Platelets continue to fall (47)and what are my options

Doctor's office called last night and said that the platelets had fallen again this week. They are currently at 47 but all other counts and levels are okay. He has warned me that if they fall any next week the treatment has to be stopped. Period. He also told me that he wanted me to stay down all weekend and exert no energy and stay out of potential accident risk situations. I will take shots this weekend but if platelets don't show upward movement treatments stop until they (platelets) recover to safe levels. My big question is what good does it do to stop and start treatment. He said it could take 3 to 5 weeks for platelets to hit levels that were acceptable. At that point he would restart my treatment and finish the 20 remaining shots off. That break into the gap of treatment can't be realistic can it? Worried on this end. I know I didn't explain this very well either. Dale

[NYgirl]

I don't know anything about this but will start googling and researching in a minute and see what I can find. I too remember this happening to other people and them being ok.

God this disease pisses me off so much = why can't we just have enough already having to DO treatment, the sides are just so not fair.

One of us will find a viable avenue and then you will present it to the doctor like you did the research (so you don't have to do the "my friend on the internet forum said..." routine. If you do that he'll just put you on a heavy psych mediciation!

So we need med treatment to raise the platelets. I don't know why they can't give you a cancer fix...except even though we DO chemo just like them...it's not treated the same.

[Mister beagle bailey]

I don't know why they don't use the one for cancer patients too.  Procrit was and still is used for chemo patients and those on other treatments like me and others on HCV tx.  I just don't get it.

BEAGLE

[can-do-man]

Good luck guy, Seems goof had this problem. And seems to know alot about it. If you can catch him see what he has to say. Best going forward

[lilmoma]

I too wish you good luck with this, I just dont know a thing about it, to beable to help.
But it just seems there has to be an answer out there, my gosh, docs cant just take people off tx as a fix, that would negate all you have already invested.
Keep us up to date, I know I dont always post, but I am here to at least give emotional support,...I know that prolly seems like not alot right now.
lilmoma

[Mister beagle bailey]

I'm so sorry, what about the recue drugs?  Weren't they started?  I remember back when you were about to start tx talking about the recue drugs.

BEAGLE

[FlGuy]

Over the past 20-some weeks and cbc's have you ever seen it go up? In the past we have discusses Neumega, which is a drug to enhance platelets. But the applicability of it with hvc seems not to be indicated - you might check with your doc. I've read that the 'real' danger point is about 30. Has the doc picked a number at which he would recommend stopping?  Platelets bounce around so they might go up next time.  Other than rest and staying away from sharp objects did he have any suggestions (diet, supplement) that could enhance or anthing to avoid?

[Dale_Ray]

Hey Beagle: I seems that they have no rescue drugs for platelets that he is willing to use. I've heard of platelet transfusions in cancer patients but other than that I am not aware of other things you can do to increase your platelets. I read the Pegasys site for this condition and it is a problem for some. I don't know what to do with this one. Hope and pray that over the weekend they move up is about it. How are you feeling today. Two more for you after tonight -right? Dale

[Mister beagle bailey]

Dale I have 2 left after Sunday, buddy.  We need some help here for you I remember others having this problem and they did take something.  As you know with me it's the HGB.

BEAGLE

[Dale_Ray]

I've asked him about the Neumega and he had concerns about its use in this case and would not prescribe it. The first time the platelets dipped about 6 weeks ago they recoverd back to 70 the following week. This time they continued falling. I wonder if a reduction in dosage wouldn't be better than stopping and just keep the flow going so to speak. This stuff certainly gets complicated and every answer seems to lead to another question. Dale

[Alady1620]

It's going to be ok!  No matter what happens, you are going to be fine.

I remember last time when your platelets dropped and you thought you were going to have to discontinue treatment.  They went back up.  It is a roller coaster ride but I will pray for the same results for you this time.  No, I will pray they go up and stay up for the next 20 weeks.  

