In need of an MDS education & emotional support

[PeppersMommy]

Hi. I am the daughter of a wonderful 75 year old man who has been the rock and foundation of our family. He has lived a quiet and selfless life providing for not only his family but also his extended family and several friends that have been in need along the way.

My Dad worked in the construction industry (mainly concrete) and has ALWAYS been a very healthy and strong man. However, 4 years ago he began having bladder issues (small tumors, which were not cancer). Then, almost 2 years ago came the diagnosis of MDS. According to my Mother, his Oncologist was cold and to the point...... "you have 3 years tops to live if the chemo doesn’t kill the MDS". To this date, the bedside attitude has not changed. Both of my parents are very kind people and will always defer to what a doctor has to say...... I on the other hand believe healing should be body, Mind, and spirit. I would love to change doctors but am limited by my parents HMO health insurance.

My Dads condition is getting increasingly worse. He began Vidaza injections last year. He has had approximately 4 treatments of 5 (100 mcg) shots. His need for transfusions is now at every 2 weeks. His quality of life in between the 2 weeks is poor (no appetite, and no energy). He loves to garden; growing tomatoes, apples, carrots, etc. He has always had a garden since I was a young child; however, he can no longer even water his yard.

His last transfusion was last Tuesday given to him via a hospital ER visit because we noticed he was not aware of his surroundings and had trouble following a conversation. A blood test showed his hemoglobin was at 4.7 and his platelets were at 3000. This isn’t the lowest it’s been. Almost 3 months prior he walked into the hospital.....on his own 2 feet..... with a hemoglobin of 3.5. Like I said, he has always been a very, very strong man.

This morning he woke up with a tennis ball sized bruise on his right knee. He had not fallen or bumped into anything that may have caused this. We took him to his primary dr. who indicated that his platelets had pooled in his knee. She also told my Dad that this type of pooling could also occur in his stomach and possibly his brain. This strong man I have had all my life is fading away in front of my eyes. I feel so helpless. He seems to be losing hope with each new turn that MDS brings his way.

I refuse to give up! I am asking for so guidance form this community of kindred spirits. Please educate me as to what I need to do first, second, third and so on. I will first be looking into changing my parents insurance to a PPO in October during their open enrollment period; however, until then I need to educate myself as much as possible.

Thank you in advance for any information and/or supportive stories that come our way.

[dfantle]

Hello, I have AA, not MDS, so may be wrong here, but from the counts you gave it seems that he may be needing transfusions and lab checks much more frequently than he's getting them. For 9 months, until this past March, I was getting 1 unit of blood weekly, platelets every 2-4 days and labs 2-4 times a week. My team set transfusion thresholds of 10k for platelets and 25-26 for my hematocrit (which seems to be close to 8.5-9 for HGB.

I truly was at my clinic 5-7 days/week over that 9 month period. I had a treatment end march Which has reduced that a bit. However because I'm just starting to see some improved blood counts my team still has me come in for labs 2x a week.

How often are your dads doctors checking his blood counts?

Best,

[triumphe64]

These people are very helpful.

http://www.aamds.org/

Contact the patient educator at

http://www.aamds.org/support-and-com...tient-educator

She will be of great help.

I also suggest getting a second opinion from a doctor specializing in bone marrow failure at a medical school/teaching hospital.

[Neil Cuadra]

PeppersMommy,

I'm very sorry that you, your Dad, and the rest of your family are having to go through this ordeal. Your Dad is used to a better quality of life, and clearly deserves it if it's at all possible to get his condition under control.

Good for you in educating yourself about this disease and reaching out to those who have been there before you.

I can't help but think that these sentences from your message are strongly related:

Originally Posted by PeppersMommy

To this date, the bedside attitude has not changed. Both of my parents are very kind people and will always defer to what a doctor has to say.

...

He seems to be losing hope with each new turn that MDS brings his way.

It's not a surprise that your parents, from the generation that often treat a doctor's word as gospel, are taking their cues from this pessimistic physician. Even if the doctor's assessments are in fact realistic, giving patients so little encouragement or hope for success is so unfortunate. Doctors should treat the patient, not just the disease. Switching physicians can solve this problem, as you've realized, but make sure your Dad knows about this plan; he may have formed an attachment to this doctor, despite the doctor's poor bedside manner, that will make a transition to another doctor harder than you expect. I'm not saying that you shouldn't try to get him insurance that will let him change to a better doctor, just that you ought to make sure he's on board with your plan.

