17 years wait and watch

[pray for my dad]

Hi All,

I am new here and I just wanna share my dad's story....... I don't know what I can do at this moment......I am opening to any ideas.

My dad was found out low platelets in 1995. It was 50. Not sure how long exactly took him to drop from normal to 50. He probably had it for long long time but he never even found out. Doctors didn't do anything about it. Just wait and watch. In 2004 he did some heavy duty mech job which involved a lot of paint thinners, suddenly his platelets dropped down to 20-30 range, has been stable since then. Last two counts were 24, a month later (late Feb 2012) was 28. slightly low for his HBG, ranging between 117-125 but he is not a meat lover at all. White cells have been around 4 range. not below the alarming line yet.... It's been 17 years now.....Not sure what is going to happen......They are rebooking his bone marrow biopsy.......They are pretty sure it's MDS.....

Any good suggestions? I am so scared of the aggressive chemotherapies. He is 63. Healthy otherwise. I am a RN myself and I've seen people taking chemo.......I am so scared that if he actually will get worse.....I can't count how many times I look after patients who got cancers and decided to take the aggressive therapies but didn't survive the chemo/surgery.

He is not bleeding at all at this point. In fact even when he had his teeth pulled out he was bleeding just a little bit longer than normal people. no concerns at all....

What about transfusion dependent?? not sure how long that will last him. A doctor that I work with told me that our body tend to eat up those transfused platelets so it will eventually stop working.

I've never done hematology units so I have no clue at all.

Thank you all for reading my post and may God bless us and bless those new drug trials.

[Greg H]

Hi there!

Unlike the old days, there are several therapies for MDS now, some FDA-approved and some in clinical trials. A lot will depend on what the bone marrow biopsy shows. Most of the drugs that are used for MDS have significant side effects, but they aren't really "chemo." That is, they aren't cytotoxic drugs that try to wipe out cancer cells and wind up wiping out a lot of other stuff in the process. In short, they aren't as harsh as "chemo."

The FDA-Approved drugs Vidaza and Dacogen are used for higher-risk MDS patients. If your Dad has a chromosomal abnormality called deletion 5q, then another drug called Revlimid might be the choice. Certain other characteristics might suggest trying immunosuppressants, like ATG and cyclosporine.

There's a drug in clinical trial right now called Promacta that specifically aims to increase platelet production.

So, there are a variety of options, and none of them as scary as "chemo."

Have you checked out the AA&MDS website at http://www.aamds.org/? There's lots of good info there about MDS.

Once you have the results of your Dad's BMB, if you need help interpreting it, just ask around here. Folks can help.

Take Care!

Greg

[pray for my dad]

Thank you so much for reading my post and replying to me.....

This is totally new so I am learning as much as possible. I went to the website you gave to me and your blog.

How painful was the BMB? I've assisted a few cases as a student nurse when I did my medicine rotation (I am working in obstetrics now so have no clue at all). I remember it was very painful and my patients suffered a lot......Is it going to bleed a lot after? I requested to have the BMB done at my hospital and it's going to be the outpatient department. I am just praying that my dad can keep everything the same......

I've read a lot of the negative feedbacks about those new drugs, especially some of them initially would even decrease the platelet count........

Again, thank you so much!!

[Hopeful]

Hi,

I've had an intern scream and almost faint while watching my BMB I think it was a lot harder on her than it was for me, as I couldn't see a thing. The pain is sharp but short. I've had BMBs done when my platelets were below 15 with no problem. The doctors just apply a lot of pressure and use pressure bandages afterwards. Your father should be okay through the procedure. It is great that you are there to support him!

[Neil Cuadra]

Search these forums and you'll find a number of discussions about bone marrow biopsies, with a rather wide range of opinions about the level of discomfort. Some shrug it off while others consider it to be an ordeal.

[Greg H]

Hey PFMD!

We just had a big discussion about pain during BMBs here. Some folks ask for sedation -- or even general anesthesia. Like Hopeful, I'm one of those folks who don't find them all that bad, but I know lots of folks who find them excruciating.

While the MDS drugs aren't chemo -- they won't generally make your hair fall out -- they are very strong drugs, with real side effects. Unfortunately, the three main ones, Vidaza, Dacogen, and Revlimid, do all suppress counts at first. They make you sicker before they make you better. Plenty of folks can't tolerate one or the other of them.

Some folks can tolerate very low platelets, like your Dad seems to be doing, without having bleeding problems.

I wouldn't panic yet. Lots of folks live with lower-risk MDS for years and years. You'll know more when you get his BMB results.

If he does have MDS, before you start treatment, I think most of us on this forum would strongly encourage you to seek a consultation with an MDS expert, perhaps at one of the university or teaching hospitals. Local hematologists, even the best ones, don't actually see a lot of MDS cases, so it's a really good idea to get someone who has treated a lot of MDS to look at his case -- before treatment starts.