[NYgirl]

These links seem to have medications or cures for low platelets. I will keep looking but maybe we can ferret something out that he can use and then figure out how to present it to a doctor so that he will listen?

ITPInfo.co.ukAnti-D may raise the platelet level for between one and three months after ... Each treatment may raise platelet levels for between three and four weeks. ...
www.itpinfo.co.uk/content/patients/treating.html

(OK I know you aren't pg Dale but...it SAYS raise the platelet levels LOL)

The Incredible Birth Stories PageThe next 3 weeks were spent taking prednisone which is an oral steroid used for many medicinal uses, one of which is to raise platelet levels. ...
www.allthingspregnant.com/birthstories18.html - 10k


Platelet Transfusions
Cancer patients may require platelet transfusions if their bone marrow is not making enough platelets....
When platelet counts drop below a certain level (often 20,000/mm3), dangerous bleeding may occur. Doctors may think about giving a platelet transfusion when the platelet count drops to this level, or even at higher levels if a patient may be at risk of bleeding because of surgery.

If there are no signs of bleeding, a platelet transfusion may not be necessary even if the platelet count is low.

Currently there is one drug, known as interleukin-11 (oprelvekin, Neumega), that doctors can give to help raise platelet counts without a transfusion, but it does not work right away and is not widely used at this time.


thrombocytopenia: Definition and Much More From Answers.comIf these methods fail, surgical removal of the spleen (splenectomy) can help to raise the platelet level since the spleen is no longer there to capture the ...
www.answers.com/topic/thrombocytopenia -  




Should keep you busy for a few minutes.  Anything sound possible? I don't know why we can't see if the insurance company would PAY for the platelet transfusion...you know I tried to donate platelets once...it's a gross process but I was going to do it but they were going to charge me $50 and at the time as a new single mom I didn't have the money. I thought how stupid you should be PAYING me...I'm just trying to give them to you for free!

Too bad they didn't let me = we would have found my hep then.

[NYgirl]

I just read in here that the real danger point is 20. You are still pretty far from there - but let's see if we can find some solution to raise these dumb things.

I'd be eating beets by the boat load = don't nkow if it really works but then I tend to take everything Kalio says as pretty much gospel.

[NYgirl]

Everyone knows how I feel about Chinese herbs but

Diagnose-Me: Condition: A Low Platelet CountIn China, primary ITP is the main subject of reports suggesting that Chinese herbs - but not acupuncture - will raise the platelet levels in patients with ...
www.diagnose-me.com/cond/C271923.html - 33k


BDJ | General medicine and surgery for dental practitioners Part 9 ...It is not only prescribed medication that may interfere with haemostasis; ... Replacement therapy is required if the platelet level is less than 50

[woodbeegood]

have they checked your clotting time yet? my platelets fell into upper 50's/lower 60's while on tx-my dr had me doing 1/2 shots while they were low-or so he thought:)they bounced around but never went critical-some say 20 some 30 is the critical number. if your dr won't allow dose reduction or rescue drugs can you get a referral to an oncologist? that was an option my GI & I discussed also-since he wasn't comfortable with any of the rescue drugs & I wasn't comfortable with dose reductions-fortunately that was never necessary for me-I hovered right on the edge

[NYgirl]

I have to admit...I was just researching on Dr. Jacobsen and well after seeing how REALLY reknown he is and how at the forefront of research and treatment - I have to make myself a deal and go to him for second opinion and then do what HE SAYS.

I mean if there is going to be an educated opinion who is not biased...well it looks like this is the guy to ask.

