All Counts Are Falling Fast

[billyb]

Bob, see if your differential is on your cbc, sometimes it is... sometimes they dont count on every blood pull, a differential will break out your white blood cells and stuff. Even though your counts are low, I do see some good from the point that there a stable low, because there about at the same place when you posted on July 1st. Bob try to find positives where u can, it can help your psyche tremendously. Try not to freak out about the blasts, the Vidaza was keeping them out of you blood stream. Hopefully John Hopkins can come up with a good treatment plan. Remember just because someone else didnt see results, dosent mean you wont. Keeping ya'll in our prayers

[Birgitta-A]

Hi Bob,
Very positive with John Hopkins!

You know I started treatment with Thalidomide + Prednisone 2010 when I had to have blood txs every week and my dysfunctional platelets were 22. My HGB very slowly increased to 13.7 and my platelets to 112. I had to continue with Neupogen twice a week the firsts years.

Feb 2013 I had to start txs again and this time I have much more hemolysis than I had before. We tried to increase Thalidomide from 4 caps á 50 mg/week to 50 mg/day + Prednisone 30 mg/day (tapered during 3 months) without positive effect on the HGB. The platelets have increased to about 180 (very high for me).

Last week I started with Revlimid 5 mg/day + Prednisone 30 mg/day. Then I take Neupogen once a week. I don't have the del5q chromosome aberration.

It is not common that MDS patients get Prednisone when they start taking Revlimid but since both patients with Myelofibrosis and Myeloma always combine Revlimid with steroids for better response I asked my doctor if I could try that.

It is too early to know if I will respond - in fact I have read that non del5q patients without any chromosome aberrations will respond much better than patients with other chromosome aberrations (I have del12p and X-).

Hope they will find a treatment that will work for you!
Kind regards
Birgitta-A

[PattiDean]

Originally Posted by MagicBob

Patti, my BMB results were quite disappointing, as my Oncologist informed us that MDS is worsening, and the transfusions aren't raising my Red Cells and Platelets. Also, for the first time Blasts have shown up (5-10 per cent)
Current CBC numbers: WBC 0.8, HGB 8.0, PLT 15, ANC 0.2

I ask what is the next step, his response "I would try Revlimid, but you are not eligible as your Platelets are too low". I then searched articles about the drug, and here is what I found: Revlimid Trial In Leukemia Halted – No Immediate Impact On Drug’s Approved Use In MDS Expected - mdsbeacon July 19, 2012.

August 5th, I have an appointment with my MDS Specialist at Johns Hopkins, and hopefully he has magic.

Our Love and Prayers,

Dru and Bob MagicBob

Bob and Dru, so sad to read your post. August 5th has to feel so very far away right now. How far is Johns Hopkins from your home?

Dean had been on Revlimid last year, but unfortunately he had to be taken off of it. Thankfully his body began to respond to Dacogen, and he did good until last month, when like you, all his counts began to drop.

We have an appointment with Moffitt Cancer Center in Tampa on Tuesday. Dean wants to have hope that they will be able to help him, like you he hopes they have some "magic". Dean's oncologist in Clearwater basically said he didn't have any more options, which is why he referred Dean to Moffitt.

Dean's blasts are now 15%, which is what they were when he first found out he had MDS, but they had dropped below 5% while on Dacogen. On Monday we receive the chromosome report, before going to Moffitt on Tuesday.

Dean's counts were fairly stable on Thursday, they increased after his transfusions last Friday. In addition to the transfusion of PRBC and platelets, Dean has been receiving an injection of Procrit over the last three weeks.

WBC 1.9
ANC 0.5
RBC 2.97
Hgb 9.7
PLT 21

Dean will have labs again on Monday, praying they haven't dropped. Like Dean, your counts are real low, even lower, but sometimes still not low enough for transfusions. They wait until Dean's platelets are 10 or below, and his hemoglobin below 8.0, by then Dean doesn't even have enough energy to stand up.

Dean is so very weak and short of breath, he also isn't eating very much, now weighs less than 160 lbs. He is 6 feet tall, and his normal weight was always around 180. He has bruises up and down his arms.

