Father not doing well.....but some questions

[run4peach1]

My Dad, 79 years old, was diagnosed with MDS about 14 months ago. Vidaza worked for a while, on and off. To get to the point, he had his third bout with pneumonia recently, was in the hospital 10 days, then a transitional care unit for the last 20. He was scheduled to go home tomorrow, but the past couple of days he took a turn for the worst.

Today, they took him back to the hospital. He is pretty much totally out of it. He just lays there. He has lost at least 30 pounds. He was doing much better until the last 3 or 4 days. The family doctor said it's his disease, and even though his HBG is 9.8 (8 days after a transfusion) and his counts are ok, it's a symptom of the disease. He kind of said it's bad that he is that weak with that good of a count. I kind of don't buy it.

My Dad was fine 6 weeks ago. I understand he is 79 and a lot can happen, but has anyone expeienced such a dropoff so quickly, especially with his counts so good? I think it might be something else, smoething unrelated to the MDS.

Anyhow, he is back in the hospital so that is the best place for him right now. The doctor also said he probably won't get any better and will probably get worse. I dunno, but given what I have learned on this site, I am not as pessimistic. His fever did go up to 100.5 today. I want them to check for some other things before we decide it's going to get worse. Could we be missing something?

He did get a shot of aranesp this week at my request. Could this cause such weakness? Could his potassium be low, as it was before, and they are just missing it? He hardly eats anything, so maybe it can be attributed to his nutrition?

I just wanted to see if anyone has any insight. We're hanging in there. I appreciate all your Prayers. May everyone have a Blessed and Merry Christmas. I am Praying for everyone.

[squirrellypoo]

What are the rest of his counts like? I had high hb once but very low neutrophils and it made me feel super drained like my hb should've been about 7. The drs told me the other counts can influence energy levels as much as hb can sometimes.

[run4peach1]

for sepsis in the hospital. I know, very serious. The first blood culture came back negative for it, but the have to check further I guess. I am Praying for everyone........

[Birgitta-A]

Hi run4peach1,
“Early, aggressive treatment boosts your chances of surviving sepsis … Treatment with antibiotics begins immediately — even before the infectious agent is identified”.
http://www.mayoclinic.com/health/sep...ents-and-drugs

Since I had neutropenic fever Sept 2007 I control my temperature twice a day. Then I follow my neutrophils carefully and when they are low I actually go to the hospital every day till they are more than 1.5. When I tried drugs for iron overload (not Desferal) my neutrophils decreased and I was taking Neupogen every day instead of 2 injections/week.

Hope they have managed to select antibiotics that will help your father!
Kind regards
Birgitta-A

[run4peach1]

of antibiotics as soon as he got to the hospital. They aren't 100% certain it's sepsis (I guess it could be some other infection) but if it is, they have already started treatment. I really can't say how early they started overall because I can't really be sure when the infection started.

Everyone is in my Prayers, as always.

[Birgitta-A]

Hi run4peach1,
Very good that your father got treatment as soon as they had got the blood and other tests and x-ray of the lungs but before they found the agent that caused the infection!

They never found the cause of my neutropenic fever but as soon as I was treated with ZINACEF (cefuroxime) in infusion I recovered.

We do hope that your father has got the best drugs and will recover!
Kind regards
Birgitta-A

[run4peach1]

but a staph infection. Responding well to the antibiotics so far. A little better today, but we have to keep on him about eating and gaining some weight back.

I hope everyone had a Merry Christmas and will have a Happy New Year. Continuing to pray for everyone.............

[Birgitta-A]

Hi run4peach1,
Wonderful that your father is recovering ! Do keep an eye on his neutrophils in the future. I think one of our members, Ed Campbell, has got some severe complication when he got Vidaza and had very low neutrophils.

Best possible health to everyone in 2010!
Kind regards
Birgitta-A

[run4peach1]

I just Pray that his counts can stay up a bit on their own. I know they can't do much of anything to really attack the MDS until he gets stronger.

I am keeping you all in my Prayers.

[ann]

You and your father are in my prayers. I hope that they have got the right antibotics going now. Isn't Brigitta wonderful. I appreciate reading everyitng she writes. She is so concerned and considerate of everyone on Marrowforums.
Please keep us posted on your father.
ann

[run4peach1]

and very knowledgeable. I am keeping you all in my Prayers as always.

[run4peach1]

depression? My Dad is down in the dumps. He has been away from home for at least 5 weeks. He wants to come home but it's just not possible right now. I did request that the doctor give him something for both depression and his appitite.

