Starting Fifth session of Dacogen - I question any response

[milliken2]

Hello All;

Here are some of Earl's last blood draws - at this time, he had completed 4 sessions of Dacogen - we are just starting the 5th today

July 09 - WBC 4.4 RBC 2,57 Hgb 8.3 HCT 23.8 PLT 21

July 12 WBC 2.8 RBC 2.36 Hgb 7.7 HCT 21.8 PLT 16

July 16 WBC 1.7 RBC 2.56 Hgb 8.3 HCT 23.5 PLT 43

July 19 WBC 1.7 RBC 2.32 Hgb 7.5 HCT 21.4 PLT 39

July 23 WBC 1.3 RBC 2.5 Hgb 8.1 HCT 22.9 PLT 34



Of course, many other results are present, but he was transfused on 7/13 with 2 units of PRBC's and one large bag of platelets. He received another 2 units of PRBC's last Friday the 20th, and is due to get another 2 units on Wednesday the 25th of July. To me, this says that the Dacogen is not working, since he is getting 6 units of blood in less than 2 weeks. He is very weak, and his mouth is ulcerated making it difficult for him to eat. He has been using the magic mouthwash as well as Nystatin to swish - and has not had any relief. His mental cogntion is not what it used to be at all. Not even 2 months ago - it's worse.

Any ideas or advice would be appreciated.

Beth

[Al's Wife]

Beth,

I wish I had some advice but just wanted you to know that I'm thinking about you and know this is a difficult time. They took Al off Vidaza after six months because he had no improvement, but I've wished they had given it a bit longer. I've read where MDS patients have not responded to Vidaza or Dacogen for seven or eight cycles and longer.
Hang in there and keep the faith. Believe me, I know it's hard, especially with your nursing background as you probably understand the numbers much better than most of us. Hopefully Earl will start responding soon and he won't need the transfusions as often and eventually not at all.
These are difficult days but know that there are others who care and we're praying for you and Earl.
God bless,

[milliken2]

Linda;
Thanks for the words of encouragement - they mean more than I can ever tell you. Yes - it is VERY hard for me as a nurse to watch Earl's demise - but at the same time, I do know the 'necessary numbers' and push for transfusions or meds as needed. His transfusion level is a Hemoglobin rate of 8.5 - normal Hgb for males (not MDS affected) is 13-17. If I can get Earl's anywhere above 9 - we celebrate! The hema/onc that is treating him likes to use the rate of 8.0 - but Earl just can't function there. We did agree to wait on a transfusion when he was 8.3 - but then - he seemed to be walking without assistance - and didn't need help getting up from the bed or a chair. But with today's level - I pushed for the transfusion - and I don't think I will ever let him get below 8.5 again - it makes it too hard for him to regain some strength. I do know that the last BMB showed a 2% increase in blast level - and these last 2 were done at the same independent lab. The hema/onc doesn't seem too concerned - but when I asked about Promacta or Exjade for the excess iron - he seemed a but perturbed. I guess he is not used to having a wife who asks so many questions.
Good Luck to you and Al, and know that you are also in our prayers.

Beth

[Sally C]

Dear Beth,
I really can't offer anything from a medical standpoint. Just know you and Earl are in my thoughts.
With this disease, things can look so dire and then they will slowly start to improve. I pray this will be the case with Earl.
He is very blessed to have such a supportive and knowledgeable wife.
God Bless,
Sally

[Al's Wife]

Beth,

If Earl's doctor doesn't like a wife who asks a lot of questions, then he sure as heck wouldn't like me. I go in with my list at EVERY doctor's appointment and I will continue to do so, whether they like it or not. Hey, we're talking about our husbands here!
Try to keep your spirits up (I know it's tough, believe me) and I hope Earl is better today.

[Greg H]

Hey Beth!

Sorry to hear that Earl doesn't seem to be responding to the Dacogen. I'm with the others in suggesting that you keep on it for at least six months. I think that's generally considered standard of care.

But it also makes sense to play the "what-if" game and think about what the next step might be if we get to six or seven and things still aren't looking up.

So, there's transplant, which may not be possible because of age and comorbidities, right?

There's Vidaza, which works more or less in the same way as Dacogen. Some folks who don't respond to one do respond to the other, but, if Earl's had no response to Dacogen, that might be a tough call to make.

