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[PattiDean]

After being offline for a week my internet service is now back.

Dean received his first Dacogen treatment July 7 -13. On July 14 he had to be transfused with blood and platelets. Sunday, July 15 his oncologist met him at the office and gave him an injection of Neulasta.

Monday July 16, Dean had involuntary twitching of his arms, was very tired and didn't want to eat, he had no fever. Tuesday, July 17, we had an appointment with his oncologist for blood work, after getting the results of the blood counts, Dean was immediately admitted to the hospital.

His WBC 0.3, RBC 2.7, HGB 8.1, PLTS 3. Dean was in isolation, received IV, antibiotics, packed blood, platelets and daily injections of Neupogen. Yesterday he came home from the hospital. His counts improved slightly, WBC 0.7, RBC 3.1, HGB 10.1 and PLTS 11.

For now we will be seeing his oncologist everyday for blood work, and having transfusions when needed.

How long can he be on Neupogen?

We are still trying to be approved for help with the Revlimid, but have not received an answer.

Dean is very tired and weak, it has been a busy three weeks, first finding out he had MDS, the week on Dacogen, which was actually a good week for Dean, he had no problems, and now another week in the hospital. It is sure good to have him home.

We have missed the boards and the support we receive from each of you through this disease. Sally and Linda have sent us emails with encouraging words and keep us going.

Thank you everyone, it is nice to be back.

[milliken2]

Patti;
I am so sorry Dean is going through this, but I can tell you - you are certainly not alone. Earl has been on a downhill slide as well. He started his 5th session of Dacogen on Monday, but like Dean - is very weak, tired, and has no appetite. He is not fond of the Boost/Ensure at all, but now he has mouth ulcers, and he can't really chew. I am going to make some pudding today, and use the Boost as the milk portion - and hope it works - then hope he eats it.
I know Earl gets the Neulasta every Monday after his Friday of chemo. It does really tend to make his bones/joints hurt, so I give him arthritis strength Tylenol before we go.
Regarding your labs - are they done at the hema/onc's office or at your local hospital? For us, Earl has to have labs drawn twice a week - and the difference between the hema/onc lab and the hospital lab was great - the hospital labs I feel are much more accurate since they have a regular centrifuge there and the blood really gets spun out like it should. I don't know if you have been in the hema/onc lab - but there they draw one tube of blood - and it gets placed on a small see saw like board - that goes back and forth for a few minutes - then it is put in another machine - and the results come out right away. A regular hospital blood draw will take 45 minutes for it all to be centrifuged (spun VERY fast) and separated. The hema/onc lab gets the results within 5 minutes. Too - check with your insurance. I know Earl's insurance covers hospital labs completely - but if we have it done at a 'clinic' as the hema/onc's lab is considered - it's a $15.00 co-pay - so for that it would cost us an additional $120.00 a month. Not that we can't afford it - but I feel much more confident in hospital equipment.
Good Luck to You Both.

Beth

[Birgitta-A]

Hi Patti,
Too bad with Dean's severe adverse reaction to Dacogen though he managed well during the treatment!

You know when we have low neutrophils (the most important kind of white blood cells) we have to be very careful. Here is info about we have to think about: http://www.ssh.org.sg/Downloads/A%20...emotherapy.pdf

After three infections 2007 I got neutropenic fever with neutrophils 0.1. I was treated with antibiotics and Neupogen daily in the hospital and had to continue with Neupogen mostly 2 injections/week during 4 years. Since 2007 I live as if I have neutropenia just to be on the safe side.

Do remember that many drugs for example all pain killers can decrease platelets.

Hope Dean will feel better!
Kind regards
Birgitta-A
73 yo, dx MDS Interm-1 2006, transfusion dependent from dx, received 142 units of blood, Desferal and Exjade for iron overload. Thalidomide very low dose + Prednisone since 2010 with positive results. No transfusions since 2010.