I am keeping everyone in my Prayers, as always.

[Birgitta-A]

Hi ann and run4peach1,
Thank you ann for the kind words - you know when I search the net for info I learn a lot myself.

You know run4peach1 MDS patients should be very careful and always control if the food or the drugs they are taking could decrease their platelets or increase bleeding. Of cause we have to take drugs like antibiotics when we need them even if some patient get decreased platelets from that drug.

When I was dx May 2006 my platelet count was 65. Since then I have looked at the warning list from patients with a bleeding disease due to low platelets and my platelets have decreased very slowly to about 40 without bleeding symptoms.

Pain medications are specially dangerous but drugs for depression could be bad too. Try to control the adverse reactions of the drug that your father’s doctor eventually will give him.
http://www.pdsa.org/itp-information/itp-warnings.html

Hope your father's fighting spirit will increase!
Kind regards
Birgitta-A

[run4peach1]

Vancomycin, which is on that list, but I guess it's a pretty serious antibiotic and they need to get rid of the infection first and foremost. His platelets are low, and he may be bleeding from his bladder, which I am sure isn't good.

The pulmonary doctor just plain said that if he won't get better unless he gets some nutrition. My Dad simply isn't eating well, so they are going to try a feeding tube in his stomach, hopefully just for a while.

It's a real tough time for us. Please Pray for him as I am Praying for everyone.

[Birgitta-A]

Hi run4peach1,
Yes of cause your father needs Vancomycin.

Nutrition is a very serious problem for most cancer patients. It is difficult to gain weight when you feel ill.

When I got the dx myelofibrosis during 15 months I read that the patients often got very thin so I decided to keep the weight I had at dx (though it is a little too high). I control my weigt every day and eat more if I am loosing weight for example when I get my Desferal infusion for 4 days with transfusion.

Very good that your father will get a feeding tube so he will receive everything he needs ! Perhaps he can try nutritional drinks and find some that he can tolerate. I hope this link is OK - there are many kinds of nutritional drinks.
http://www.nutritionincancer.co.uk/en/forti-range.html
Kind regards
Birgitta-A

[run4peach1]

I never realized how important nutrition is. I just figured eating isn't going to cure him..........and I realize it's not, but it should help him in other ways. Trouble is he has to have his food pureed right now. I guess his swallowing muscle isn't very strong because of his illness and age, and they worry that he is aspirating his food into his lung instead of going into his stomach, which in turn can cause the pneumonia to come back.

Today might have been a little better of a day, but it's been such a long time........approaching 6 weeks that he hasn't been home. I know we have to keep fighting. If he could just kick this pneumonia for good, we might be able to get him back on track.

Everyone is in my Prayers, as always.........

[ann]

This time of year is hard to fight depression when someone has been away from home for so long. We will keep you both in our prayers. You are such a wonderful daughter and I know your father is very proud of you. God bless you and keep your spirits up. This disease (that I had never heard of 7 months ago) is still a big unknown to me. I read and read and still don't understand what could cause someone to have it. No one that we know has even heard of it. Just have to keep our spirits up and pray.

[run4peach1]

for your kind words. Yes, MDS is a disease that not many people have heard of before. My Dad is much better, in fact yesterday they were talking about sending him to a facility for some rehab. Then today he complained of some back pain and his pulse really went up (above 150). It calmed back down and he was much better this evening.

Best thing I can tell you is to take it a day at a time. That, and most importantly, keep Praying. Everyone is in my Prayers, as always.

[run4peach1]

A recent BMB revealed that my father has 15% blasts. Due to this and some other factors (including 1% blasts in his peripheral blood) they have diagnosed him with leukemia. Now we have to make some decisions.

The NP I just spoke to said she wasn't hopeful that any treatment would be tolerated and/or be successful for my Dad. We will meet with the hematologist on Monday. She also said that if we wanted to try treatment (I mentioned mylotarg) she said they would honor our wishes. I know that leukemia that comes from MDS is harder to treat. I know sometimes the treatment can be worse than the disease, although I hear mylotarg doesn't have as strong of side effects as some of the others. If my father is just going to lay in bed anyhow, I wonder if it isn't worth giving the chemo a try. I read it does have some success.

Anyone have any experiences with mylotarg, or another chemo for leukemia? I know my Dad wants to come home, so I'm not sure if that would further complicate the treatment option.

I appreciate any insight. I am Praying for you all....