This week Dean has been very down, he keeps telling me how afraid he is and how hard he has been fighting, he doesn't know if he has the strength to continue. I have been saying so many prayers that he will receive good news when we visit Moffitt, he needs that right now.

You both have gone through and are going through so very much with this disease. So many of our friends and family had never heard of it, and had no idea how awful it can be.

We will let you know what they tell us at Moffitt. Will you be having anymore blood work before your appointment at Johns Hopkins?

Bob, we will keep you and Dru in our thoughts and prayers down here. We also send you both our love and we will keep believing in "magic"!

Love, hugs, faith, hope and prayers always, Patti and Dean

[PattiDean]

Originally Posted by Birgitta-A

Hi Bob,
Very positive with John Hopkins!

You know I started treatment with Thalidomide + Prednisone 2010 when I had to have blood txs every week and my dysfunctional platelets were 22. My HGB very slowly increased to 13.7 and my platelets to 112. I had to continue with Neupogen twice a week the firsts years.

Feb 2013 I had to start txs again and this time I have much more hemolysis than I had before. We tried to increase Thalidomide from 4 caps á 50 mg/week to 50 mg/day + Prednisone 30 mg/day (tapered during 3 months) without positive effect on the HGB. The platelets have increased to about 180 (very high for me).

Last week I started with Revlimid 5 mg/day + Prednisone 30 mg/day. Then I take Neupogen once a week. I don't have the del5q chromosome aberration.

It is not common that MDS patients get Prednisone when they start taking Revlimid but since both patients with Myelofibrosis and Myeloma always combine Revlimid with steroids for better response I asked my doctor if I could try that.

It is too early to know if I will respond - in fact I have read that non del5q patients without any chromosome aberrations will respond much better than patients with other chromosome aberrations (I have del12p and X-).

Hope they will find a treatment that will work for you!
Kind regards
Birgitta-A

Thank you Birgitta. Your post gives us hope. When Dean was on Revlimid, he wasn't taking any other medications. He was only on it for two months, the end of last year, when his counts began to drop and his oncologist took him off of it.

You give us back the "hope" that we need right now. Thank you.

Love and hugs,

Patti and Dean

[MagicBob]

Originally Posted by Birgitta-A

Hi Bob,
Very positive with John Hopkins!

You know I started treatment with Thalidomide + Prednisone 2010 when I had to have blood txs every week and my dysfunctional platelets were 22. My HGB very slowly increased to 13.7 and my platelets to 112. I had to continue with Neupogen twice a week the firsts years.

Feb 2013 I had to start txs again and this time I have much more hemolysis than I had before. We tried to increase Thalidomide from 4 caps á 50 mg/week to 50 mg/day + Prednisone 30 mg/day (tapered during 3 months) without positive effect on the HGB. The platelets have increased to about 180 (very high for me).

Last week I started with Revlimid 5 mg/day + Prednisone 30 mg/day. Then I take Neupogen once a week. I don't have the del5q chromosome aberration.

It is not common that MDS patients get Prednisone when they start taking Revlimid but since both patients with Myelofibrosis and Myeloma always combine Revlimid with steroids for better response I asked my doctor if I could try that.

It is too early to know if I will respond - in fact I have read that non del5q patients without any chromosome aberrations will respond much better than patients with other chromosome aberrations (I have del12p and X-).

Hope they will find a treatment that will work for you!
Kind regards
Birgitta-A

Birgitta, thank you for the response, and wishing the treatment will be of great help for you. We just don't know what will work, and it is worth a try, nothing ventured, nothing gained.

Anxiously awaiting my appointment at Johns Hopkins Hospital, and wondering what I may learn from the MDS Specialist.

My very best, MagicBob

[MagicBob]

Originally Posted by PattiDean

Bob and Dru, so sad to read your post. August 5th has to feel so very far away right now. How far is Johns Hopkins from your home?

Dean had been on Revlimid last year, but unfortunately he had to be taken off of it. Thankfully his body began to respond to Dacogen, and he did good until last month, when like you, all his counts began to drop.

