Splenectomy or Not

This is what i have come up with. Keep taking the toxic medications and hope to find one that keeps my counts up. Or on the other have the surgery take out the spleen and hope I am on the good side of the 50/50 chance it will work. If it work it could last months or even up to 10 years. Then at that point I can start up the toxic medication again. Right now I am on the schedule for chemo (Rituxan) on 9/18. So I do have time to think about it, but I have to think I will be out of work for 6-8 weeks and that does not include the week in the hospital. I will have to check into temporary disability which I know nothing about. Set up someone to check in and or stay with me for at least a week afterwards while Chan is at work. I will need to get some vaccinations (2) and least two weeks prior to the surgery. And will need them every two to three years for the rest of my life but that would be better than staying on the toxic medications. I would rather wait until the last minute of the charity program it ends 1/24/14 (which is when my vacation time starts back up) so I can use some vacation time at work.

I just don't know what to do and need some input on what to do!!!!!!!

So how long was everyone out of work?
How long in the hospital?
Does anyone know about temporary disability in Georgia?
When I come home do I need to have someone check on me or stay with me while my husband is at work?

hi Amber. I was only in the hospital for one night after my surgery. Steven didn't work weekends at that time, so he was home with me, but come Monday he was back at work. I just lazed around the house for the fist week. I felt so bad for Steven, he had to work, come home, cook supper, clean up and whatever else had to be done. If I so much as even suggested helping, he'd have a fit. By the second week, I was doing a bit more. When I did laundry, he would put it in the dryer for me, then I would fold and put it away.

I think I was already on long term disability, so didn't have to worry about that.

Unfortunately, it didn't work for me.

Do you have Unemployment Insurance in the States? Could you apply for that if you decide to have the splenectomy?

I can apply for temporary disability after being out of work after 7 days. And it pays 60% of my weekly income. Just trying to get my ducks in order if the surgery is the way to go.

Well, if you are thinking about surgery, you should put off Rituxan. Vaccines should not be given within 6 months of Rituxan as they will not be effective.

Most people who have had the lap method were back to work after a week or two. Recovery isn't as long as it is with the open surgery.

That is what I am trying to decide, to keep getting the toxic medications. Or take a chance to see if the surgery will work for months or years. Then get back on the toxic medications. It would be nice to have a break from the medication or do I stay on the medications. Either way it is a gamble.

Hi Amber

I had my splenectomy in 2000, before the laparoscopic method was used often. I was in the hospital for 5 days. I felt better the following week and was up and around in the house. I never needed anyone to stay with me. I was back to normal by 3-4 weeks after the surgery. I didn't need disability because I work in a school and had it done in the summer.

It was not that bad. I keep up with vaccinations for pneumonia, meningitis and have a flu shot every year. I don't get sick anymore than anyone else does.

I agree with Sandi, if you are thinking about having a splenectomy within the next few months you should put off rituxan.

Really good point by Sandi, I also agree - if you are going for the surgery, do not use the Rituxan. Those vaccinations are soimportant with splenectomy.

Amber, why not consider not treating for a while? Or do you have serious bleed issues?
Erica

Yes I agree, I just put the wheels in motion for the Rituxan. Just needed to talk to family and family doctor get some close peoples opinion. My family doctor knows a surgeon at the hospital where I have the charity fund. So I am going to call my specialist on Monday and leave a message for the nurse about the doctor I want to do the surgery and get a consultation setup, and of course let them know I'm not doing the Rituxan. I have to go into the office on Wednesday for CBC and I am sure they will give me the vaccinations then. My plan is to have the surgery in January 2014 but will see what the surgeon says. He may want to do it earlier, we will just have to wait and see.

Amber,

With all the treatments you have tried - have you given thought to giving yourself a break and see where your platelets stabilize at. Some of the treatments you have had can take week's/months till they finally settle in. I am sure you could use a break from the side effects as well. Many of us here live with low counts and just treat symptoms - not counts.

I had a Hemo that kept wanting my spleen out after 4 years of hearing it from her - I found a new Hemo and boy am I happy!!

This should help with the anxiety www.itpsupport.org.uk/american/%209.%20Can%20I%20Die%20from%20ITP.pdf a great article that should be given to all IPTers at first diagnosis!!!

CindyAnn wrote: Amber,

With all the treatments you have tried - have you given thought to giving yourself a break and see where your platelets stabilize at. Some of the treatments you have had can take week's/months till they finally settle in. I am sure you could use a break from the side effects as well. Many of us here live with low counts and just treat symptoms - not counts.

I had a Hemo that kept wanting my spleen out after 4 years of hearing it from her - I found a new Hemo and boy am I happy!!

This should help with the anxiety www.itpsupport.org.uk/american/%209.%20Can%20I%20Die%20from%20ITP.pdf a great article that should be given to all IPTers at first diagnosis!!!

What do you mean just treat the symptoms?

Treating the symptoms means treating if you have bleeding symptoms, especially 'wet' like bleeding in urine or bowels, eyes, mouth, not 'dry' symptoms like bruises. Not treating at a certain count but treating only if symptoms are present.

