Information regarding my dad

[Rene’]

We received a call from my father’s doctor informing us to get to the emergency room ASAP! His blood work that was drawn on Tuesday showed a platelet count of 12, we went to the er & were admitted. The new blood work that was ordered showed a count of 20. We have been in the hospital since then, a hemotologist was called in last night & he ordered an ultrasound for today & a bone marrow test for tomorrow, he said that it would be 3-4 days for the bone marrow report. He said he would give my dad a shot of Procrit (?) tonight. I have heard this is a cancer drug! Should I be concerned even though the doctors have not mentioned cancer?

[patti]

Rene,

Procrit is a drug they give to try and stimulate the bone marrow to produce red blood cells. It depends on the numbers your particular doctor uses regarding his platelets. Although his platelets are low, everyone has a different “danger” level with low platelets and bleeding.

Had your dad already had a diganosis of a blood disorder or was this just a check up and you found out his blood work?

Until they do a bone marrow biopsy it would be hard to know what he has. MDS is a blood disorder kind of like a “pre-leukemia.” But until you get your dad’s results back it would be hard to know what he has. I know it’s hard waiting. I think that 3-4 day wait seems like eternity. Hang in there. Once you have the results we might be able to give you some better info.

Best wishes,

patti

[Rene’]

Patti,

Yes, this was discovered while doing a routine blood work up for a clinical study trial that he has been participating in for the last year for high blood pressure. This was the first time that his blood work up ever showed a problem. The night that he was admitted, he received a transfusion of platelets consisting of 12 units, they also ordered blood, but his blood has certain antibodies in it and they could not locate a 100% match. I’m trying to keep strong face on around my parents since the cancer word has never been mentioned, so as not to worry them. I’m due to leave for Florida on Friday and am realy torn about going. The trip can’t be postponed & my parents are saying go, and since we have just lost my mother-in-law just a few weeks ago, my husbad & children really need this time, but I am so afraid that if I go, the test results will be bad, but maybe if I stay they won’t. I know that isn’t rational thinking, but what can I say!

[kristyk]

Dear Rene’
We don’t always tend to think rationally when we are blind sighted by a crisis! I do the same thing. I was in your shoes late Feb 2005. Take a deep breath. SOunds like your dad is good hands. Start preparing a list of questions to ask the doctor. Also, although some docs might hesitate some, i think it is certainly ok to ask them what they think might be going on. What were the other counts in your Dad’s blood work…wbc rbc, hemoglobin etc.. I am learning that tells quite a bit, if in fact your dad might have a blood disorder/bone marrow disorder of some sort. Best of luck and hang in there! Kristy

[Suzanne]

Right now there are just unknowns. If you are in Texas and the news is MDS or AML He may be able to go to MD Anderson for a second opinion and possible treatments. They are a center of excellence for MDS if it turns out to be that. Most of us were diagnosed by accident without warning. I understand how scared you must be but let’s hope it is not an instantlife threatening crisis and that you and your family have some time to face whatever the test results are and make decisions.

[Neil]

Hi Rene,
Once the BMB results are in you will have a better understanding of what is going on.
If it is MDS make certain he has a hematologist experienced in treatimg MDS! This is very important!
Did he have any symptoms of low platelets? Bruising , bleeding, petechiae?
As a rule docs will not transfuse platelets till a patient is under 10,000 unless there are symptoms.
If they transfuse again make certain they use irradiated platelets. This will reduce the potential for any stray white cells that could cause antibodies. If they are going to transfuse more than a six pack ask for single donor platelets. They will function better. Single donor and irradiated platelets will extend the time he can continue to receive them. A patient will eventually become refractory to platelets and additional tx will not increase the count. He does not want a platelet tx unless he has symptoms!!
Some patients can get by with low platelets for years as long as there are no symptoms. Some of us can get by at 10,000 without significant problems while others have difficulty at 75,000.
These are point to discuss with a hematologist as his diagnosis unfolds. It can be a bit confusing till he has enough CBCs that will show any trends.
Procrit is a synthetic erythropoietin. A hormone produced in the kidneys that stimulates red cell production. If his epo is normal to high chances are it won’t help much. He also needs good iron levels for Procrit to work. If his iron is low he may need a supplement.
I have been getting Procrit for about 20 months. It has been working well. In a few cases (like mine) it also stimulates white cell and platelet production. My WBC and platelets go up between shots and settle back to their expected level by the next shot. A great side effect, but can’t always be counted on.
MDS patients are all different! We respond differently to the disease and to treatments. What works for one may or may not work for another.
Docs differ on whether bone marrow failure is a form of cancer. Mine says MDS is a form of cancer. Others claim ir is not. I really dont care. Have been living with it for over 8 years and have adjusted my life to accomodate the lab, doctor visits, BMBs, ultra caution driving and around power tools, avoiding crowds and grand kids with colds, viruses, etc. Lots of tell tale signs of when counts are dipping that each patient knows to watch for.
It takes a few months of CBCs, doc visits to get to know what is going on.
Again an experienced hematologist is a must. This is not a time for on the job training!
There have been great advances in treatments over the past year. Hopefully there will be some drugs that will help soon.
Neil