We have an appointment with Moffitt Cancer Center in Tampa on Tuesday. Dean wants to have hope that they will be able to help him, like you he hopes they have some "magic". Dean's oncologist in Clearwater basically said he didn't have any more options, which is why he referred Dean to Moffitt.

Dean's blasts are now 15%, which is what they were when he first found out he had MDS, but they had dropped below 5% while on Dacogen. On Monday we receive the chromosome report, before going to Moffitt on Tuesday.

Dean's counts were fairly stable on Thursday, they increased after his transfusions last Friday. In addition to the transfusion of PRBC and platelets, Dean has been receiving an injection of Procrit over the last three weeks.

WBC 1.9
ANC 0.5
RBC 2.97
Hgb 9.7
PLT 21

Dean will have labs again on Monday, praying they haven't dropped. Like Dean, your counts are real low, even lower, but sometimes still not low enough for transfusions. They wait until Dean's platelets are 10 or below, and his hemoglobin below 8.0, by then Dean doesn't even have enough energy to stand up.

Dean is so very weak and short of breath, he also isn't eating very much, now weighs less than 160 lbs. He is 6 feet tall, and his normal weight was always around 180. He has bruises up and down his arms.

This week Dean has been very down, he keeps telling me how afraid he is and how hard he has been fighting, he doesn't know if he has the strength to continue. I have been saying so many prayers that he will receive good news when we visit Moffitt, he needs that right now.

You both have gone through and are going through so very much with this disease. So many of our friends and family had never heard of it, and had no idea how awful it can be.

We will let you know what they tell us at Moffitt. Will you be having anymore blood work before your appointment at Johns Hopkins?


Bob, we will keep you and Dru in our thoughts and prayers down here. We also send you both our love and we will keep believing in "magic"!

Love, hugs, faith, hope and prayers always, Patti and Dean

Patti, we are happy that Dean is going to Moffitt, they have a great team that
specializes in MDS.

We pray that God removes Dean's fears and gives him the strength to face each day. When we are weak, and short of breath it does scare us, and like Dean our ages of 76 adds to our struggles.

Our drive to Johns Hopkins is a only a 90 minute drive; our daughter Beth will be arriving on Friday from Hartford, Ct. and will drive us to the hospital next Monday.

I am scheduled for a CBC on Wednesday and hoping the counts have improved to where I won't have the need for any transfusions.

Our very best and strong thoughts and prayers to you and Dean, and tell him that we need to hang in there together.

Dru and Bob

[PattiDean]

Originally Posted by MagicBob

Patti, we are happy that Dean is going to Moffitt, they have a great team that
specializes in MDS.

We pray that God removes Dean's fears and gives him the strength to face each day. When we are weak, and short of breath it does scare us, and like Dean our ages of 76 adds to our struggles.

Our drive to Johns Hopkins is a only a 90 minute drive; our daughter Beth will be arriving on Friday from Hartford, Ct. and will drive us to the hospital next Monday.

I am scheduled for a CBC on Wednesday and hoping the counts have improved to where I won't have the need for any transfusions.

Our very best and strong thoughts and prayers to you and Dean, and tell him that we need to hang in there together.

Dru and Bob

Hello Bob and Dru,

Thank you for your kindness, prayers and supportive words. Dean had his labs today, all counts went down since Thursday, but we expected as much. Because Dean has to go to Moffitt tomorrow, he won't get transfusions of PRBC and platelets until Wednesday and Procrit on Thursday.

Dean asked me today if I had heard from you, he feels comfort knowing that someone else understands what he is going through. He says sometimes MDS feels like a very lonely disease.

Dean keeps telling me he feels as though he has aged ten years since finding out he has MDS. He actually was doing very good for a few months, was strong and had a good appetite, the last two months have been the hardest since we first found out he was sick.

We will keep you and your family in our thoughts and prayers for your visit to Johns Hopkins on Monday. Hopefully you and Dean will both receive some welcome news, you both need it so very much.

Dean says he will hang in there with you Bob, you both have a 77th birthday to celebrate! What month were you born? Dean is February.

Love, hugs, faith, hope and prayers to you and Dru,

Patti and Dean

[MagicBob]

We have been thinking of you guys all day, and praying for the best.

