A hematologist is an oncologist too.  I just saw mine yesterday, the exam room was a hop skip & a jump from the infusion room - he specializes in blood cancers, GI cancer, and blood disorders [ex: ITP].    

So according to my doctor on Wednesday, my stress test was good.  So I said nothing to worry about.  He says he wouldn't go that far, we have to figure out why I'm having these symptoms.   So now I am waiting to get a breathing test done. Doctor wants to rule out everything, like COPD. He asked if I was still walking with my sister and I said yes, I wasn't going to stop unless told to.  I forgot to ask if I would still see the specialist, but my sister seems to think I will.  It's been awhile and I haven't heard, so I don't know.

There's nothing to do unless the platelet count goes much lower. Changing doctors won't help as none of them will treat. There are no supplements or diet that will help. You and she are worrying unnecessarily. 

MelA wrote:

That was an expensive way to stop your doctor from talking about a splenectomy JJ!!
I take it that "NO" just didn't do the trick?!   Thankfully none of the hematologists I've had since 1989 never pushed a splenectomy!

No treatment was working at the time and the doctor said to do the indium test just in case a splenectomy became necessary. In the end I got myself on a trial for romiplostim and that worked so all was well. 

Has anyone used the parasite cleanse she speaks of called Parastroy by Nature's Secret that helped with her ITP? If so, how did your platelet count react during the two weeks of cleansing? What was your experience? I have just purchased Parastroy by Nature's Secret and am trying to get more details as to what to potentially expect while on the cleanse. Will update once I try it. Thank you and also a big thank you to Cindy1 for sharing!

Hello, has anyone used the parasite cleanse called Parastroy by Nature's Secret that has naturally helped fellow PDSA member Cindy1 with naturally healing her ITP? If so, how did your platelet count react during the two weeks of cleansing? What was your experience? I have just purchased Parastroy by Nature's Secret and would like to get more details on what to expect. Will update once I try it. Thank you and also a big thank you to Cindy1 for sharing her story!

No, I have not tried it and I will not try it without being told that I do have parasites and this stuff will take care of the problem - that would be like taking blood pressure medicine without having high blood pressure.   Also I wouldn't touch the stuff unless my hematologist looked at the ingredients first, I wouldn't take it even if he said the ingredients won't mess with my platelet count.    Sorry - know this isn't what you are looking for.  Good luck!

No, I have not tried it and I will not try it without being told that I do have parasites and this stuff will take care of the problem - that would be like taking blood pressure medicine without having high blood pressure.   Also I wouldn't touch the stuff unless my hematologist looked at the ingredients first, I wouldn't take it even if he said the ingredients won't mess with my platelet count.    Sorry - know this isn't what you are looking for. 


You asked this in 2 places and the above is what I wrote in the other location.

While researching parasite cleanse these were found:
   
"It's unlikely that the average person is walking around with active parasites in their gut," says Dr. Mannon. "I would question the usefulness of these parasite cleanses."

"The risks of parasite cleanses
Not only is there no upside to these cleanses (since no parasites are there to remove), there are many potential downsides. "The risks depend on the type of cleanse," says Dr. Mannon. Note that parasite cleanses are not tested to see if they work or if they're safe. They haven't gone through any type of Food and Drug Administration (FDA) review or approval process."
www.nebraskamed.com/gastrointestinal-care/gut-parasite-cleanses-like-paraguard-the-good-the-bad-and-the-ugly

Good luck!

Thank you MelA for your prompt reply. I respect your perspective. Has anyone used Parastroy? What was your experience?

Vancouver 40
Have you been diagnosed with a parasitic infection? 

They thought I had ITP for several years. My platelets kept on a slow slide down. No treatment was needed, I was told, until they got lower. A number of treatments were finally tried. I too was tired all the time. Finally, I had a bone marrow biopsy. It sounds terrible, but is no big deal. The use lidocaine. It doesn't hurt. There is a dull ache which goes away in a few days. It showed blasts in my bone marry. I have Leukemia. I am 76. I am now going through chemotherapy. While there are risks at this age, I am fortunate that I have Medicare and a good supplemental plan. While the treatment and the disease are dangerous stuff, I wish I got the bone marrow biopsy 10 tears ago. I hope I survive the treatment and have a few more years. 

