HELP! 72 yrs old & 50 days in hospital b/c of ITP

I need help. My mom is 72 years old and was diagnosed with ITP 50 days ago. The week she was diagnosed she was an active elementary school substitute who was subbing 4-5 days a week in 1st-3rd grades. Today, she has been in the hospital for 50 days, can barely walk 100 feet and has aged 10+ years in 50 days.

Her hematologist, Dr Nassim Nabbout in Wichita, KS, has consulted with Dr. James George of the University of Oklahoma and Dr. Donald Arnold in Canada. I believe they are doing all they can, but they also paint a very grim picture that are the exact opposite of the hope-filled stories I read on this site. That's why I'm sharing her story and asking for advice.

We've been told her ITP is extremely refractory, and she is an extremely rare case. On Saturday, Feb 28, 2015, she went to the emergency room for severe bruising, discovered her platelets were 3,000, and she was admitted to the hospital immediately. By Thursday, March 5, they had gotten her platelets up to 61,000 and released her from the hospital. On Monday, March 9, she went back to the hospital to check the platelets and they had dropped to 0. She has been in the hospital since March 9 and had numerous drugs and treatments including, but not limited to, IVIG, Promacta, Nplate, Rituxin, and had a splenectomy. Today, she is on Velcade, a chemotherapy drug, and also getting Promacta and Nplate. During this entire time, her platelets have stayed between 1,000-6,000.

In addition to ITP, one of the steroid medicines given at the beginning seems to have caused stomach ulcers which caused her to have internal bleeding, low hemoglobin, and black stools. Her hemoglobin dropped to as low as 6.0 on March 22, and she received 2-3 units of whole blood for 10+ days while we waited for the bleeding to stop. After 2 endoscopies and a GI specialist cauterizing some ulcers in her stomach, they think they have the bleeding stopped and her hemoglobin seems to have stabilized for the past 7 days (around 9.0-9.9).

In addition to all of the above, because she has been in the hospital 50 days this past week she developed pneumonia and 2 other infections that they've called an infectious disease doctor in to try and help identify.

It's amazing how life can change so much in 50 days! I'm her 37-year-old-daughter that is screaming and crying on the inside because I feel like my mom's life and health has been stolen from her -- both by ITP and the hospital. I'm appreciative of doctors who are trying to help, but what I hear doctors say and what I read on this site contradict each other.

Here are my questions that I'm hoping this community can help me with:
1. Is it possible to live a normal life outside of the hospital with 10,000 or less platelets?

2. If yes, please provide the name and city of U.S. doctors that will support a patient doing this. (As of now, our doctors have repeatedly painted a very grim and hopeless picture. They've said with platelets under 10,000, you can die at any moment -- and they'll even snap their fingers in my mom's face as added emphasis).

3. How do you transition from being on numerous drugs inside a hospital (she is on 3+ hours of IV drugs/day, and 10+ pills a day) to living a relatively normal life outside of hospital walls?

4. For those with platelets under 10,000, what's your life like? What do you do or not do because of ITP?

5. How do I as her daughter provide hope that a diagnosis of ITP doesn't mean it's the end of her life (assuming that the hope-filled stories I read on this site also can apply to my mom at 72 yrs old). As mentioned above, the doctors have only painted a hopeless picture. You can only hear a hopeless message for so long before you start to believe them and give up. How do I encourage both her and my dad that this isn't the end -- it's only a big bump in the road that we need to learn how to manage?

Thank you for your help and advice.

Jessica

Jessica:

Most people do okay with counts under 10,000, but the risks go up for the elderly because they do not have strong blood vessels like younger people do. That does not mean that there is no hope and I can't believe her doctors are so negative in front of you and your Mom. That seems pretty callous to me. I have seen elderly people in the same situation as your Mom eventually respond and go home. Have they done a bone marrow biopsy? That is recommended in patients over 60.

Questions:

1. Is it possible to live a normal life outside of the hospital with 10,000 or less platelets? Yes, but it depends on the symptoms of the patient. Some people have more bleeding than others.

2. If yes, please provide the name and city of U.S. doctors that will support a patient doing this. (As of now, our doctors have repeatedly painted a very grim and hopeless picture. They've said with platelets under 10,000, you can die at any moment -- and they'll even snap their fingers in my mom's face as added emphasis). I cannot provide the name of a doctor or hospital, but I can assure you that many people do. They cannot keep a person in the hospital forever so eventually, people do go home. I was working with counts of 3k, but I only had bruises and petechiae. I'll try to find some stories from people here.