I can't believe it but here is another match, (birthdays) mine is also in
February, the 2nd. (Groundhog Day). Tell Dean that the four of us need to start planning a 77th Birthday.

Remember, we can't stop making future plans and this will help keep us on positive track and thinking.

Our prayers, thoughts, cares and hope,

Dru and Bob

[PattiDean]

Originally Posted by MagicBob

We have been thinking of you guys all day, and praying for the best.

I can't believe it but here is another match, (birthdays) mine is also in
February, the 2nd. (Groundhog Day). Tell Dean that the four of us need to start planning a 77th Birthday.

Remember, we can't stop making future plans and this will help keep us on positive track and thinking.

Our prayers, thoughts, cares and hope,

Dru and Bob

Hi Bob and Dru!

Guess what, Dean's birthday is February 1, he is one day older! I just told Dean about your birthday, he couldn't believe it! Yes, we do need to begin planning that 77th birthday. :-)

Today was a long day for us, we arrived at Moffitt at 7:30 a.m. for an 8:00 a.m. lab., then filled out some paperwork and saw Dr. Lancet around 10:30 a.m. He is a very nice doctor.

Unfortunately we did receive some bad news, but it was expected. Dr. Lancet doesn't feel that Dean would do well on Vidaza, Dean had been on Dacogen for almost a year before it stopped helping.

Dr. Lancet seems to feel there are not anymore options left for Dean, just transfusions for now. All of Dean's counts dropped since last week, his hemoglobin was 7.8 and his platelets were 8. Dean is scheduled for transfusions tomorrow at our local hospital.

Dr. Lancet felt that Dean's weakness and shortness of breath were because of his counts and said that Dean may have to receive transfusions more frequently.

We were told of a new trial that is beginning this week, and spoke to someone on the trial team, but it was so much to take in. Dean would have to go through another bone marrow biopsy, physical exam and blood work before we would even know if he would qualify. The trial has only been done on animals, this would be the first time it was done on humans, and there is no guarantee that it would prolong Dean's life, it may actually shorten it.

Even if Dean and I decide to take part in the trial, and he did qualify, he wouldn't begin receiving the drug until the end of September. So it is a lot to think about. The person we spoke to gave us paperwork concerning the trial, told us to speak to our doctor, friends and family before making a decision. We have no siblings or immediate family, but hopefully our friends will help us come to the best decision.

I wish it was better news, but I think Dean and I already knew that it wouldn't be good. We are scared, very scared, maybe we are in shock, but yet I know deep down we both knew that there wouldn't be many options left. We have an appointment with Dean's oncologist on Monday and have many questions for him.

Tomorrow Dean will receive a transfusion of packed red blood and platelets again. The last transfusion did make him feel better and his counts went up a little, so that is good.

Hey, let's keep planning that very special 77th birthday for two very special gentlemen!

Thank you so much Dru and Bob for your kind words, support and prayers!

We will be thinking of you and your family and your visit to John Hopkins. Do you have CBC tomorrow?

We are sending lots and lots of hugs to you and Dru.

Love, faith, hope and prayers always,

Patti and Dean

[slip up 2]

Patti...was thinking about you 2 all day....the trial sounds very interesting, do you know what drug it is......kate

[PattiDean]

Originally Posted by slip up 2

Patti...was thinking about you 2 all day....the trial sounds very interesting, do you know what drug it is......kate

Unfortunately Kate we do not know. The trial only has a number right now, apparently it just opened up this week, it hasn't been tested on humans up to now. Dean and I have so much to read about this trial before making a decision.

[bebop]

praying for you and Dean Patty.

[PattiDean]

Originally Posted by bebop

praying for you and Dean Patty.

Thank you for those much needed prayers!