Of course I think you are 100% right - as long as I sign UP for the 72 I could always quit at the 60 (I didn't even THINK of that...mostly because I am so anal about this disease that something abstract never occurred to me LOL)

I guess I should start planning for 72 in my head. Urgh. Well I always thought Cuteus was one of the bravest souls I ever met...now I'll have to convince myself that I too can do it ;)

[friole]

So sorry to hear about the low platelets.  I can't remember - did you have low platetlets prior to treatment?  Digging in the archives I found this informative post by southernboy:

southernboy
10/19/2004
"Steve here, I don't post much but just happened to see your question. My understanding is that low platelets are attributed to two conditions. The first, which is common to people with significant liver damage, is a backup and destruction of platelets in the spleen. The second is suppression of the bone marrow where platelets are formed. Vioxx was being used for the first situation because it is an anti-inflammatory, the theory being that if the inflamation (inflammation) in the liver can be controlled, the spleen can more easily dump into the liver thus reducing the backup. Interferon acts as a bone marrow suppresant which is why we have so many problems with blood counts, including platelets. A medication called Neumega will stimulate the bone marrow to produce platelets, similar to the way Procrit works for red cells and Neupogen for white cells. However, Neumega has limited effectiveness and some severe side effects, it is not often used. A platelet infusion will not work if the problem is related to backup in the spleen. The platelets just back up and are removed from the system very quickly, 6-10 hours. If the problem is due to bone marrow suppression, then the infusion might be an alternative."

I was looking for the allowable low for platelets on tx, but couldn't find it.  Looks like nygirl did -- she says it is 20. And what is the deal with the beets - just cause they are red????

[friole]

Good - you are going to seek another opinion.  I think that is great.  Hang in there, girl.  We just need to take one day at a time.  Yesterday I was elated because my doc said I could extend 8-12 weeks.  Today I am drepressed.  Go figure.  Just one day at a time.  Can't wait to find out what fishdoc finds out today at her consult.
kath

[mikesimon]

As FLGuy mentioned different doctors have different thresholds. My platelets were in the mid 20s and not a word was said about them. I think that clotting time is a more significant indicator than just platelet count alone in determining whether continuing TX is too risky. I don't know what you can do if your doctor is set against continuing if your platelets drop lower. At least find out what his threshold is. There have been many people here who continued with a count in the 30s. Good luck Dale. Mike

[NYgirl]

after seeing how really knowledgable this guy is I can't NOT go and listen to his advice.  For all we think we know in here (and face it we do "know it all" LOL - at least this guy really DOES and he would be able to look at the case clinically...not like I do from the heart).

I wonder if I should get my Dr. to make the call to get me in there since he's so famous - my doc is the one who TOLD me to call Ira Jacobssen and get the second opinion there. Being a 1A and B...he knows my chances are slim and has no ill feelings whatsoever about me getting more opinion from a better HEP doc you know?

[Mister beagle bailey]

I wish you all the luck, and will pray for you. Please keep us posted when you get that call.

God Bless YOU,

BEAGLE

[Mister beagle bailey]

I do #22 Sunday and then have 2 more left but doing the riba 7 days after my last shot.
Hope you have a sxs free week end. NYgirl said she was going to fix that problem this week end.

BEAGLE

[Mister beagle bailey]

Man, I don't know what your going through.  But will pray for your speedy recovery.  Please keep me up dated.

BEAGLE

[FlGuy]

Have you gotten your results yet? If so, how do they look?

[mikesimon]

They were up a little more. Transplant is calling me this morning and will hopefully provide me with some direction. Thanks for asking. Mike

[can-do-man]

Whats up a little more? Never mind i see you mean your numbers. Either way, Don't matter whats up as long as it is some good news. Best to you friend

[cuteus]

wasn't there a study in the AASLD conference about Procrit also raising platelets? maybe a web search on both terms together will bring out the study?

[jmjm530]

Thanks for the update. Sounds like you're in really good hands. All the best!

-- Jim

[GoofyDad]

Mike, Thanks for the update. My thoughts are also with you. Wow - a 24 hour urine test, huh? Be sure to lock the door, I'm sure people wil be banging to get in. Hopefilly they'll provide an oversized cup.

Dale, It's unnerving to see the platelets slide, isn't it? As I mentioned, mine would dip to around 40, them start back the other way. In a negotiation with me about low HGB, my Doc allowed that much of what they do carries legal liability because they push envelopes past published guidelines. So it's understandable that your doc might have a more conservative threshold.

