In search of an MDS education

[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.

[milliken2]

PeppersM:
Our hema/onc tells us that it takes between 4 and 6 sessions to see if either Vidaza or Dacigen is working. I understand what you mean about having a vital and eergetic person - then to have someone unable to do a lot of things he was used to. The same goes for my husband. Check out the following link - and you will see how active and able he used to be.
http://1789-loghouse-mcconnellsmill.com/index.html

Regarding his appetite - ask the Dr. to prescribe him some marinol. I know it has helped Earl - he is FAR from his usual self, but at least his appetite is better, and the nausea is also less.

Too - if you are unhappy with the Dr. - check out other ones in your area. I understand what you mean about him not wanting to upset the Doc - but the bedside manner, and the degree of care and understanding a physician gives is as important as what he prescribes. I know my husbands PCP was not at all familiar with MDS - and I had to educate him with what I knew - and that meant taking a lot of information to him that I got from the AA/MDS Foundation. And he seemed genunely appreciative.

Also - you said he used to like to garden. So did Earl. Of course we have scaled down LOTS - but we have 2 large urns/pots that we have veggies planted in right outside our kitchen door - and at least he will be able to get a fresh tomato or pepper when they get mature - and he doesn't have to walk far just to look at them. This might improve your father's spirits a bit.

I wish you all the luck, and I hope things turn around for your Dad.

Beth

[Marlene]

I really cannot speak to the MDS but I'm sorry to hear about the doctor's poor bedside manner. Is there not another hematologist in his HMO? I think it's very important for your healthcare team to provide a reasonable level of hope and offer solutions.

Is he off all treatment except transfusions? Can you go to his appointments with him to address specific issues with the doctor. We kept copies of all lab results pre-diagnosis and post. This way you can see trends, see exactly what they tested for and see the results first hand.

A second opinion is in order and I would not hesitate to get one even if you have to go out of network for it. I think this doctor made up his mind early on that your Dad was not going to improve and is not giving him the full attention he's entitled to.

[cathybee1]

Hope this is not too far off topic, but I really would like to second Marlene's suggestion to consider going out of your HMO network now for a second opinion. Especially since you indicate your dad seems to be losing hope in his current treatment.

It is sometimes difficult to convince family members to get a second opinion, especially when they feel crummy already. My mother did not have MDS, but had serious fatigue issues and anemia. She too did not want to "upset" her doctor but I finally convinced her to get a second opinion outside the HMO at a university medical center. The consulting physician recommended additional testing and follow up. The cost of the second opinion exam was $250 out of pocket. Within a week, the HMO had scheduled all the tests the consulting physician had recommended, plus assigned her to a team of specialists. It turned out to be a very good investment in my mom's health care, plus gave the family peace of mind.

[PeppersMommy]

Originally Posted by milliken2

PeppersM:
Our hema/onc tells us that it takes between 4 and 6 sessions to see if either Vidaza or Dacigen is working. I understand what you mean about having a vital and eergetic person - then to have someone unable to do a lot of things he was used to. The same goes for my husband. Check out the following link - and you will see how active and able he used to be.
http://1789-loghouse-mcconnellsmill.com/index.html

Regarding his appetite - ask the Dr. to prescribe him some marinol. I know it has helped Earl - he is FAR from his usual self, but at least his appetite is better, and the nausea is also less.

Too - if you are unhappy with the Dr. - check out other ones in your area. I understand what you mean about him not wanting to upset the Doc - but the bedside manner, and the degree of care and understanding a physician gives is as important as what he prescribes. I know my husbands PCP was not at all familiar with MDS - and I had to educate him with what I knew - and that meant taking a lot of information to him that I got from the AA/MDS Foundation. And he seemed genunely appreciative.

Also - you said he used to like to garden. So did Earl. Of course we have scaled down LOTS - but we have 2 large urns/pots that we have veggies planted in right outside our kitchen door - and at least he will be able to get a fresh tomato or pepper when they get mature - and he doesn't have to walk far just to look at them. This might improve your father's spirits a bit.

I wish you all the luck, and I hope things turn around for your Dad.

Beth

Beth,

Thanks for sharing......it truly is powerful to connect with others who are dealing with similar situations.

Your suggestion about the large pot closer to the house for gardening is genius! My husband and I will be getting on that this weekend.

My very best wishes for you & your family.

[PeppersMommy]

Originally Posted by Marlene

I really cannot speak to the MDS but I'm sorry to hear about the doctor's poor bedside manner. Is there not another hematologist in his HMO? I think it's very important for your healthcare team to provide a reasonable level of hope and offer solutions.

Is he off all treatment except transfusions? Can you go to his appointments with him to address specific issues with the doctor. We kept copies of all lab results pre-diagnosis and post. This way you can see trends, see exactly what they tested for and see the results first hand.

A second opinion is in order and I would not hesitate to get one even if you have to go out of network for it. I think this doctor made up his mind early on that your Dad was not going to improve and is not giving him the full attention he's entitled to.

Marlene,

I agree! I have to take baby steps with my father, which is paying off. He has invited me to attend his next appointment on Wednesday so that I can discuss my MDS research with his hemo/onc. This is HUGE! My next challenge is to get him comfortable with getting a 2nd opinion. All of the support I have been given here has given me the strength to keep working towards this for him.

Best wishes!

[PeppersMommy]

Originally Posted by cathybee1

Hope this is not too far off topic, but I really would like to second Marlene's suggestion to consider going out of your HMO network now for a second opinion. Especially since you indicate your dad seems to be losing hope in his current treatment.

It is sometimes difficult to convince family members to get a second opinion, especially when they feel crummy already. My mother did not have MDS, but had serious fatigue issues and anemia. She too did not want to "upset" her doctor but I finally convinced her to get a second opinion outside the HMO at a university medical center. The consulting physician recommended additional testing and follow up. The cost of the second opinion exam was $250 out of pocket. Within a week, the HMO had scheduled all the tests the consulting physician had recommended, plus assigned her to a team of specialists. It turned out to be a very good investment in my mom's health care, plus gave the family peace of mind.

Cathybee1,

What an amazing return on that investment! Im so happy yours turned out well. Im hoping & praying that when my Dad is ready to agree to his 2nd it results in a similarly good outcome. He struggles with giving up control to his children as he doesnt want to be a burden......so far from the truth!

Thank you for sharing......Best wishes for you & your family!