[Al's Wife]

Patti,

You know we were told that since Al did not respond to Vidaza, he would not respond to Dacogen and they gave it less than 2% chance of working. But we figured 2% was better than 0%. Fortunately, the Dacogen has kept him stable for the last year and actually his numbers have been up the last month and he did not have to have a transfusion last month. He has needed monthly transfusions for the last year.
So if you decide not to do the clinical trial, you might consider trying Vidaza. And even though we've had 3 or 4 doctors tell us if you don't respond to one, you won't respond to the other, my husband and others on and off this forum are living proof that some people do respond to one and not the other.
I mean, if the doctors say there are no more options, why not try the Vidaza or perhaps Dacogen with another drug. I know they are doing some of that "out of the box" (Kirby's term - God rest his soul) thinking at some of the hospitals, where they will put you on two different drugs.
Good luck and God bless. We are praying for y'all.

[PattiDean]

Originally Posted by Al's Wife

Patti,

You know we were told that since Al did not respond to Vidaza, he would not respond to Dacogen and they gave it less than 2% chance of working. But we figured 2% was better than 0%. Fortunately, the Dacogen has kept him stable for the last year and actually his numbers have been up the last month and he did not have to have a transfusion last month. He has needed monthly transfusions for the last year.
So if you decide not to do the clinical trial, you might consider trying Vidaza. And even though we've had 3 or 4 doctors tell us if you don't respond to one, you won't respond to the other, my husband and others on and off this forum are living proof that some people do respond to one and not the other.
I mean, if the doctors say there are no more options, why not try the Vidaza or perhaps Dacogen with another drug. I know they are doing some of that "out of the box" (Kirby's term - God rest his soul) thinking at some of the hospitals, where they will put you on two different drugs.
Good luck and God bless. We are praying for y'all.

Hi Linda!

It is so nice to hear that Al is doing better and better, you both have been through so much up until now.

Dean and I feel like we are hitting a wall. He was doing well on Dacogen for almost a year. Though his counts weren't great, they were low, they were still fairly good. His white's gave him the most problems, so he had to get Neupogen frequently, and sometimes platelet transfusions, maybe once a month or so. Then in June all of Dean's counts began to fall, fairly quickly also.

His oncologist in Clearwater said that the Dacogen was no longer working. Dean did another BMB, it showed his blasts were 15% and he now had Myelofibrosis. A previous BMB in September 2012, after being on Dacogen, showed blasts of less than 5%, so they were now increasing. This oncologist sent Dean to Moffitt for a second opinion. Over the last couple of months Dean has been very, very weak, having difficulty breathing and not much of an appetite. He had two transfusions of PRBC and platelets which seemed to help for a few days.

The doctor at Moffitt was very kind, but he told Dean that once someone is on Dacogen or Vidaza and they stop responding, then usually the other drug will not work, so he said Dean would not do good on Vidaza. He asked Dean about going on a new trial, saying that is Dean's only option. We haven't made a decision regarding that yet, so much to think about.

Dean and I want to try Vidaza, but both his oncologist and the oncologist at Moffitt are telling us "no".

The other problem we had today. Dean's counts are low, he had a transfusion yesterday and his counts came up slightly today, but still low. His platelets are now 13, they were 7 on Tuesday. His hemoglobin is now 8.2 today, it was below 8.0 before the transfusion.

Dean's oncologist here says they won't do a transfusion unless his platelets are below 10, and his hemoglobin has to be below 8.0. The doctor in Moffitt said those numbers do not work for everyone, and that maybe Dean needs transfusions at higher numbers, which his symptoms suggest.

After labs today, his oncologist here refused to schedule Dean for a another transfusion, he says we can wait until Monday. Dean is so tired of being tired, he is talking about giving up now. When we left the cancer center today he felt defeated and was in tears. Monday seems so far away, and we don't know where to turn now.

No transfusions unless his counts go lower, and no Vidaza, even though Dean wants to give it a try. He would rather do that than the trial.

We are trying so hard to stay positive, but today was a challenge. Sometimes I think doctors don't even understand how difficult it is. I know they have to follow insurance guide lines, but the oncologist in Moffitt said that if a patient presents with symptoms like Dean, they can receive transfusions. Is that right?

Thank you Linda for your very kind and positive post. I remember Kirby and "out of the box"! Wish we had an oncologist who felt the same.