When I stopped the INF at end of treatment, my platelets responded pretty quickly. Maybe your doc will agree to a half dose of INF until things turn the corner. I wouldn't be at all surprised to see it turn in a week.

BTW, saw the post about vioxx. I chased that down too. You can't get vioxx these days - it was pulled by the pharm.

Good luck. Stay positive. I feel it's going to work out.

[amommy]

Thanks for the update.  Hang in there.  You have a lot of support here, so come around when you need it! All the best to you as you get some answers.

[friole]

I am scared for you, friend but from all the things you have related you have a top-notch transplant doctor.  But I am sure you are going to have an anxious week.  I will be sending good vibes your way all week (they have been cooked to 102 degrees in the hot W Texas sun, tho, so don't know that you really want them).
kathy

[Dale_Ray]

Hey Goof:
Been waiting on your input. I won the last battle with the doctor with your input. I think the doctor is not a gambler and stays with standard protocol on medications and treatments. He is already letting me run under the published limit and he told me this weekend he was going to try to pray them back up. He's a good man. I appreciate all of your input. I figure if I have made 28 weeks and we reduce for a while that it should be better than stopping and restarting treatment. I hope he agrees with that. How are you doing? Sun is killing me trying to set through granddaughters ball games in the evening. Take care. Dale

[DallasStar_]

Hang in there My Friend, I will be thinking about you.
Please give an update as soon as you get one...

I will say an extra Prayer for you

As-Always
Dallas

[dyce]

dale,  I'd go with the imfo. mike and goof gave dude. Thease guys been thru it and ya can't beat experience . All I know is the peg effect the plates. My hmg today is 10.4 and man I can feel it. Anc's .8 . The heck we go thru to kill this bug , ha bud. My da-n insurance still won't kick the procrit til the hmg goes down more. Guess I'll have to wait.  

mike ,  Sorry to hear your ordeal here, from reading your post it sounds like you'll get this resolved. I'll pray to the big guy for ya!

[cajunlady]

Been away for awhile.  Lots has happened here.

DaleRay:  I am still in limbo with my counts I have been  WBC 2.8 - 2.1 Since Feb. in May it went up 3.1.   RBC 2.9  and now is 2.7.   HGB dropped under 10 in Feb, in March 9.8 and May 9.2
For awhile they were concerned about my plateletts; went to 91 and I had high IRON.  Wanted to draw blood to eliminated the high iron count.  Could not do that because they were afraid my bone marrow would not produce the plateletts back fast enough.  Then my plateletts upped themselves.  I am still in limbo with all counts and no rescue drugs for the blood and still work 5 days a week.  
I have faith that yours will be okay.  I will say a very extra special prayer for you.  Have Faith my friend; it will all work out. Only so few left, you will make it to the finish line.  I will pray hard for you.

MIKE:  Not quit up on you last problems.  You have been through alot and I think you have unbelievabl will to fight this.  I am sure you are in excellent hands with the doctors and will also pray for you.  Things will be fine.

MR. BB:  I am guessing you had another transfusion; I rather see that happen than you having to stop tx, when you are so close to the end.  Tomorrow should be shot 22.  Only like 3 more to go right.  Woo Hoo.


ALL:

I know that we all go through many different problems here and it gets very hard at times; But we are ALL SURVIVORS and if we keep each other with support though all of this.  WE WILL SUCCEED!!  ONE WAY OR ANOTHER!!.  Keep coming here for support; because it will always be here.  And for those of you that have to deal with people that want to treat you like you have the plague; those are the people that you do not need in your life AT ALL.  I am a very strong believer of CHARMA; EVERY DOG HAS ITS DAY; WHAT GOES AROUND COMES AROUND  etc...