Take care!

Greg

[tytd]

Hello, I'm posting to let you and your Dad know that it is possible for some people to live with very low platelets (especially if the other counts are not too low and the platelets are functioning well). It does take a toll on your mind but you just have to "keep calm and carry on" and avoid the "hard knocks". I, like you Dad, had a moderately low platelet count for more than 25 years. It wasn't until 3 1/2 years ago when my platelets dropped to the mid 20 range that I finally got a BMB and was diagnosed with MDS. I sought out a few expert opinions then and finally settled into "watch and wait". I've tolerated a platelet count of less than 22k for more than 2 years now.
It is possible that your Dad could have ITP or some other reason for his low platelets but the anemia is worrisome for MDS. I would not worry about the BMB as, like Hopeful, I have had them without problems with a platelet count of 18k. (maybe a little more bruising and oozing than the normal).
Tell your Dad to learn all he can about his diagnosis, get expert opinions about managing it, avoid drugs and supplements that could affect his platelets, and be cautious to avoid any injuries or bleeds. Then try to "forgetaboutit" and not let the disease control his life.(easier said than done)
I am indebted to all the courageous people who post on this website and inspire me and inform me every day. If you or your Dad would like to speak with me after he gets his BMB, I'd be happy to do so. Good Luck tytd

[triumphe64]

Since you are a nurse, they may let you be with your dad during the BMB. Distractions like that help lower the pain level.

[Al's Wife]

Because my husband has had a horrible experience with BMB and no sedation, he now takes sedation. A nurse told us last time, why would anyone even want to do it without sedation when having sedation makes it go so much easier! To each his own, I guess. I have such a low pain tolerance that they'd have to put me to sleep to even tell me I was going to have to have one.
Good luck to your Dad. My husband too has low platelets. He didn't respond to Vidaza and tried two clinical trials with no results. So we are now in a Watch and Wait mode. We see the doctor this Friday and will get labs. I'm just hoping and praying that the platelets are holding steady.

[Sally C]

Hi Pray for my Dad and Linda,
I wanted to respond regarding platelets. I won't go into detail here as I have in other posts that you can read. My husband Don started Promacta (eltrombopag) at National Institututes of Health in Bethesda, Md. in March, 2011 and has had a great response considering he had been transfusion dependent since 1/09. He hasn't needed any platelets since last spring and only one red cell transfusion in Oct. My posts are under "clinical trials". If you have any questions please feel free to e-mail me at shcalvert3@aol.com.
God Bless and best of luck!
Sally

[Rosemary]

Hi! Just a word about the bone marrow biopsy. They had to scrape me off the wall when they said the doctor was going to do one, but he froze me first, and talked all the way through it, and it wasn't too bad. He told me I would feel some "pulling" when he got the bone marrow out, and I did, but no pain. Afterwards there wasn't any bleeding, just a bit of soreness at the site for a day or two, but nothing that stopped me doing my normal things. Now it seems to be different with everyone, as an MDS friend said hers was awful, or perhaps it's the way the hospital does them.
I am on Revlimid and my platelets and white count have dropped, but that is a side effect. It's hard to avoid bumps and bruises, and my hands and arms look a mess. I gather that platelet transfusions don't last long in the body, and the body can soon develop a resistance to them, which causes problems, so they are a last resort. If he isn't bleeding badly, it might be as well to leave them for emergencies.
Good luck to your father on his journey. I have been living with MDS over three years since diagnosis, and I carry on as normal, but rest in the afternoons. You have to listen to your body and don't push it too much if it doesn't feel like it.

[pray for my dad]

Thanks to ALL of you who reponded to my post.
I talked to a ER resident who happened to be on my labour and delivery ward today about the BMB. She said she would suggest to ask for the sedation. That's what I am going to do for sure.

To Greg,
We are in Canada but we are seeing a hematologist in a university teaching hospital. Hopefully she sees enough MDS cases. I did ask around and I know she's got pretty good reputations...

It's scary because when I used to work in a long term care facility, I have had a patient with MDS.

Since we are not in US, the NIH trials will not even be a choice for us......

Again, thank you so much!
May God continue to bless us all

[kgtuck]

Wanted to post a reply re: drug treatment, Dacogen, being close in age to your dad and both of us having no other significant health problems. I do want to mention one thing about the treatment, if he, in fact, is prescribed one of the demethylating drugs, be patient. The drug may take anywhere from 3-6 months or sometimes longer to improve the symptoms, and there may be transfusions, etc. to go through during those months, but like others have mentioned on this site, just take each day at a time and you'll get through those first few months and be prepared to get alot of rest!! In my case and many others the numbers will jump up and down during those months. For me platelets, white cells, and hemoglobin were all low to start out. After 3 months, all began jumping higher and higher and I've been stable for almost 3 years now (with monthly treatments and independent of transfusions). Looking back, being scared to death, was my worst problem! Just take it easy and be patient!! Best of luck for your dad.