Lots of love, hugs, faith, hope and prayers always,

Patti and Dean

[Al's Wife]

Patti,
I have been where you are and I know how frustrating and scary it can be. I think most criteria for giving PRBC transfusions is under 8.0 but they always give Al 2 units. He takes Amicar for clotting and has lived with platelets under 10 for a year with no bleeding problems, thank goodness.
We go to a local oncologist now and he actually listens to me and twice he followed my suggestions. One, he put Al on Dacogen and, two, after keeping Al stable for several months I asked him if he thought lowering the dose and seeing if he stayed stable would be a good idea. I had read on the Internet where that worked for elderly patients and was less toxic. So far it has worked for us! But I'm not naive to think it will work forever. Just taking one day at a time.
If the clinical trial Moffitt is talking about is the one I read about Online it actually cured the mice of cancer. Of course they have no way of knowing if it will be safe and work until it's been through years of trials.
I am so praying that Dean and you will find peace with whatever decision you make.
This disease is so terrible on our loved ones and on us. Al is not the same person and he is ALWAYS tired but manages to keep going. He does take a lot of naps which he NEVER did before MDS/AML.
Keep in touch,

[tytd]

Dear Patti and Dean,
I have followed your story and am very sorry that the Dacogen is no longer working for Dean. I felt compelled to write and tell you to perhaps confront your oncologist about his strick cut-off of "below 8" for transfusion. It sounds to me like he is treating a number instead of a person. I think some oncologists apply the same guidelines for RBC transfusion that they use for patients on chemo ( who may have a normal bone marrow capable of regenerating normal RBCs) to MDS patients whose marrows are sick. I would refer him to a recent article by Dr. Fenaux entitled "How I treat low risk MDS". ( I know Dean has high risk disease). In speaking to the question about RBC transfusions when other therapies fail he writes, " anemia will eventually become resistant to all available drug treatments,......and will require repeated RBC transfusion. For those patients, it is recommended to administer transfusions at sufficiently high Hemoglobin thresholds (ie, at least 8 and 9 or 10 in cases of comorbidities worsened by anemia (e.g. coronary artery disease, heart failure) or in cases of poor functional tolerance). In addition, a sufficient number of RBC units should be transfused each time, over 2 or 3 days if needed, to increase the hemoglobin level to greater than 10 and thereby limit the effects of chronic anemia".
I know he is talking about patients with low risk disease but I think this would also apply to patients like Dean to preserve his quality of life. I think, too, that in males, especially elderly males who might have heart and lung issues, that a trigger below 9.0 instead of below 8.0 might be more reasonable especially if he is symptomatic. Does he get 2 units at a time?? If your oncologist will not listen to you maybe you could have Dr. Lancet at Moffitt speak with hem about this issue. Do not be afraid to stand up to your M.D. -- you are partners. Good Luck tytd

[billyb]

We get transfussions when we think we need them even if there not at the threshold level, I think some doctors are scared of iron overload or giving to much blood to soon, but even as everybody reacts different to different meds, everybody feels different at different levels, if the national standard is Hemo 8 and Hema 24%, before transfussion, someone else could be higher.

[PattiDean]

Originally Posted by Al's Wife

Patti,
I have been where you are and I know how frustrating and scary it can be. I think most criteria for giving PRBC transfusions is under 8.0 but they always give Al 2 units. He takes Amicar for clotting and has lived with platelets under 10 for a year with no bleeding problems, thank goodness.
We go to a local oncologist now and he actually listens to me and twice he followed my suggestions. One, he put Al on Dacogen and, two, after keeping Al stable for several months I asked him if he thought lowering the dose and seeing if he stayed stable would be a good idea. I had read on the Internet where that worked for elderly patients and was less toxic. So far it has worked for us! But I'm not naive to think it will work forever. Just taking one day at a time.
If the clinical trial Moffitt is talking about is the one I read about Online it actually cured the mice of cancer. Of course they have no way of knowing if it will be safe and work until it's been through years of trials.
I am so praying that Dean and you will find peace with whatever decision you make.
This disease is so terrible on our loved ones and on us. Al is not the same person and he is ALWAYS tired but manages to keep going. He does take a lot of naps which he NEVER did before MDS/AML.
Keep in touch,

Hi Linda,

Dean is at the hospital right now, receiving PRBC and platelets. He woke up early this morning so weak that he couldn't get to the bathroom without my help, and his breathing was very heavy.

