with the addition of the TPO's as treatment options, many patients are able to avoid splenectomy since it's becoming less popular with both doctors and patients. Apparently, not all of them.

Hi Rose,

I came down with I.T.P., April 2010, after a shingles vaccine. I had 15 IVIG treatments, 4 retuxin, 4 1/2 months prednisone, etc. Nothing worked for very long.
I had an appointment at Mayo Clinic and was told, Do "NOT have the spleen removed. A large percentage of the time, removal of the spleen doesn't help with ITP.
I stopped taking IVIG as they quit working for me after fifteen times. The only treatment I have is B12 injections every 2 weeks. It seems to give me energy.
During the first 2 years of ITP, I was obsessed about the platelet count. Anymore, I don't think much about it. They are always below 20k., but I feel fine.
I wish you the best in whatever decision you make.