[Al's Wife]

Good advice from all. Patti - so glad you've got your Marrowforums back and especially happy to hear Dean is home.
I'm wondering after reading what Birgitta wrote if Al should not take Tylenol. I'll have to look that up as he takes Tylenol PM sometimes to help him sleep rather than the sleeping pills the doctor ordered.
Al is feeling okay but his platelets are so low (6,000 by manual diff. and 1,000 by machine) that I worry about him constantly. We are changing local oncologist (well, not really changing - just going back to the MDS specialist who treated him at Emory for the last two clinical trials) for our weekly labs, as our regular oncologist does not want to do anything unless Al has active bleeding. Moffitt in Tampa says they transfuse at less than 10,000. Emory says transfuse at less than 10,000. Local oncologist said don't transfuse unless you start bleeding. We've been caught between a rock and a hard place and not knowing what to do. But beginning next week we are going back to Emory for weekly labs. Then the following week we will be back in Tampa for a bone marrow biopsy and hopefully some direction.
This is really a tough time for a lot of us with our loved ones. I can't imagine going through this alone - without the benefit of this Board.
Hope Sally and Don get good news today from his heart doctor. And Beth and Patti, I'm praying for good news for y'all too. We could all use a bit of good news.
Hugs,

[Birgitta-A]

Hi Linda,
In this info the doctor recommend Tylenol for pain - other painkillers like aspirin, Motrin, Aleve and Advil increases the bleeding risk more.
http://www.oncolink.org/treatment/ar...c=2&s=13&id=69

Hopefully Al's platelets function well - I get blisters in the mouth, petechia (very small bleedings i the skin) around my eyes and small bleedings from the nose when my dysfunctional platelets are 22,000.
Kind regards
Birgitta-A

[PattiDean]

Beth, Dean received Neulasta at the doctor's office the Sunday after he completed his first week of treatment with Dacogen. Our oncologist actually met us at his office, we have his home phone number and his pager number, tells us to call anytime we have a problem.

When Dean was admitted to the hospital on the Tuesday, which was after the Sunday he received Neulasta, the doctor changed his injections to Neupogen. He has been receiving an injection everyday in the hospital, eight days, and now that he his home, we drive to the doctor's office everyday for blood work and the injection of Neupogen. We are even meeting the doctor at the office on Saturday and Sunday so he can receive the injection. I do wonder how much Neupogen can one receive. I am discouraged though because today Dean's WBC is only 0.6, and his neutrophils are 0.0. When will the injections begin to work?

Dean will have to have labs done everyday for now. While he was in the hospital, the labs were being done there, now that he is home, they are being done at the doctor's office. The labs seem to both have the same results, don't know if that is good or bad since the results aren't all that good.

Thankfully Dean likes Ensure, the doctor told him to drink two bottles a day. Dean doesn't have an appetite, but he is forcing himself to eat, and the doctor told Dean if he feels like having a juicy cheeseburger and fries, to go ahead and have it.

We have Medicare Part A and B, and Dean's supplement is through AARP, so we have good coverage. Unfortunately Dean does not have Part D, for prescription drugs because up until now he wasn't on a lot of medication, just two for his heart, and he receives his medication through the VA. We checked with the VA regarding Revlimid last week, haven't heard back from them yet. Will call again next week to see what they tell us.

Birgitta-A, thank you for the information regarding the pain medication. Dean can only take Tylenol since he only has one kidney, so that was good news. Dean has not had any sores in his mouth yet, but he has only had one treatment of Dacogen.

Linda, you are so right, many people seem to be going through a lot at the moment, so sad. I know it has to be difficult to change doctors when you are trying to deal with all the ups and downs that go along with this disease, that should be what you are concentrating on, not finding a new doctor.

God Bless each of you, we keep you in our thoughts and prayers each day. Thank you for all your kind words and advice, it helps so much and means a lot to Dean and I.

(((Hugs))) always,

[Chirley]

Hi, I haven't worked in a lab for 15 years but CBC were never centrifuged. The test is performed on whole blood with an anti clotting agent. They are placed on a rack and moved around to ensure the blood is mixed well and the platelets don't clump.