There's Revlimid, which has best success in folks with deletion 5q. I'm guessing Earl doesn't have deletion 5q, or he'd already be on Revlimid.

There's immunosuppression, which is generally used in lower risk folks. I'm not sure about its utility in higher risk folks. But it might be worth exploring, particularly if he has Trisomy 8 or hypocellular marrow.

[What do we know about Earl's chromosomes at this point?]

Next option is clinical trials, and there are a bunch of them out there, some trying agents like Promacta, some combining various drugs with Vidaza or Dacogen to try to increase effectiveness. Finding the right trial might be the ticket; it has definitely worked for some folks around here. The key is finding one you can reasonably get to that sounds like it fits Earl's disease profile.

Take care!

Greg

[milliken2]

Hello All;
And again - thanks for everything. Earl had 2 units of PRBC's and one large bag of platelets on 7/13, and another 2 units of PRBC's on 7/20, 2 more on 7/25, and another 2 units of PRBC's and huge bag of platelets on 7/30.

We had his labs drawn this AM - and his platelet level was only 13,000, and the Hgb was only 8.3 He gets 2 injections a week - 60,000 each time of Procrit - but I don't see that it is helping either. The Dr. ordered a platelet transfusion for tomorrow, but refused to order the blood - and I know we will be on a downhill slide over the weekend. But, they have 'pre-ordered' the blood for Monday - this will make 10 units in less than a month. So, in my opinion, the Dacogen isn't doing it's job. He was wiped out Tuesday after the long day on Monday, but is feeling a lot better tonight.

In fact, we had a wonderful evenng. For my birthday last week, he had bought us tickets to the Chicago/Doobie Brothers concert - not only tickets - but V.I.P. tickets which gets you better parking than even a handicapped sticker. Too, we ate in the VIP lounge, and had a private box in a wonderful location. We both really enjoyed the concert, but he was wiped out by the time we got home - and is already down for the count - but it is 2:04 AM.

((((HUGS))))
Beth

[Birgitta-A]

Hi Beth,
Congratulations to the successful evening with concert and dinner !
Kind regards
Birgitta-A

[milliken2]

Briggita;
Yes - we had a wonderful time. When Chicago played 'Color My World', Earl asked me to dance - and of course I said yes. It was the bridal song we danced to at our wedding 41 years ago. There were tears streaming down my face, and it was a very special moment.
Then, back to reality - knowing that he had to go to hospital on Friday for the platelet transfusion - and knowing that he is due for another 2 units of blood on Tuesday. Should have actually had it on Monday, but the infusion lab is having some work done to it, and short stay was too crowded with other procedures.
Briggita - I know you have done a lot of research - and is this type of blood loss that he has been going through - 10 units in 20 days - a bad sign? Please be honest with me - the uncertainty is harder to deal with than the reality. Thanks
Beth

[Birgitta-A]

Hi Beth,
As you perhaps know I have received 142 units of PRBCs myself. I am not afraid of blood txs though I know they will increase my ferritin level and probably increase my irregular antibodies. I have always been more scared of low platelets because there are no drugs approved for low platelets for MDS patients.

A high ferritin level can after several years damage liver, heart and other organs. The first sigh will be increased liver tests but Earl doesn't have to worry about that now.

I had irregular antibodies from start probably after childbirths and have to leave blood one day before tx because it is difficult to find blood for me. That is no problem because I live near the hospital.

You asked if it is a bad sign to need much txs and the answer is that I only know that it is important to give all support therapy that is needed during treatment with chemo like Dacogen or Vidaza.

I think it is a positive sign that Earl can go to a concert and have dinner with dance afterwards - he must be strong.
Kind regards
Birgitta-A

[milliken2]

Brigitta;
The units he will receive on Tuesday will make a total of 160 units of blood since the middle of August last year - that's when I started counting. He had received many more prior to that - but not as often - and at that time they were attributing it to his APS - Antiphospholipid Antibody Syndrome, or as it is known in England - Hughes Syndrome.
I say he is strong in the heart - because we danced during the concert when they were playing Color My World since he knows it is a very special song for us, and probably more so for me. He was all in by the time the night was over, but we made it, and that's what's important.
He is my love, my life, my best friend, my partner, and my loving husband. I know he is fighting for me - but I also know that there comes a time when I will have to say goodbye - and I am just not ready for that yet. Selfish, I know - but honest for sure.
He is geting Desferal after every tx - and they are trying to have Exjade approved by eiter the state coverage, or through the Veterans Admininstration. The hema'onc says that the increased iron can cause the pain in his joints, since that is one of the places the iron/ferritin deposits. So - it is a hurry up and wait game again.
Thanks Briggita - you are a love!