In the meantime, are you available to go to their appointments with them? If so you can set a more positive tone, ask questions, and afterwards explain what's going on to your parents in terms they'll understand. Your role is critically important since your parents are very likely to trust your advice as well as the doctor's advice. Your being there to provide emotional support is worth its weight in gold.

Keep in mind that Vidaza can knock people back but then begin to kick in after repeated cycles. The doctor can quote statistics about outcomes for other patients but the truth is that nobody knows for certain what will happen in a particular case. That's frightening in a way, and there aren't many treatment choices for a 75-year-old, but the fact remains that there's always a chance of success and a reason for hope.

One last suggestion: Since your Dad loves to garden but can't manage it himself at the moment, he might like to talk about the subject anyway. What if you planted some vegetables yourself or tended his garden for him, and talked with him about it regularly? You'd be a gardening team: he directs the action, you carry it out.

[PeppersMommy]

Originally Posted by Neil Cuadra

PeppersMommy,

I'm very sorry that you, your Dad, and the rest of your family are having to go through this ordeal. Your Dad is used to a better quality of life, and clearly deserves it if it's at all possible to get his condition under control.

Good for you in educating yourself about this disease and reaching out to those who have been there before you.

I can't help but think that these sentences from your message are strongly related:

It's not a surprise that your parents, from the generation that often treat a doctor's word as gospel, are taking their cues from this pessimistic physician. Even if the doctor's assessments are in fact realistic, giving patients so little encouragement or hope for success is so unfortunate. Doctors should treat the patient, not just the disease. Switching physicians can solve this problem, as you've realized, but make sure your Dad knows about this plan; he may have formed an attachment to this doctor, despite the doctor's poor bedside manner, that will make a transition to another doctor harder than you expect. I'm not saying that you shouldn't try to get him insurance that will let him change to a better doctor, just that you ought to make sure he's on board with your plan.

In the meantime, are you available to go to their appointments with them? If so you can set a more positive tone, ask questions, and afterwards explain what's going on to your parents in terms they'll understand. Your role is critically important since your parents are very likely to trust your advice as well as the doctor's advice. Your being there to provide emotional support is worth its weight in gold.

Keep in mind that Vidaza can knock people back but then begin to kick in after repeated cycles. The doctor can quote statistics about outcomes for other patients but the truth is that nobody knows for certain what will happen in a particular case. That's frightening in a way, and there aren't many treatment choices for a 75-year-old, but the fact remains that there's always a chance of success and a reason for hope.

One last suggestion: Since your Dad loves to garden but can't manage it himself at the moment, he might like to talk about the subject anyway. What if you planted some vegetables yourself or tended his garden for him, and talked with him about it regularly? You'd be a gardening team: he directs the action, you carry it out.

Neil,

Thank you! Yes, I am available to go with them to their appointments. In the past my participation, although appreciated, was declined. Now that things are getting very serious they are open to my helping them. My mother has had diabetes for several years and she isnt taking care if herself due to the stress of my dads condition.

Also, your suggestions about gardening are perfect! I did this with him as a child so this will be a wonderful added memory for me.

Thanks again!

Leslie - daughter of a 75 year old Dad - dx MDS 2010

[PeppersMommy]

Originally Posted by dfantle

Hello, I have AA, not MDS, so may be wrong here, but from the counts you gave it seems that he may be needing transfusions and lab checks much more frequently than he's getting them. For 9 months, until this past March, I was getting 1 unit of blood weekly, platelets every 2-4 days and labs 2-4 times a week. My team set transfusion thresholds of 10k for platelets and 25-26 for my hematocrit (which seems to be close to 8.5-9 for HGB.

I truly was at my clinic 5-7 days/week over that 9 month period. I had a treatment end march Which has reduced that a bit. However because I'm just starting to see some improved blood counts my team still has me come in for labs 2x a week.

How often are your dads doctors checking his blood counts?