I drove him over to the emergency room, and thankfully after doing a CBC, and talking to his local oncologist, agreed to give him the transfusion. He will be there a few hours, when I left to come home to take care of Pebbles, he was sleeping.

The clinical trial (17280) that Moffitt spoke to Dean and I about is not posted yet. It really isn't going to begin until the middle of September or later. Dean is not sure he will be well enough to do the trial by then. He has to have another BMB, physical exam, and blood work to see if he would qualify, and he doesn't know if he has the strength to go through that. He just had a BMB the beginning of July, but Moffitt would want him to have another one if he decides to go into the trial.

I think Dean would rather try the Vidaza, instead of sitting here waiting and wondering. His last treatment with Dacogen was the end of May, and he is going downhill so fast since then.

Dean has been getting Procrit weekly for the last four weeks, but Moffitt said he has to discontinue the injections immediately if he decides to take part in the trial.

He is so very weak and tired. Our oncologist here doesn't seem to understand how awful Dean feels. At least the oncologist, Dr Lancet, in Moffitt acknowledged Dean's symptoms and said he should be having transfusions based on his symptoms not his numbers.

We have an appointment with Dr. Miranda, Dean's oncologist here, on Monday. It will be interesting to see what he says. Dean wants to ask about beginning Vidaza. If Dean were to go through the tests at Moffitt that are required for the trial, and then didn't qualify, it would be another month of waiting and nothing being done.

Seeing how Al has responded to Dacogen, after trying Vidaza, gives Dean hope, and that's all he wants right now.

Thank you Linda for giving us the hope and encouragement to keep going. We need that so much right now!

Lots of love, hugs and prayers to you and Al.

Patti and Dean

[PattiDean]

Originally Posted by tytd

Dear Patti and Dean,
I have followed your story and am very sorry that the Dacogen is no longer working for Dean. I felt compelled to write and tell you to perhaps confront your oncologist about his strick cut-off of "below 8" for transfusion. It sounds to me like he is treating a number instead of a person. I think some oncologists apply the same guidelines for RBC transfusion that they use for patients on chemo ( who may have a normal bone marrow capable of regenerating normal RBCs) to MDS patients whose marrows are sick. I would refer him to a recent article by Dr. Fenaux entitled "How I treat low risk MDS". ( I know Dean has high risk disease). In speaking to the question about RBC transfusions when other therapies fail he writes, " anemia will eventually become resistant to all available drug treatments,......and will require repeated RBC transfusion. For those patients, it is recommended to administer transfusions at sufficiently high Hemoglobin thresholds (ie, at least 8 and 9 or 10 in cases of comorbidities worsened by anemia (e.g. coronary artery disease, heart failure) or in cases of poor functional tolerance). In addition, a sufficient number of RBC units should be transfused each time, over 2 or 3 days if needed, to increase the hemoglobin level to greater than 10 and thereby limit the effects of chronic anemia".
I know he is talking about patients with low risk disease but I think this would also apply to patients like Dean to preserve his quality of life. I think, too, that in males, especially elderly males who might have heart and lung issues, that a trigger below 9.0 instead of below 8.0 might be more reasonable especially if he is symptomatic. Does he get 2 units at a time?? If your oncologist will not listen to you maybe you could have Dr. Lancet at Moffitt speak with hem about this issue. Do not be afraid to stand up to your M.D. -- you are partners. Good Luck tytd

Wow, thank you tytd. I am going to print out your post and bring it with us to our appointment with Dean's oncologist on Monday.

Dean is at the hospital right now receiving a transfusion of PRBC and platelets. He woke up this morning extremely weak and having difficulty breathing, so I drove him to the emergency room.

The doctor there called Dean's oncologist, and thankfully he agreed to let Dean have the transfusion. Yippee. I just came home to take care of our "little girl" (a 13 year old Chihuahua), and when I left, Dean was in the chair sleeping while the platelets dripped into his arm.

