guidance for my 85 yr old mom, please

Hi,
My mom went in the hospital mid-December being dizzy with low platelets of 20K. She had a bone marrow biopsy done where they determined that she has "surpressed" platelets and 5% low grade lymphoma. Doc says it's nothing that they typically treat for the elderly. He is stumped on what is causing her low platelets. She has been on 20mg of Prednisone for 11 weeks. All the while the platelets have been hovering around 14K-19K with weekly blood draws. Her platelets just dropped to 9K so she was given a platelet transfusion four days ago. The doc now wants to try her on Rituxan treatment for the next four weeks.

Overall, my mom has been healthy her entire life with no medications to speak of except high cholesterol meds the past few years. She goes dancing 3 days a week and has an active lifestyle. Being undiagnosed and doing the watchful waiting has been stressful on her to say the least.

Do you have any suggestions from foods, natural herbs or anything else that she could try to increase the platelets? Is Rituxan the right direction to go from your experience? She did start eating Kale, garlic and romaine lettuce this week per suggestions I found on the web.

We are feeling a little helpless on the direction to take for her treatment.

In gratitude of your insights,
Cheryl

Cheryl:

Kudos to your Mom for staying healthy for so long! That's great!

I'm a little confused about why the doctor doesn't know why her platelets are low. Did he diagnose ITP or does he think it's due to the lymphoma? How did they determine her platelets are suppressed? Suppressed by what - bone marrow production?

Honestly, I don't know in which treatment direction she should go since they don't know what is causing it. Rituxan is a fairly easy treatment for most. The side effects sound scary, but it is generally well tolerated.

In my experience here on the Forum (14 years), I have not seen any credible evidence that food or herbals do anything for platelets. An occassional person might report a rise in counts by doing something different, but that same thing would not work for the next person.

Hi Sandi,
Thank you for your reply, it is greatly appreciated. It helps to know that I have an outlet to express my concerns.

The doctor has not determined that she has ITP and did not believe the platelets were suppressed due to the small amount of lymphoma she has, however he did say the bone marrow production was not taking place as it should. The cause has not be determined yet, it is still unclear. Rituxan treatment was what he believes is her only next step. We do not know enough to question his suggestion. I am not sure if we should seek a second option, even though her doctor has stated more then once that he has taken her case to the panel of other doctors for their opinions. I do not even know if there should be other tests or scans that should be done to find out the route cause of the low platelets.

We will be heading to the doctor tomorrow to hear more about Rituxan with the uncertainty if she will start treatment right away or not. We will also hear if the platelet transfusion she received four days ago has made any improvement. Based on how she is feeling, it seems that it helped a little with her dizziness. But I also know that transfusions only last 3-4 days at best.

If you know of any other tests that should be done, I am open to learning more.

In gratitude,
Cheryl

From my PERSONAL experiences, ( I have no professional medical qualifications) I'd absolutely want a second opinion, from a hematologist, for several reasons, some things the seem a little "fishy" to me:

The doctor had her on prednisone for 11 WEEKS with no increase in her count - I believe the Dr. should have realized the pred was not helping long before 11 weeks and tapered her off of it.

Dr. should know, and told you, that ITP is not "diagnosed" in the usual sense: Once every known condition that may cause low platelet's is ruled OUT, then they call it "ITP". Dr. should have reviewed all scenarios with you, not be "stumped" as to why her count is low. If he/she is "stumped", then why is he considering Rituxan? That would imply he believes it's ITP!

The Dr. persisted with platelets transfusions that were not working. Why?

If her bone marrow is not producing platelets, then treatments that suppress her immune system would not increase her count. There are a couple of treatments (IF it's determined that she actually does have ITP) that increase platelet production, however this may not be appropriate because of her lymphoma.

You will find that this is a condition where any given treatment may work, not work, or work temporarily. It's VERY frustrating! You need a Dr. who specializes in blood disorders to discuss all of the options, and, new treatments seem to be increasing, so you need someone who's up-to-date on the latest treatments!!

Good luck!!

PS - went back and noticed she taking garlic. Garlic can make plateletes LESS sticky!!

Yes, it does seem like an odd treatment choice if she isn't producing platelets. I'd assume they looked at MDS as a possible diagnosis, although sometimes that can take a while to show up (it's more common over the age of 60).

Not knowing the situation and not being a doctor, I cannot advise you. It's possible that Rituxan is the best treatment choice, but you won't know until you try it.

Most people with ITP generally don't get more than a few hours from platelet transfusions, so they are a futile treatment. However, it may be more appropriate in an older patient due to the tendancy to bleed more than a younger person.

Good luck tomorrow and let us know how it goes.

I'm not very knowledgable about this, but when I went on Rituxin for my ITP (and I tolerated it fine, though it didn't raise my platelets), I was told by my hema and/or the infusion clinic staff that Rituxin had been quite successful for treating some lymphomas--and people really liked it because it had so many fewer side effects than most lymphoma treatments.

A friend of ours got Rituxan after her chemo treatments for Non Hodgkins Lympoma. That was about 2 years ago now and she's fine.

Thank you everyone for you insights. I don't feel so alone being able to discuss this matter with you all.

The latest news from this week... in the past 13 days, my mom has received three platelet transfusions, a blood transfusion, and received on treatment of Rituxan two days ago. She is starting to look like a pin cushion to say the least. After the transfusions, she certainly has had more energy and feeling more like herself. The Rituxan treatment did get her tired, however, today she's back to doing her laundry.

In the meantime, we have asked to get a second opinion from Mayo Clinic, which is scheduled for next Tuesday. My mom wanted to go through the four treatments of Rituxan before going to Mayo, however, the family feels the sooner the better to get a second opinion since her original Hemotology Doc states, "there is no way of knowing for sure whether the Rituxan treatment will help, but I do think the downside is fairly low. Her platelets are down below 10,000. She still is on 20 mg of Predisone.

So we wait... and hope that Mayo Clinic will run more tests and come up with some answers next week. Until then family spends as much time with Grandma as possible, while she is feeling up to it.

My blessing
Cheryl