If your counts are below 10 then you might want to treat regardless of symptoms but above that many live with low counts if they have no bleeding symptoms.
Erica

I really don't want major surgery! What kind of treatments do most people do? the normal one?

There are more cons than pros with this surgery and I'm going with rixutan with dex this time around.

Well I crashed on Thursdays and ended up in the hospital at 1k. After IVIG's and platelets got out on Saturday with counts at 29& 30. Had first round of rituxan on Wednesday going back for second round on 9/18 and re check of counts.

Had a nice talk with doctor yesterday. I am in the small % that taking my spleen out wouldn't do me any good. Since most of the treatments and not working he said if I take the spleen out I would be in the same boat as I am now. Spleen removal may give me days or months then I would be doing the same thing that I am doing now, trying different treatments and old ones. Count yesterday 8K today 7K, Rituxan, Steroids and starting dex 4mg once daily starting tomorrow until I see him. I am hoping that it will be next week so I don't have to miss anymore work.

I am in the small % that taking my spleen out wouldn't do me any good.

"small %" ?? ........ There sure are a lot of us in that "small %"......
Depending on which source one uses, most put the splenectomy failure figure (for ITP) between 40% and 60%.
So basically, for about half of ITP patients, a splenectomy would not do us any good. That is not exactly a "small %".

.

Doctor talked about if medications haven't worked or just stop working, the surgery wouldn't work. Also told him that I'm fine if I can get to around 20-30k , today 7k. Just glad we are on the same page on surgery but did get vaccinations just in case of an emergency.

As of today
i had ritux in aug... it did NOTHING for me NOTHING

60mg of pred cant even keep me above 2k anymore

i have had itp for 14 years been on and off roids. ivig, whinrow, was in a dare i call it remission where my counts stayed at 70-90k the past 2.5 year i dont have a normal.. been on pred this last round is 4 mths now

IVIG gives me highest #s and i free fall back in to the 20s after ivig even on pred
1st IVIG last 8 mths
2nd-2mths
3-2weeks
4th-3weeks
tomorrow will be 5th

ivig tomorrow to boost #s and surgey friday


i now learn my shots are void but i got them will repeat them in 6 months likely.
I am honestly scared shit-less even this might not work everything else has slowly failed me to this point.
but fingers crossed.

Hi sissykidd,

I had a splenectomy in 2003 and have been in remission since. Like you pred did nothing for me...

Fingers crossed that your surgery will be a success

Hi To All,

Did anyone have tried partial splenic embolism in lieu of splenectomy? below link showed good result..

www.ncbi.nlm.nih.gov/pubmed/8010197?log$=activity

Our Hema recommended my 12yr son to have this instead of open surgery splenectomy..since we tried all medications from steriods to rituximab to herbal..all failed to raise platelet count..

Hope to hear from you guyz.

Thank you and God Bless!

WOW - that is a pretty good response rate. I wonder in they are considering it in America?

Well, before you go and get too excited....that study was done in 1994. 19 years ago. It's been discussed here before. I would think that if it were equal to or more successful than a regular splenectomy, it would be a common, viable ITP method of treatment. It's not.

we are pushing through with the partial splenic embolism,,i think 80% cutting the blood flow to the spleen..i hope and pray this works for my son..i dont want him go back to toxic rituximab again..

Good luck. Please let us know how it turns out. I don't think I've ever seen anyone here actually have that done.

My 12yr old son successfully undergone total splenic embolism, praise God it was successful...his platelet immediately rose from 2K to 48K in 24hrs, 78k in after 3 days and now 128k after 7 days...it was seen that his spleen is overactive, they called hypersplenism...although his hospital stay was extended by 4 days due to pneumonia that developed after 2 days...ultrasound showed that the embolism was at 70% after 3 days, no abscesses developed..and was discharged from the hospital last 13 February 2014..and normal active boy again..

he bravely was endured pain after 24hrs of the operations, i saw him in deep pain...pain killers was given round the clock to relieve the pain...

It is the first time it was done here in the Philippines for an ITP patient...it was done several times for trauma patients only..The Doctors requested permission to post the Hospital Journal the success of this procedure..I hope to get the copy of the medical journal to share to all here..

Thanks for the update. I'm glad he is doing well. Please keep us posted on how his counts respond over time.

Hi Evciar - Great news the procedure went well!

The earlier link was from 1994. I found a study, published 2011, for a similar procedure called
'Total embolization of the main splenic artery as a supplemental treatment modality for hypersplenism',
but I don't think it is a different procedure. It looked extremely promising.
All fifteen patients, with hypersplenism due to cirrhosis, had lasting platelet increases from the procedure:

The WBC and PLT counts were significantly higher and the residual splenic volume was significantly lower 1 and 6 mo, and 1, 2, 3 years after the procedure.
www.ncbi.nlm.nih.gov/pmc/articles/PMC3129510/

Is anyone familiar with this procedure, and whether it has been tried in the USA?

Thanks Sandi,

Yes will do!