Beth

[Birgitta-A]

Hi Beth,
Good that Earl is getting Desferal that doesn't have so much adverse effects as for example Exjade. I have been treated with Desferal 2007 until 2010 without any problems. Exjade decreased my WBCs and I could never take more that 500 mg though I should have been taking 1 250 mg according to my weight.

The most important issue for Earl is that his counts will increase - I am sure that you are aware of that. We can only hope that they will start to improve after the 6th cycle of Dacogen.
Kind regards
Birgitta-A

[Sally C]

Dear Beth,
There is really nothing I can add to this medically. All is can say is there is always hope as I'm sure you know.
So many people on these forums - my husband included - have been at at a point where all seemed lost and then things turned around - in my husband's case - dramatically. This disease is so unpredicatable.
You are a wonderful wife and nurse and I know he appreciates you so much. You and Earl have a beautiful marriage and so much love. If anything can pull Earl through this it's your love and God's Grace.
I wish you both well.
God Bless,
Sally

[PattiDean]

Hello Beth,

I have been following your thread, and it is almost as though I am reading about my husband, Dean. I am not up to date on many of the different treatments available as my husband was diagnosed June 27 with MDS - RAEB-t, his blasts were 17%. We are just in the beginning of all of the ups and downs of this awful disease.

My husband has only had one session of Dacogen, July 9 - 13, he is scheduled to begin his second session tomorrow. He seemed to do fine during the week he was receiving treatment. His labs were as follows:

WBC 1.0, RBC 2.71, HGB 9.3 and PLT 19 - July 9, first day of Dacogen
WBC 1.7, RBC 2.45, HGB 8.7 and PLT 15 - July 13, last day of Dacogen

On Saturday, July 14 he went to the hospital to be transfused with 6 units of blood and 2 units of platelets.

On July 15, Sunday, we met his oncologist in the office so he could give my husband an injection of Neulasta.

On July 16, Monday, my husband was very weak and his body was trembling, he stayed in bed all day.

July 17, Tuesday we had an appointment with the oncologist for lab work. They drew the blood and immediately they told us to get to the hospital. Dean's lab showed:

WBC 0.3, RBC 3.01, HGB 10.1, PLT 3

Dean was so weak, he couldn't even stand up, he tells me he doesn't even remember going to the hospital or even me visiting with him. Dean was in the hospital until July 24, he received transfusions almost every other day and Neupogen injections everyday. They had him in isolation and removed his PICC line, so his arms were black and blue from drawing blood and his veins began to collapse or hide.

Everyday after being released from the hospital, until yesterday, we drove to the oncologist's office for lab work and Neupogen, even on the week end.

On Thursday Dean had another transfusion of blood and platelets. Friday was the best counts Dean has had since his dx. The doctor told us we don't have to come to the office this week end for labs or Neupogen, it felt good to finally have a quiet week end.

WBC 2.5, RBC 3.35, HGB 10.3 PLT 43

Dean is to begin his second session of Dacogen tomorrow. He is apprehensive because of what happened after his first session. The oncologist also wants to begin Dean on Revlimid, but we have to go to the VA to see if they will cover it. Dean receives all his other prescriptions through the VA.

My husband is still very weak and tired, he tries to get up and do something, but he begins shaking and gets short of breath. We feel like we will never get our lives back, and your last post said exactly how I feel. It is just Dean and I, he is my best friend and I don't know what I will do when he is no longer here. It frightens me. I know Dean is fighting because he doesn't want to leave me, but it is sad to see all that he has gone through since we found out he has MDS.

Your posts seem to say everything I am feeling, but I don't know how to put my thoughts into words. Thank you.