3. How do you transition from being on numerous drugs inside a hospital (she is on 3+ hours of IV drugs/day, and 10+ pills a day) to living a relatively normal life outside of hospital walls? That depends on the situation. If a treatment begins to stabilize counts (such as N-Plate), then she would only go once a week to have a CBC and get the shot. What are all the pills and what is the IV?

4. For those with platelets under 10,000, what's your life like? What do you do or not do because of ITP? Most of the people who live with low counts lead a relatively normal life, and in time, they know what they can and cannot do. Mainly, they avoid activities in which they could get hurt, like skiing.

5. How do I as her daughter provide hope that a diagnosis of ITP doesn't mean it's the end of her life (assuming that the hope-filled stories I read on this site also can apply to my mom at 72 yrs old). As mentioned above, the doctors have only painted a hopeless picture. You can only hear a hopeless message for so long before you start to believe them and give up. How do I encourage both her and my dad that this isn't the end -- it's only a big bump in the road that we need to learn how to manage? The fact that your Mom has pneumonia and other infections does complicate things. Hopefully, she will recover from those and move on. As for how to stay hopeful, I wish I had the answers to that. I am going through something similar with my own mother (different situation), but she went from a healthy 77 year old full time employee a year ago to a woman who can barely walk and has dementia. One day at a time, one crisis at a time.

I cannot tell you that everything will be fine. I don't know that. But I can tell you that I've had other members here, even young ones, who were told they were going to die. They didn't. I cannot believe they are so negative. Assuming that your Mom does in fact have ITP, there is every reason to hope that she will respond to something. N-Plate and Promacta both have good success rates, but they can take a few weeks to work. I've actually never heard of anyone using both at the same time. The stories you are reading here are real. Very few people die from ITP, but as I said, age and other complications can be a factor.

pdsa.org/forum-sp-534/5-newly-diagnosed-a-frequently-asked-questions/26725-scared-cant-get-level-above-3.html#27467

pdsa.org/forum-sp-534/5-newly-diagnosed-a-frequently-asked-questions/28018-looking-for-some-answers.html#40622

pdsa.org/forum-sp-534/5-newly-diagnosed-a-frequently-asked-questions/27214-80-year-old-with-refractory-itp.html#31248

pdsa.org/forum-sp-534/6-general-itp-discussion/24252-refractory-itp-not-responding-to-treatment.html#24385

pdsa.org/forum-sp-534/8-natural-treatment-methods/28261-what-worked-for-my-dad.html#43287

pdsa.org/forum-sp-534/5-newly-diagnosed-a-frequently-asked-questions/26725-scared-cant-get-level-above-3.html#27820

Thank you for all of your help. Yes, she has had a bone marrow biopsy. It came back as fine, and then the doctors sent it to Mayo clinic for a second opinion. We're still waiting on Mayo's full results, but so far, they've said that the biopsy came back good. I've been told that Mayo confirmed that it's not MDS.

That's good news! With ITP you have to be patient. I know it's hard. No one can say that she is failing every treatment until the proper time for each treatment has passed. For example, you cannot say that after only two weeks of N-Plate that it has failed. Using multiple treatments at once can confuse things since you don't know which one is actually working when a response occurs. Sometimes patients are taken off of a treatment way too soon and don't give it enough time to work. I've never heard of Velcade used for ITP and one of the side effects can be low platelets so you might want to question where they got the idea to use that drug. Antibiotics and other meds can also cause low platelets so nothing might happen until her infections are gone and she is just on ITP meds. All Hemo's are not experienced with ITP and they usually don't use the kitchen sink method if they know what they are doing. Experienced Hemo's also would project a realistic rather than a pessimistic outcome.

I'd take a look at her symptoms after she gets over the infections and discuss the possibility of discharging her with out-patient care. Sometimes people are better off at home because of the high risk of infections and immobility in the hospital. My Mom broke her hip last year and although that wasn't life threatening, she did develop a Pulmonary Embolism and pneumonia which nearly killed her. Low platelets can be serious but it depends on symptoms, not counts, and your Mom seems to have a cascade of events occurring due to the treatments and hospitalization.

Thank you so much for getting back to me and the encouraging words. I greatly appreciate it!

So sorry you and mom are having such a bad time! Sounds terribly stressful. When I was first diagnosed I read on the Mayo Clinic website that the treatments for ITP can be worse that the disease. For me it was good to know. I have had good luck with Nplate and like Sandi said, don't give up on these drugs- they need time to work.