[Greg H]

Hey PFMD!
Though travel might be an issue, depending on where you are in Canada, I can assure you that NIH trials are open to folks from all over the world. There's no charge for their screenings or treatment; you typically pay for your own travel and then, of course, bear the cost of follow-up with your local physician.

Here's the NIH page on visa info. I note a specific section for Canadian patients on that page:

Canadian patients who have long-term treatments at NIH (4 months or more), should ask for a B-2 visa so that they can extend their stay in the U.S. after they have been in the U.S. for 6 months. All Canadian patients, including those who enter the U.S. without a B-2 visa, must get a white Form I-94 (from the flight attendant or when they have landed) and complete it before going through Customs. The Customs and Border Protection agent must stamp this form. All Canadian patients should have their passports stamped with a date of entry. This is very important for Canadian patients who travel by land.

Aside from NIH, the maker of Promacta, Glaxo Smith Kline, is recruiting patients in Canada for this trial.

Of course, all that's a bit premature until you know whether your Dad actually has MDS -- and has MDS that needs to be treated.

I'm glad to hear you're with a specialist. I listened in on a group phone call with Dr. Karen Yee at Princess Margaret Hospital in Toronto. She was terrific!

Good luck to you and your Dad!

Greg

[Sally C]

May I add to what Greg said - the first NIH trials with Promacta were with their Aplastic Anemia patients. They had such good luck with platelets and red cells that they decided to give it a try with their MDS patients. But whatever the disease, they are on the cutting edge - and as Greg said - all expenses at NIH are free to the patient.
God Bless,
Sally

[pray for my dad]

Originally Posted by Greg H

Hey PFMD!
Though travel might be an issue, depending on where you are in Canada, I can assure you that NIH trials are open to folks from all over the world. There's no charge for their screenings or treatment; you typically pay for your own travel and then, of course, bear the cost of follow-up with your local physician.

Here's the NIH page on visa info. I note a specific section for Canadian patients on that page:



Aside from NIH, the maker of Promacta, Glaxo Smith Kline, is recruiting patients in Canada for this trial.

Of course, all that's a bit premature until you know whether your Dad actually has MDS -- and has MDS that needs to be treated.

I'm glad to hear you're with a specialist. I listened in on a group phone call with Dr. Karen Yee at Princess Margaret Hospital in Toronto. She was terrific!

Good luck to you and your Dad!

Greg

Hi,
We are seeing Dr. L Larrat @ U of Alberta Hospital. She is the division director as well. I will look into the NIH options after the BMB is done.

Thank you so much!
God bless

[pray for my dad]

Originally Posted by kgtuck

Wanted to post a reply re: drug treatment, Dacogen, being close in age to your dad and both of us having no other significant health problems. I do want to mention one thing about the treatment, if he, in fact, is prescribed one of the demethylating drugs, be patient. The drug may take anywhere from 3-6 months or sometimes longer to improve the symptoms, and there may be transfusions, etc. to go through during those months, but like others have mentioned on this site, just take each day at a time and you'll get through those first few months and be prepared to get alot of rest!! In my case and many others the numbers will jump up and down during those months. For me platelets, white cells, and hemoglobin were all low to start out. After 3 months, all began jumping higher and higher and I've been stable for almost 3 years now (with monthly treatments and independent of transfusions). Looking back, being scared to death, was my worst problem! Just take it easy and be patient!! Best of luck for your dad.

So glad to hear that you are successful with the med you are taking. I've seen a lot of the no response stories we really need to hear more of the positives!!

Thanks so much for your encouragement!!

[pray for my dad]

Originally Posted by Sally C

May I add to what Greg said - the first NIH trials with Promacta were with their Aplastic Anemia patients. They had such good luck with platelets and red cells that they decided to give it a try with their MDS patients. But whatever the disease, they are on the cutting edge - and as Greg said - all expenses at NIH are free to the patient.
God Bless,
Sally

Thanks for your info!!!

God bless you as well!!

[pray for my dad]

Thank you ALL so much!!!

I have got a lot of the info from this forum. I will come back to update this post when my dad has any new blood work done and certainly, when the BMB results come up!!!

Thank you and God bless!!!

[Sally C]

Originally Posted by Sally C

May I add to what Greg said - the first NIH trials with Promacta were with their Aplastic Anemia patients. They had such good luck with platelets and red cells that they decided to give it a try with their MDS patients. But whatever the disease, they are on the cutting edge - and as Greg said - all expenses at NIH are free to the patient.
God Bless,
Sally

Hello again,
I need to clarify something in my post. When I said "all expenses at NIH are free to the patient", I meant medical expenses. Hotel, food, etc. are not covered.