Cindy, your doctor sounds thorough and that is good!  Has the breathing test been scheduled?   Can you email your doctor, or call his office, to ask if you will still be seeing the specialist?  

Mel, I'm still waiting for the breathing test appointment.
Just wasted 2 hours at emerg and plan on calling my doc tomorrow to see if I can get in to see him soon.
We had our 4th (and final, I hope) boosters on Thursday.  Now my arm is red and hot to the touch.  Triage nurse said it was a localized reaction.   I didn't feel like sitting there for 5 or 6 or 7 hours only to be told they couldn't do anything.  And I didn't want to miss my walk with Cathy!  The triage nurse did mark the red spot in case it grows.
So, we are going to be late getting out, but Cathy and I are going for our walk!  We're going to another park we have here in the city.  The only thing is, the trails there are mostly short ones.

Good heavens Cindy, that didn't happen with the other injections if I remember right.  Bless your heart - I don't blame you for getting out in the good weather & clean air with Cathy (plus I need photos to look at ) instead of waiting around.  Did they give you any tylenol or something to maybe quiet that reaction?  I'm so sorry!!

Nope, no reaction like this.  The first Moderna dose made me sick for a couple of days.  The ER triage nurse called it "localized reaction" and that it's normal.  He did suggest I not get Moderna again and take Tylenol.  According to the nurse who gave us our shots said as far as she knows, these will be the last ones.  Yeah, right!  With more variants coming out, I'm sure our government will suggest another booster.  I wouldn't mind if I had to get it once a year like the flu shot if it will keep me safe.
Steven's shot came out of the same bottle as mine and had no reaction.  I will say, the redness is almost gone and the heat isn't as bad.  Today makes day 5 and the arm is still a bit sore.
Pictures will be posted later this afternoon.  Enjoy them!  We went to the nature park.  Cathy actually bought a book on hiking in New Brunswick and has a few trails picked out for us.

My son was just a couple days shy of getting his 2nd booster when he came down with symptoms - he got it from his son who was just shy of getting his 1st injection as his age group finally was approved.  Interesting our young grandson was over his in 3 days and thankfully not real sick - our son had it not too good, high fever etc.    My fully vaccinated niece got it from her son who is fully vaccinated, her daughter fully vaccinated got it too.  The fully vaccinated husband of a friend just tested positive.  A friend who I haven't seen for quite a while because she refused to get vaccinated has it - what I don't get is she has a mother who is demented and she is there taking care of her and wouldn't get vaccinated knowing her mother is high risk, haven't heard yet if mother got it.    Just telling you all this because I think we will be having covid vaccines for a long time to come        

Nope, I wouldn't get another Moderna again - you have had 2 reactions to it.  

I haven't been on the computer till now so haven't seen the photos yet - it is late so I'll look tomorrow.   

I totally agree with you Mel!  This is going to be around for a very long time!
We received a notice from the landlord about still wearing masks in the common areas.  Yesterday, Steven had to go down to his office and thanked the LL for the notice.  Not that it really makes a difference, we would still be wearing our masks anyway.  We wear them in the stores or anyplace there are a lot of people.  People just don't care anymore.
Both of Cathy's kids had mild cases of it., but she and hubby both got away without it.
I couldn't wait to get my first shot so I could go see my mother in the nursing home.  I don't understand how your friend refuses to get vaccinated, especially since she takes care of her mother.
I hope your son, grandson and niece are all feeling better!  Steven says he has no doubt that we'll probably get it.  We'll just try to avoid it as best as possible.

In the UK we are going to get another covid vaccination in September or so. This time it is likely we will all get a Moderna updated for Omicron, so I'm told. It'll be my sixth! Fed up with them now.  

This was my fourth.  And I hear we have new variants forming, so I have no doubt we'll be getting another shot.
I'd be willing to get a yearly booster if I need to.
We've already had the Omicrom.  Not sure what the new one is.  Have you had any reactions to your shots, JJ?

The latest Omicron is called Centaurus or BA2.75. The newest vaccine should cope with BA4 and 5 too which the original vaccines don't.