Best,

Dena,

As of last week my Dads hemo/onc was scheduling blood tests every 2 weeks. In 1 month he was in the ER twice once with hb 6.0 and then the 4.7 hb. I would have assumed the dr would have changed to weekly but he didnt make the change until yesterday when my parents, armed with demands if mine, changed the testi g schedule. We also had ti demand that a blood test be giveb after every transfusion so we know where his count is as he would never order one.

There is so much to know and ut seems his dr answers so little thats why Im so thankful I found this site!!!!!!!

[PeppersMommy]

Originally Posted by triumphe64

These people are very helpful.

http://www.aamds.org/

Contact the patient educator at

http://www.aamds.org/support-and-com...tient-educator

She will be of great help.

I also suggest getting a second opinion from a doctor specializing in bone marrow failure at a medical school/teaching hospital.

Triumphe64,

Thank you so much for theses reference sites. I feel so hrlpless but have always felt that knowledge is power so this will alleviate allot of my anxiety & fear as well as my parents.

Ive tried to get a 2nd opinion but their HMO is so restricted but Im hoping to change their insurance in the Fall.

Thanks again!

[Neil Cuadra]

When you talk to the AA&MDSIF, be sure to ask for their free MDS information packet. You could get one for your parents too.

You can also download the MDS Patient Handbook from the MDS Foundation.

[donna j.]

Dear PeppersMommy,

Has your father been assessed by a Transplant Doctor? Many hemotologists that have been in practice for a while, have little knowledge and no experience regarding transplants. I have read that persons up to the age of early 80's have now received transplants.( I don't know their conditions or the outcomes.) Prior to my transplant, I received 3 rounds of Vidaza, which knocked me to the ground. I upped my CBC checks to 3x a week, and my transfusions for PRBC and Platelets were increased to every 7-14 days, with counts falling lower than before. (6.9 for Hemo and below 5 for platelets). My immune system also dropped, and I had strong reaction to the Vidaza: vomiting, confusion, loss of appetite, and pneumonia.
It was not explained to me that this was possible during the treatment. I felt it was not helping and leaving me less healthy. My transplant dr. said she had hoped to have 4 rounds prior to the transplant,
My BMB did not show any improvements after the Vidaza.

Has your father's biopsies shown any improvement since his Vidaza regime?

Unfortunately, these are very complicated diseases with new information available ongoing . Drs. do not seem to feel obligated to update themselves or to inform and educate us along the way. Thank heaven for sites like this.

Although I am at fault myself, a recommendation I frequently see, is to also see a dr who specializes in MDS.

I hope you and your parents seek and get further assistance regarding your father's health, it just sounds very "old school" to me.

Donna

[Birgitta-A]

Dear PeppersMommy,
You have already got so much advise that I will only give you some info. Your father's platelets were 3000 - as you have understood much too low. Platelets make the blood clot and the tennis ball sized bruise on his right knee depends on the low platelets. It is not platelets but blood that has pooled in the knee. When my platelets are low I have had bleeding in the joints too - very painful.

Don't they give your father platelet transfusion - as you have seen from other posts he should have platelet transfusions to avoid serious bleeding for example in the brain?

You don't write anything about his white blood cells. How are they?
Kind regards
Birgitta-A
73 yo, dx MDS Interm-1 2006. Transfusion dependent from diagnos. Have received 142 units of blood. Started Thalidomide + Prednisone 2010 with good results.

[Rich D]

Your doc sounds like a total mess. Your dad should have a CBC at least each week. His levels should NEVER be where they were if the doc knows, or is paying any attention at all. I've gone to three docs, one said I had MDS, the next said NO, and the third more or less agree with the first. I checked each docs background, Florida and most states have a professional license database, and was able to find the one with the best overall credentials. I selected him, and I'm just finishing my 3rd session of Vidaza. Had a total of three 2 bag blood transfusions in the first, and the beginning of the second. Hemoglobin now is 9.9, was 10.00, and 10:01. If I go below 8.0, he orders a transfusion.

Anyway, please see if you can find another doc, or at least another opinion on the treatment and diagnosis on your dad. There actually are some docs who know, and more impotently care about their patients.



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