I have a 1st cousin that is in the hospital right now with end stage liver disease. He fell from his bicycle and busted his
head on a curb; went home and slept for 2 day.  Lost 2/3 of his blood and had 4 pints of blood put back in him.  Now even if he could get a transplant he is too week to survive surgeory.  If he does leave the hospital (not likely) he will be in a nursing home with 24 hr. care.  This is a person that because of things that happened in my past, I should HATE very much; I do not at this moment have anything but heartache for him.  Even with the past history I can not hate him.  I am more angry at him for not doing something about his liver and why he did not seek correction sooner, than what took place years ago.

EVERYONE  HAVE  A  WONDERFUL  HOLIDAY  WEEKEND!!!!!!!!!!!!!!

C A J U N

[beamishboy]

good to see yu post-hope your #'s improve..your attitude is already Great!!..

[cajunlady]

LONG TIME  How have you been.  Thought about you the other day.  My girlfriend is coming to visit in July for 12 days.  Through thick and thin girlfriend if you know what I mean.  She's the best.  But, while she is out here, I have decided not to cancel my annual Tropical Party and will have it when she is here.  What made me think of you was the dinner menu.  I of course have to make my famous Crawfish Corn Soup, (it is like a chowder) AWESOME STUFF, but we are also going to have a roasted pig done for us.  Against the law for me to have a large fire to roast it in my back yard. So, we will have someone do this for us.  I think with tx, I will have most of this catered this year.  Don't want to chance not being able to wake up that day and not be able to accomplish what I need.  I have found a Double Sided Frozen drink machine.  One side Virgin and the other Margarita's.  Just because I can not consume the alcohol does not mean everyone else has to follow.  I will please all.

So, how is tx going for you.  Hope good.  Have a wonderful holiday weekend.

Cajun

[beamishboy]

sounds great! i'm visitin next year..tell your husband i'll bring a trowel and my appetite.just got a package from layfaette:roux and creole seasonings and 'slap ya mama'......oh and great bar-b-q sauce.....so i was thinkin of yu too,now if i just had me some of that roast pork..celebrate,a little

[couchpotato]

I just got home from work and am rushing off again for the evening but had to check in for your posting. Sorry to hear you are going to be subjected to all that testing (once again) but on the bright side, at least they are being thorough and leaving no stone unturned. That should give you confidence and knwoing already the expertise of your team, has got to make you feel a tiny bit better. Least you're not stuck somewhere in the boondocks with some quack.Right? You'll just have to hang steady through the week and believe that everything will be resolved quickly. Sorry, but I have to run. Thanks for getting back to us.

Wishing you the best
Mattie

[Mister beagle bailey]

It's good to see you posting again.  Sorry about your cousin, but how are you doing?  
Yes, shot 22 on Sunday with 2 to go.  If every thing goes well, I'll be done with shots 6/11 and riba 6/17.

BEAGLE

[lackalustre]

dr. told me the interferon drops the platelets. amazingly enough the riba keeps them from dropping.  so the ribaviran is good in that respect.  my platelets were low to start with and they droppped during tx. but not under 90.   they have never come up above 120 after tx. and its been 3 years.   and im clear.

[cajunlady]

Thought you only had two more after tomorrow.  YOU GO GUY!!  It will probably be nice to be settled again. Not go back and forth.  I have decided that I will out my kids from the computer this weekend and touch base here this weekend.  It is so hard to get my kids to share this thing.  Did shot 22/48 tonight.  Hope nygirl is on this weekend.  I hope she fixes her little problem.

cajun

[mikesimon]

I heard from my clinic. The word is that they want a 24 hour urine test next week to check creatinine and protein. And they want another set of labs and if the LFTs are not improved they want me to have a biopsy to look for rejction, inflamation (inflammation) and Hepatitis and anything else they can find. If I am having a rejection episode I will get a gram of intravenous Solumedrol which is a powerful steroid that absolutely flattens out the immue system. It also shocks the pancreas and liver so it isn't totally benign. That's my update. I'll just see wait and see how things look like next week. I want to thank all of you who have expressed interest and concern. You have helped me a lot. Mike