What your article stated is basically what Dr. Lancet at Moffitt told Dean, that he should receive transfusions when he is symptomatic, not by what the numbers show. Dr. Lancet said that some folks are fine with hemoglobin at 8.0, and others show symptoms and need to have a count of 9.0 or more.

Dean also has heart problems, he has had a few heart attacks previously, and open heart surgery in 1998. He recently went through a thorough exam by his cardiologist who told Dean his weakness and breathing issues are not related to his heart, there has been no changes with his heart in the last few years.

Dean did have a transfusion about two weeks ago, and he felt stronger for a few days, so it did help. His last transfusion was Wednesday, his counts were so very low, and yesterday when he had his labs, his counts did go up, his platelets were 13 and his hemoglobin was 8.1, which is why his oncologist didn't want to do another transfusion, he wanted Dean to wait until Monday to see what his counts would be.

Dean was so exhausted and weak, he didn't want to wait another four days. He just kept saying he is so tired of being tired and if he is going to keep on feeling so weak, he wants to give up. This morning he cried all the way to the hospital, telling me he was sorry, when he can't help what is happening, so he shouldn't apologize for anything.

Thank you again for passing the information on to Dean and I. We really, truly appreciate you taking the time to share this with us!

I am going to get back to the hospital. Hoping Dean feels better! :-)

Lots of hugs!

Patti and Dean

[PattiDean]

Originally Posted by billyb

We get transfussions when we think we need them even if there not at the threshold level, I think some doctors are scared of iron overload or giving to much blood to soon, but even as everybody reacts different to different meds, everybody feels different at different levels, if the national standard is Hemo 8 and Hema 24%, before transfussion, someone else could be higher.

Thank you Billy for sharing this with us. Wish we could get Dean's oncologist to understand. We hear one thing from Dr. Lancet in Moffitt, who said almost the same as you, and something else from Dean's doctor. At least Dr. Lancet acknowledged that Dean was feeling poorly, and raising the threshold level would probably help him, that the current levels appear to be too low for him.

Have to run and get to the hospital.

Love and hugs! Patti and Dean

[billyb]

Originally Posted by PattiDean

Thank you Billy for sharing this with us. Wish we could get Dean's oncologist to understand. We hear one thing from Dr. Lancet in Moffitt, who said almost the same as you, and something else from Dean's doctor. At least Dr. Lancet acknowledged that Dean was feeling poorly, and raising the threshold level would probably help him, that the current levels appear to be too low for him.

Have to run and get to the hospital.

Love and hugs! Patti and Dean

Patti ask for doctor if dean is healthy enough for provigil ( they use it for narcolepsy ) Tina gets it becase she gets so exhausted sometimes she dosent want to get out of bed, it works wonders for her

[PattiDean]

Originally Posted by billyb

Patti ask for doctor if dean is healthy enough for provigil ( they use it for narcolepsy ) Tina gets it becase she gets so exhausted sometimes she dosent want to get out of bed, it works wonders for her

Thank you Bob, I have written that down and will ask Dean's doctor on Monday. We have a whole lot of questions for that visit. :-)

Does Tina get discouraged with constantly feeling exhausted. Recently Dean says he is so tired of being tired all the time.

Love, hugs, faith, hope and prayers to you and Tina!

Patti and Dean

[billyb]

Yes, Tina gets very discouraged, she told me today she dosent know if she wants to continue treatment anymore, that it is getting to be to much, we are at the hospitol 16 days a month now, Im hopeing it is just a phase she is going thru. Depending on what type of AML you have determines your outcome, unfortunately ours is not a good type and we are holding on by strings, so we just keep our head up and carry on, it is so very hard at times though, she has been going downhill in the past month and I know it is frustrating her.I guess thats the ugly side of Leukemia

[Al's Wife]

Billy, Tina, Patty and Dean,
That overwhelming tiredness seems to be the
biggest problem with AML. As I type this Al is still
in bed. I feel sure he'll need a tranafusion when
he goes for labs this week. Such a rollercoaster
ride. The fear of the "what if" is heavy on my
heart today so I'd better get up and get busy.
God please give us all strength.
Prayers for all,