Oddly I had a high temperature after the last vaccination which is the first time I've had any reaction. The blood test done at the same time showed that I had no B cells at all so made no antibodies but maybe something else was happening.

That's it, the BA2.
I think I only had a small fever with the first shot of Moderna.  All my other reactions have varied.  I'll probably have to go back to the Pfiezer if we need another booster.

Would like to read about any experiences (good & bad) with Lysteda, eltrombopag, avatrombopag. My husband's new hematologist recommended that he think about these drugs. His platelets yesterday were 27,000 and are very rarely above 30.

He has had ITP for over 20 years due to Benzene exposure. He never treats unless he has to have some type of a procedure, then he treats with dexamethasone and ivig. I told him that I would research these drugs then we would talk about it. The choice is totally his. I haven't even checked with the insurance company yet so that could answer for him right there if there isn't decent coverage.

I have no experience with these treatments, thankfully. 
Just curious if your husband has any symptom of low platelets with a 27k count?

No, he has no symptoms at all. If not for bloodwork, we'd never know it. He does not get petechia.  The only thing I can say is that if he cuts himself, he bleeds a little more then the average person and he has hem'roids that spring a leak occasionally.

He is 3 yrs overdue for his colonoscopy sooooo the dr is going to admit him for the prep. I feel much better about that. (He will have IvIg and dexamethasone prior to that as well.) I'd be terrified if he did the prep at home and started bleeding!

Maybe a little TMI but, hey, we're all struggling with this in one way or another.

What a lovely cat.

If your husband  doesn't have any symptoms why treat, (unless of course he is over 60 when treatment may be needed)?
Treating the count not the patient is against current guidelines  pdsa.org/images/InternationalConsensusReport2019.pdf  

Has Dex been tried without IVIg? It may be sufficient without IVIg.
It takes many many donations to produce one vial of IVIg so if not needed why give it?

Eltrombopag has dietary restrictions.I have been on it twice, the first time for 3 years the second time for 6 months  but lost response both times. It  depleted my ferritin so I required iron supplements,  is also caused insomnia and  frequent bowel actions up to 7-8 times day, 
I have no experience of the other 2 medications. 

He is over 60.

He only takes treatment when he has to have any type of procedure such as dental work, a colonoscopy, or anything that involves cutting of the skin no matter how minor. No doctor would touch him with a platelet count of 27k.  So, that's when he does the IVIG and dexa. He hasn't had that for years. After that, within days he's back to his "normal" low counts.

I would describe the new hema as "clinical." The other hema that left, never mentioned any of these drugs to us. We only saw him once a year. As you said, I believe he treated the patient, not the count unlike this new doctor.  But this new dr is concerned about the bleeding hem'roids which scares me a little too.

But having said that, he wasn't forceful about these drugs. He told us to look into them and it was ultimately my husband's decision.  We both agreed that this is a case where the "cure" is worse than the disease so we're out. I told him I'd post on here to get any feedback about the drugs but the research I've done so far has been enough.

My kitty is 15 yrs old. Yours is lovely as well. Heck, all cats are lovely!

Does anybody know if I could still have diarrhea because of Revolade, even though I quit taking it over a half year ago? It started with it and it's mentioned as a side effect but now it doesn't stop. I already had a colonoscopy and an endoscopy, plenty of allergy tests... during the endoscopy they discovered I have gastritis and gave me Pantoprazol, but they said it's not the reason for why I have diarrhea. I know this is not a forum for stomach and colon problems, but I thought it started with Revolade, so I wonder if anybody else has this experience? My counts are staying around 100-110 at the moment by the way, that's good...

I was just smiling at the beautiful cats the 3 of us have/had!
Mine is a female red/orange tabby which I understand is sort of rare - we called her Killian, The Queen of Everything & even the vet & techs called her The Queen.

I'm afraid my beautiful boy is no longer with us. He had a wonderful 17 years. 

Same with the Queen of Everything, she had 12 wonderful years - when she was about 3 Killian was diagnosed with chronic kidney disease, she did have a long happy life thanks to sub-Q fluids, she has been gone now for 12 years and is still missed terribly!