It was mostly biochemical tests that were centrifuged and those tests performed on plasma or serum.

I can't imagine these techniques have changed much but I could be wrong.

Regards

Chirley

[Birgitta-A]

Hi Patti,
As far as I understand Neupogen should give effect at once but if the bone marrow is very suppressed it can perhaps take longer time. Actually I don't think Dacogen is the best drug for Dean - his bone marrow can't stand that drug.

I think it is OK to take Neupogen daily during a long time but many patients get joint pain from that drug when they take it daily. I have been taking Neupogen daily during 9 days when I tried a drug for iron overload that made my white blood cells decrease very much.

You know you could learn to inject Neupogen - it is not difficult. Dean's doctor is really very nice and engaged when he treats Dean in his office 7 days a week !

The problem with Revlimid is that the drug often decreases platelets initially. I am taking a relative to Revlimid called Thalidomide, that can decrease platelets too. When I started to take Thalidomide my platelets increased from 22 to 43 during 4 weeks (highest value 115) so we never know what effects a drug will have on our disease.
Kind regards
Birgitta-A

[PattiDean]

Hi Birgitta,

Thank you for the information on Dacogen and Revlimid. I try to read as much as possible, but I don't get that much time to do research. As I said, Dean is going to the oncologist office seven days a week for lab work and Neupogen, also to the hospital for transfusions when it is needed. This morning we had good news during our visit, Dean's counts have stayed the same, unfortunately no change in the WBC, but everything else, RBC, platelets, HGB, are not going down.

Wish the Neupogen would begin working, the WBC is 0.7, which is better than a week ago when it was 0.3, but I was hoping it would go up more after almost two weeks.

In my heart I think I know that the outlook for Dean isn't good, but he doesn't know that. His oncologist is a very caring and compassionate man, he will do all he can to help Dean, even meeting us at the office on weekends. We have his home telephone number and beeper number and he said to call him anytime we need to.

Is it unusual to be on both Dacogen and Revlimid. Dean didn't have any problem with Dacogen during his week of treatment, but two days afterwards he began twitching and became extremely weak, the next day he was in the hospital and all his counts were very low.

Dean is not on Revlimid yet, we are waiting to see if we can get assistance since Dean doesn't have prescription drug coverage, he receives his medications through the Veteran's Administration, we have also contacted them for help. We have been waiting two weeks, keep calling to find out what is happening and we get the same answer, "still working on it". Hope we don't have to wait too much longer.

Hopefully Dean's platelets will increase when he begins Revlimid. I know his doctor will keep a close eye on him and will try something different if he sees a problem.

I am not sure if I could inject Dean's Neupogen, thankfully the doctor has not suggested it.

Thank you again for all your help and information, it does help so much.

Patti

[Neil Cuadra]

Originally Posted by PattiDean

I am not sure if I could inject Dean's Neupogen, thankfully the doctor has not suggested it.

Patti,

That's what I thought when my wife needed daily injections. But I didn't want her to have to make an office visit every day, so I got a lesson from a home health care specialist, gritted my teeth, and gave my wife the injections myself. I felt mean for "stabbing" her, but she felt the opposite: that I was doing her a favor.

[Birgitta-A]

Hi Patti,
The only study about Revlimid (lenalidomide) and Dacogen (decitabine) I can find is still recruiting patients and we have no results: http://clinicaltrials.gov/ct2/show/N...domide&rank=37

Still I don't think Dean's doctor will continue with Dacogen because Dean had so severe adverse effects.

Perhaps Dean's doctor would let him try Promacta or Nplate for his low platelets before trying a new chemo. You could look at Kirby Stones personal profile and posts - he has a very caring doctor like Dean and has tried both these drugs for low platelets.
Here is a study about Promacta (eltrombopag) in MDS patients. Thrombocytopenia means low platelets: https://www.eventure-online.com/even...ongressId=5650

There are many studies about Nplate (romiplostim) in MDS patients: https://ash.confex.com/ash/2011/webp...aper36244.html

Kind regards
Birgitta-A