Girlfriend recently diagnosed

Good Morning,

Justin:

Most of us went about our normal lives with low counts and did not stay in bed. I was working with counts of 3k and was never hospitalized. A count above 20k or 30k is considered safe; normal counts are not needed for daily life. Symptoms are more important than the numbers, so you want to watch for serious symptoms like blood in urine or stool, gushing nose bleeds or mouth blisters.

Fear is normal in the beginning, but it fades in time as you learn more about ITP. It would be great if she would come here. There is a lot to learn and it will help her to calm down about it.

Welcome Justin, I am a concerned husband. It would be great if your girlfriend could join us on this site, but my wife Ellen does not participate here either. Ellen had her most recent treatment in August of 2014, when Rituxan put her in partial remission, which means her platelets are still below normal, but good enough to keep her safe and not require further treatment.

There is no such thing as a patient who knows too much, but most doctors - even hematologists - are not up-to-date on the latest treatments for ITP. For example, splenectomy is becoming "old medicine" as newer alternatives arrive. Also, practitioners are beginning to treat more conservatively, using less medicine and surgery and tolerating lower than normal platelets, under the realization that the treatments often do more harm than the disease. The newest treatments (Promacta and Nplate), which stimulate platelet production, are intended to keep platelet counts near 50k, not normal counts of 100-150k - in order to help avoid the possibility of blood clots.

I know that most doctors are averse to message boards, because patients bring in a lot of misinformation that they learned over the internet. But this website presents a wealth of up-to-date knowledge, based on solid scientific research as well as the experience of many people who have been living for years with ITP.

A recent diagnosis - one needs time to wrap their head around it.

Sandi,

Thank you for replying. I think the thought of 3k for her is very scary especially after living 39 years with no problems. I'll definitely watch out for those symptoms. I am definitely going to tell her about the site.

Justin

Rob,

So your wife has gone almost 2 years without treatment? That is promising to hear.

What I meant by a patient who knows too much is just that as a doctor she knows exactly what the counts mean when she is performing surgery on children. But yes I agree that she needs to now be more informed than ever on this. She is very scared of just the thought of any 'chemo' type treatments.

Justin:

I lived 35 years perfectly healthy when my low counts hit. That is common with ITP...it just hits. ITP can be triggered by medications (especially antibiotics), herbal supplements, stress or vaccines. I was diagnosed in 1998 and treated on and off for years, then went into remission in 2004 or 2005 and have been there since. Remissions happen all the time.

Rob is correct about many doctors not knowing much about ITP. Unless a doctor stays current with information from the top specialists, they do not know the current research. The people here do, because we read the current articles and the PDSA has a board of directors that includes those doctors. I've been on this site nearly every day since 1997 and have researched constantly. This is a very knowledgeable group.

I can provide some credible articles for your girlfriend if you think she would read them. The source is Bloodjournal.com. It doesn't get any better than that.

Also, regarding chemo treatments. Rituxan is not chemo, it is a biologic like Humira and Enbrel. Rituxan is used to treat some cancers in conjunction with true chemo, so it sometimes is misunderstood to be chemo. Very rarely do ITP patients need to use chemo. There are two of them that are sometimes used, Vincristine and Cytoxin. After being here for about 18 years, I've only ever seen a handful of people use them. They rarely work anyway, and there are much better treatments available now.

The most common definitions of "chemotherapy" are imprecise, and would incorrectly include Rituxan as "chemo".

There is huge discrepancy in the way that "chemo" or "chemotherapy" is defined, and this can be very confusing. In the broadest sense currently used, it can be any drug (including Rituxan) that kills cells in the treatment of cancer. This is also the most common definition of chemotherapy when you look it up online or in a dictionary. Wikipedia uses this definition, and even lists Rituxan as the chemotherapy drug with the highest gross sales worldwide.

The narrower - and more precise! - definition of chemo reflects what is normally thought of as chemo, the type that makes one's hair fall out. It kills fast-growing cells as they are in the process of multiplying, and in the process does a lot of collateral damage by killing otherwise healthy cells that also multiply quickly, such as hair cells and mucous membrane cells.

MD Anderson: "Traditional chemotherapy works by killing cells that multiply quickly, whether normal or cancerous. Targeted therapy, also called precision medicine, is different. It works by stopping or slowing the growth or spread of cancer."

Cancer Treatment Centers of America: "Chemotherapy is the use of anticancer drugs designed to slow or stop the growth of rapidly dividing cancer cells in the body."

Mayo Clinic: "Chemotherapy is a drug treatment that uses powerful chemicals to kill fast-growing cells in your body."

By this definition, Rituxan is not chemo: it is a targeted treatment, a monoclonal antibody, a biologic antineoplastic agent. It does not make one's hair fall out, or any of the other side effects of traditional chemotherapy.

Thank you all for your comments.

Sandi, I would appreciate any articles you could send my way. My email is justintocci75@gmail.com

Just an update, my girlfriend had an okay first week, but she was having really bad headaches and I had to take her back to the ER 3 days after being discharged from the initial diagnosis. Her platelets while in the hospital (without any ITP specific treatment) were at 96k, but they kept her overnight.

3 days after being discharged the second time, the Petechia came back along with headaches and soreness around her shoulders, neck and calf. The platelet count on this day were 9k, so a significant drop after 3 days of being home. The doctor put her on steroids again for 4 days (she is 2 days in to this treatment).

This is turning into a disorganized roller coaster...have other people had these same experiences? I wish this was more easy to control.

It can take a while to get stable. Many of us go through that. I really think she needs a second opinion though. This doctor seems to be setting her up with treatments that are going to fail. Both IVIG and Decadron can be very temporary, and are used as rescue treatments. Neither are known to last long-term. Decadron also has horrible side effects. This will be an endless cycle if he keeps treating like this. There are other options.

I will send you the articles later; I have to run out right now.

She could possibly be getting aseptic meningitis from the IVIG. It can occur 12 to 48 hours after the infusion. It's a common side effect and can be avoided if done properly. It will cause an extreme headache and stiff neck, among other things, and resolves after a few days.

Justin

www.ebmt.org/Contents/Resources/Library/Resourcesfornurses/Documents/ITP%20Handbook.PDF

Anne

Justin--I don't have as much helpful research to share with you, because I'm new to this journey as well, and still trying to figure it out. However, I'm a few months ahead of your girlfriend, having been diagnosed in February.

I just want to offer a bit of hope. It was SO SCARY for me in the beginning, and depressing, and overwhelming, and hard. But, even a few months later, and even without a firm plan of how this is all going to work out for me, and even without being in remission (yet--I firmly believe that's a "yet" for me), I am more at peace, and have more hope than I ever would have thought possible back in February, and even just a month ago. It gets better. This forum is a great source of information and advice, and as you and your girlfriend travel the road and learn more of what you can expect, it gets much much better.

A few posts and articles that I have found particularly helpful so far:

pdsa.org/forum-sp-534/5-newly-diagnosed-a-frequently-asked-questions/8344-excellent-advice-for-newly-diagnosed.html


www.bloodjournal.org/content/115/2/168.full?sso-checked=true (This is an article published in the Journal of Blood by A global committee of 22 ITP clinicians and researchers. It summarizes the best information on treating ITP. It's six years old, but I've found it very helpful)

www.epageflip.net/i/430088-winter-2015

www.ebmt.org/Contents/Resources/Library/Resourcesfornurses/Documents/ITP%20Handbook.PDF