I read about Velcade which is a cancer drug. It helped a woman who had suffered with chronic brain bleeds. wow they are really bringing in the BIG guns for your mom! Its hard to say whats right because no one knows what her risk for brain bleed is. She might be okay at low counts but no one really knows. Seems doctors are imagining she is at a very great risk.?? Of course its not really SAFE to have counts under 10K, but the treatments aren't safe either so sometimes you pick your poison.

I have had ITP for 8 years. In that time I lived with counts around 10K for 2+ years, and counts under 10K for probably 6mos total, counts recorded at 1K 2k 3k. I was always fine, no problems- yes some bruises. My first hemo warned me to not hit my head. So, of course I was walking my dog, fell and hit my head on the street. Two black eyes but totally fine. But thats me and we are ALL very different.

Doctors are all over the place on how aggressively to treat low counts. Early on when I knew nothing about ITP, I went to the emergency room because my platelets were 6K- I thought I was having a cerebral hemorrhage. But in the ER they basically told me nothing was wrong with me- "call your doctor on Monday" they said, and sent me home with 80mg prednisone and a bill for $2500. I felt like an idiot, but I guess it was a blessing because if ever I feel worried over ITP, I always remember the ER doctor assuring me that I was fine.

Seems everyone has to get to know their bodies, get to know their ITP, what they can do, and what is safe. That takes time.

Say, btw I always wonder how do they do a splenectomy when they can't get someone's platelet count up? It has happened more than once around here. Also what got her counts up to 61,000? just curious- hope something works soon- good luck!

I might add to my story that I didn't have any bleeding in the ER, no serious symptoms so that makes a big difference. Also I was 50 years old. Since your mom has had active gastro bleeding that would be more worrisome.

Have you spoken to Dr George directly? Have you read his website? That might be a way to get a second opinion and ask some questions. He seems to have a calm approach and lots of experience- I enjoy his website, very common sense. A fellow (from California) on the forum had a good experience talking to him, getting advice. Plus you are close to OK City if you and your mom ever want to visit him in person.

Try not to worry too much about the future- there are options! Sometimes getting the right doctor changes everything. best luck

Thank you for your reply and encouragement. Regarding your question on how they do the spelenctomy with a low platelet count -- from my perspective, it was a miracle. I'm definitely not a doctor, but my understanding is that they gave her continuous platelets during and throughout surgery to try and help her body clot while they were removing her spleen.

Jessica, how is your mom doing?

She no longer has to worry about platelets or doctors. She passed away from ITP on Thursday, April 30. Thank you for asking about her.

www.caringbridge.org/visit/clairemyers

I'm so sorry. ITP can be especially hard on the elderly, especially when there are other complications like your Mom had. Thank you for letting us know.

That is horribly tragic. I would never think of 72 as elderly or have predicted such a terrible end. My thoughts are with you and your family.

I'm so sorry for your loss. Your family is in my prayers.

Sorry for your loss. Prayers to you and your family.

So sorry for your loss

In the ITP world, unfortunately, 72 is considered elderly. I read your story, Jessica, and my heart goes out to you and your family.

The management of ITP in elderly raises several questions that have not been fully addressed in the literature. To assess the impact of ITP in elderly, a case-control study was performed. The main characteristics at onset and the outcome of ITP in 55 patients aged of 70 years and above (cases) were compared with those of 97 younger adults (controls) seen at the same tertiary referral institution. The mean age at diagnosis was respectively 77.8±6.1 years (cases) and 40.3±14.9 years (controls). While the median platelet count at time of diagnosis was not significantly different in cases and controls (6×109/L, range: 2–26 versus 12×109/L: 5–21.5), bleeding symptoms were more frequent in cases (82%) than in the controls (68%, p=0.07), and the median bleeding score was significantly higher in elderly (p=0.001). The rate of treatment-related adverse events was more than twofold higher in elderly patients and the mean cumulative duration of hospital stay for ITP during the follow-up period was much longer when compared to the controls (p<0.0001). Three ITP-related deaths (5.4%) including 1 from intracranial hemorrhage occurred in the cases but none in the controls. In conclusion, this study confirms that at equivalent platelet count, ITP has a greater impact in elderly. Am. J. Hematol. 2011. © 2011 Wiley-Liss, Inc.

onlinelibrary.wiley.com/doi/10.1002/ajh.22170/abstract

Jessica I am so sorry for your loss - my thoughts are with you and your family.

Thoughts and Prayers!

so sorry for your loss!!!