[Terri]

HI Rene, Same thing with my husband when dx he went in with flu/ cold like symptons and was spitting up some blood when he coughed they did routine blood work and immediately referred us to the Hemo. We got in within a day he did the BMB and yes we had that waiting and that was the worse.
Hang in there you will find so much help on this forum the people here have helped me so much

[Rene’]

To all who have responded,

Thanks so much for all of the information!!! It is wonderful to know that there are still people out there of care enough to give advice. The hematologist that they called in is independentally affilliated with MD Anderson, so I guess I feel pretty good about that. They did the bone marrow stain & biopsy today & the doctor also let me know that dads hemoglobulin? count was @ 9 and that they liked it to be 12-14 or in that area, so he started dad on steroids to try and raise it & also started him on an iron supplement. He said that if the steroids did not raise it signifigantlly, then he would just taper him off of them instead of keeping him on steroids. As I said earlier, thanks again to everyone. Please keep us in your prayers, as we will be sure to keep ya’ll. Please also say a prayer for our trip, as I stated earlier how much we need it after the past 11 months we have had. The area we are going is to Fort Walton Beach, Florida & the people we are to stay with have not had power since Sunday, so we are praying that this problem is resolved. I plan on calling their cell phone Friday morning to check before we load everyone up.

[Suzanne]

Hope you have a good break and can relax with your family to renew your strength. Sometimes life is just not fair.

[Neil]

Hi Rene,
Would be very confident he is getting excellent care at MD Anderson.
Another thought to bounce off the doc.
Dental problems can be difficult. Bleeding gums can become an issue. I take a very proactive approach. Brush after every meal and floss daily. Also use a Proxy Brush during the day. Get my teeth cleaned every 4 months. I want tostay ahead of the game and try to keep my gums as healthy as possible.
Also see an opthamologist annually and more frequently if there are any flashing lights in the corners of my eyes. If there is any aye problem, I call my hemo, explain what is going on and if he feels there might be a problem, he arranges for an emergency appointment with my opthamologist. Has happened twice over the years.
Would ask what his doc thinks.
Neil

[Rene’]

Neil,

The hospitailst on call yesterday came by dads room & said that he felt it be ok to go home even though dads levels were not where the hemo doc wanted them, so we left. Received a call at almost 11:00 pm from a very irate hemo doc. He had mentioned in his notes that he might let dad go as early as friday morning, but could be as late as Sunday. He did not want to release until so saw some additional labs. The good news is that the bone marrow was clean!!! Dad DOES NOT have bone cancer!!!!!YEA!!! HAPPY HAPPY THOUGHTS!!!! His diagnoisis is Thrombocytopenia and is severly B12 deficient. He said he that really had wanted to go ahead with some bolld transfusions, however, since dad had been released, it could just wait until 07/22/05 when he has dad come in for a follow up (I guess he plans on doing that in his office). We spoke to our friends in Florida and they now have water, electricity, the roads are cleared, beaches are open & hopefully we may be able to get in some deep sea fishing. LOTS OF THANKS AND PRAYERS TO ALL OF YOU DEAR SWEET PEOPLE OUT THERE.

Rene’

[Suzanne]

wonderful news! enjoy that trip!

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