[Birgitta-A]

Dear run4peach4,
Too bad that your father's MDS has transformed to AML. I think you are right when you choose a monoclonal antibody drug like Mylotarg (gemtuzumab) instead of intensive chemo.
http://www.ncbi.nlm.nih.gov/pubmed/2...m&ordinalpos=5
Kind regards
Birgitta-A

[kvichi]

My dad's MDS progressed to AMl about a year and a half ago. He was told he had 30 days to live. 18 months later he is still fighting. He was hospitalized for pnemonia aobut 5 months ago and again they told him there was little hope of any treatment working and he probably wouldn't be around for the holidays. Well, he is still with us and still doing fairly well. He has opted for chemo and just finished his 4th round. I have learned that doctors are human, this disease is unpredictable and some people have an amazing desire to live. Hopefully your dad will find that desire and fight a little longer. Everyone responds so differently with this disease, but hopefully you will be given the gift of more time with you dad, as I have been given.

-Kim

[run4peach1]

your father is fighting!! Thank you for the hope. I imagine that the doctor will say he doesn't recommend the chemo because of his weakness. What kind is your father receiving? Is it mylotarg? How does it effect him?

Thanks to everyone that contributes to this wonderful site. You are in my Prayers as always.

[run4peach1]

that my father passed away this morning. I find comfort in knowing that he is in a better place. While I mourn, I keep in mind that we are spared from making some very difficult decisions. My father would not have wanted to live the way he had become of the past few days; and while I miss him deeply, I am at peace knowing he is not suffering. For those of you that are children of the 1980's, you may be familiar with a little tune from Mike and the Mechanics known as "The Living Years." For those of you that know the lyrics, I'm thankful that I was there that morning when my father passed away.

For those of you that don't know, my father was diagnosed with MDS in October 2008, six years after being diagnosed with MPD (myeloproliferative disease) in which his main problem was making too many platelets. Six years after being on hydrea (a chemotherapeutic drug that was being used for is myelosupressive side effects) he shared the dual diagnosis of MPD/MDS. Eventually, the MDS won out. It was less than a week ago that they informed us that he has progressed to AML. I have read that there are some theories that the hydrea (and other previous chemotherapy) are linked to MDS. Of course I have nothing to prove that, and nothing to complain about. The 3 million platelets my Dad was making could have caused him to stroke. It was a double edged sword, and the doctor did what he thought was best.

While it has been a long road since diagnosis (and I know it's not nearly as long as some contributors on this forum) but I am at peace knowing my father had 78 good years. Even during the 15 months since his diagnosis, we had plenty of good times. The last two months were the hardest.

Perhaps that is why I find myself at such peace. I know I'll cry many more tears; but I cried plenty during his illness. I am comforted by the fact that I did not hide during his illness. I did my best to keep him informed, to ingrain the seriousness yet temper it with hope. I am very lucky to have been able to see my father the vast majority of days the past 40 years. I'm thankful for the example he set, and I will always be proud to say he is my father. I know we'll see him again.

I hope that my father's passing will in no way discourage anyone fighting this disease. IT SHOULD NOT. There is help out there. The medical community has made great strides and will continue to do so. Be certain that it will be a fight; be equally certain that you can win.

Again, I want to thank the founders and/or contributors to this wonderful forum. It has been a great source of knowledge and comfort to me. I will continue to check in from time to time. Feel free to pick my brain a little if you like as I'll be happy to share anything I have learned.

Keep fighting the good fight!! As always, you are all in my Prayers.

[Gloria J]

Dear Run4Peach1,

I am so sorry to hear of your father's passing. He truly fought the good fight, and deserves the peace he has found.

Please know that any comfort you derived from this forum is dwarfed by the contributions you made in terms of experiences that you shared. I know personally that it helps me greatly to know that others are going through what I am, and understand and emphasize.

Take a deep breath now, and rest in the knowledge that you were a good daughter to him, a strong advocate, and a comfort all of his years.

Stay strong, and smile through your tears.

[Ruth Cuadra]

Dear Run4Peach1,

On behalf of Marrowforums, I offer our condolences to you and your family on your father's death. You've written very eloquently about the difficulty of letting a loved one go rather than subject them to additional treatments that would likely not yield improved quality of life. Your father was a lucky man to have you advocating for him, seeking the best and latest information that might help him, and most importantly, spending time with him. His experience with MDS--and yours as a son and caregiver--will be of great benefit to those who come to this site looking for real-life information and advice.

With sympathy,
Ruth Cuadra