Patti

[milliken2]

Briggita, Sally & Patti;

Thank you all so much for your understanding, encouragement, and most of all hope. Of course, I pray everyday that The Lord will take this disease away from Earl - and like I tell Him - give it to me - I can handle things better, and can ask questions when needed without being told.
Patti - 6 units of blood at one time is a LOT of blood - sounds like Dean had been sucked dry - since your body only has between 5 and 6 pints of blood to start with. I know this almost happened to Earl when we were in Florida over the winter - I was there when he had the first 2 units - and then they gave him another 2 during the night - and he called me at 6:30 AM and said they were going to give him another 2 units. I said an emphatic NO - and called the nurses station and talked to the supervisor. Makes me wonder if he even needed the second 2 units since it was the same nurse who did the blood draw - but this time I was present. Since he had a PICC line in at the time, an RN had to do the blood draw. I told her to wait until I got there before anything else was done. Here, they had been testing Earl's counts on the diluted waste tube, instead of drawing another one out for his CBC. Hence - he did NOT get the last 2 units. Make sure when they check Dean they are not using the waste blood.
I can only hope his counts improve. We go tomorrow AM again for his Monday blood draw - then he will get the 2 units on Tuesday. I am sure his levels are below 8.0 for his Hgb - since they were 8.3 on Friday, and he has had a continued downward weakness over the past 2 days. But - I sure would love to see them improve for sure. This will start his 2nd week off chemo - so in 2 weeks we start the 6th session of Dacogen. We do have an asppointment with the hema/onc on Tuesday - and for sure - I am already prepared with some questions.
Take care ladies.

((((HUGS))))
Beth

[Al's Wife]

Beth,

Praying for better counts for Earl. I have learned so much from your posts. Not having any medical training, this blood talk is like reading Greek. But you make it so much easier to understand and have given me new things to ask about and look for.
We go to Tampa again this week (Al has been in the trial one month) and of course I'm anxious, as always. I don't expect his platelets to be much better as he still has the petechiae really bad on his legs, but I'm hoping the numbers will be up.
Take care,

[PattiDean]

Dear Linda,

Just letting you know that you and Al will be in our thoughts and prayers during your visit to Tampa!

I do hope it is good news for you both, it has been a very rough month for you, you need good news now.


God Bless and lots of Hugs!

Patti and Dean

[maria&lola]

Happy belated birthday, Beth. It's so sweet that you had such a wonderful celebration.

I just want to tell you all how much I admire your strength!

[milliken2]

Maria and Lola;

Thanks so much for the belated birthday wishes. And yes - it was a wonderful evening - one that I will remember forever. I have saved the wrist bands, tickets, etc, and put them in my journal. Sometimes those 'memories' need refreshing.

He has had a bad week - got a large bag of platelets on Tuesday - and the Dr. refused to order blood as well, even though his Hgb was 8.3 - and I am beginning to wonder about that. We had a blood draw this AM - and his Hgb was down to 7.1, and his platelets are still only 14,000. So, tomorrow, we go back to the hospital for 2 units of blood, one large bag of platelets, and the Desferal afterwards. This will mean an all day hospital day for him. I will get him settled, then come home and do laundry and probably mow the grass.

We have an appointment with a GI doc on the 23rd of the month - and I am going to have him get the upper and lower GI, and also request the camera endoscopy to make sure there is not a bleed somewhere. It seems that he has just been getting too much blood, and the transfusions don't even seem to give him any energy anymore. He's just exhausted all the time, and can't do a thing. and I don't think the Dacogen is doing a thing, except to make him weaker.

Thanks again for the well wishes- but it is Earl who needs the help and prayers.

Beth

[maria&lola]

I'll definitely keep Earl in my prayers for better/stronger days ahead.

My mom had the upper/lower GI and was due to have the pill cam, just before her MDS diagnosis. She hasn't had the time or energy to go back for follow up.

For awhile there it seemed like it was one thing after the other with her...almost cruelly comical...so I know how it feels. Hang in there.

[Cheryl C]

Hi Milliken - so sorry to hear what you and Earl have been going through.

On Sunday a local farmer in Western Australia was telling my husband and I about Maroon Bush tea. Re your husband's mouth ulcers, I just went on the website this morning and read the testimonials, one of which stated that this tea - an old Aboriginal medicine - has been effective for mouth ulcers in a cancer patient. Here's the website if you care to investigate.

http://naturalcancertreatment.org/content/view/17/1/

May you feel God's peace and his comforting, encouraging presence close to you as you continue to oversee Earl's health and treatment.

Cheryl