Moffitt visit

[Al's Wife]

A quick post to say everything went as well as could be expected for a first visit - lots of new protocols to get used to. The good news is that we have decided to do the Eltrombopag trial and will get study drug today. We ended up having to stay overnight in Tampa because Al's platelets were 6000 yesterday. So they gave him platelets and we didn't get to hotel until 7:30 last night, after being up since 4:30 a.m. to catch an early flight. Al was exhausted and I was a little tired myself. We are hoping to get home later today and will post more. Thanks for all the well wishes.

[Sally C]

Hey Linda,
So glad you were able to go to Moffitt and that Al is starting Promacta. I pray he has a great response.
We'll be interested in hearing all about your appointment when you rest up a bit. Keep us posted.
God Bless,
Sally

[PattiDean]

Good Evening Linda and Al,

Good news about Al being able to take part in the study, bad news about needing the platelet transfusion, you had a very long day.

Hope you were able to get home fine and are resting up from your trip.

You are in our thoughts and prayers, and as Sally said, we look forward to hearing about your appointment with Moffitt when you are able to post.

(((HUGS)))

[Al's Wife]

Thank you, Patti and Sally, for the hugs and support. We got home about 8:00 p.m. last night. It seemed like a really long week and Al and I are both exhausted. If I'm this tired and I don't have MDS, I can't imagine how he must feel. But, as usual, he was a real trouper. He began taking the Eltrombopag (Promacta) last night. He takes two 75mg pills at the same time every day for a total of 150 mg. We are hoping to get our labs done locally every week and will only have to travel to Tampa once a month. He will get a bone marrow biopsy after the first month, second month and fourth month.
And of course we got a letter from the insurance company today telling us that since we have decided to go Out of Network for treatment that we would be responsible for additional charges, blah, blah, blah. But you know at this point, I have other things to worry about.

Dr. Komrokji and Dr. List work together at Moffitt. Before coming in to see us Dr. Komrokji had discussed Al's case with Dr. List and they concurred over our options. We decided to go with the clinical trial now and IF there is no improvement to perhaps try Dacogen. Dr. K also mentioned some other things that are coming along over the next six months. He said we are just buying time now, hoping to get the platelets up and the blasts down.

He did say that other than having MDS, he felt Al was in very good shape for his age and that he would probably recommend induction/consolidation down the road if things go south and Al goes into AML which he thinks is a strong possibility. He also mentioned that transplant is not totally out of the question even at Al's age. But he cautioned that it would be a last resort and better than the alternative. There was also discussion about quality of life and risks versus benefit, but overall it was a good discussion and we really liked Dr. Komrokji. In fact we found H. Lee Moffitt Cancer Center to be probably our favorite of all the treatment centers we've been to (NIH in Bethesda, MD; Emory Winship Cancer Center in Atlanta, GA; and M. D. Anderson in Houston, TX). Most of the people seemed friendly and caring and the wait times (with one exception) were much better than other hospitals.

When they did the labs on Wednesday, we learned that Al's platelets were down to 6,000 (they had been stable at 16,000 for the last two months) and they told us he would have to have a transfusion and that they would place the order and we were to go to the Infusion Center at 4:00 p.m. So we saw the doctor, had to go back to have more blood drawn, and then went to the cafeteria. At 4:00 we went to the Infusion Center and that's when we learned that they didn't order the platelets until you checked in at the Infusion Center. Grrrrrr We had wasted a couple of hours, which meant by the time we signed in, the platelets were ordered by the Infusion Center, and delivered two and a half hours later, it was 7:30 p.m. before they finished administering the platelets and we left the hospital. The next time we'll know - go check into the Infusion Center before you do anything else when you learn you have to have a transfusion!!!!

We stayed overnight in Tampa because the clinical trial coordinator for this particular trial was not there Wednesday afternoon when we saw Dr. Komrokji. So we had to be back at the hospital on Thursday to meet with her, sign the consent, go over all the other "stuff," have an EKG, another blood draw (transfusion only brought the platelets back up to 16,000), and get the drug to bring back home.

We might be entering a new norm and might have to get more platelet transfusions. The doctor seemed very surprised that the only time Al has needed blood or platelets was during the Sapacitabine trial last year. It makes me nervous because they really cautioned us about the dangers of his platelets getting so low - bruising, bleeding, bumping his head causing hemorrhaging, etc. We really needed something else to worry about; right?
And of course my husband, despite his illness, tries to maintain a fairly active lifestyle albeit different than before MDS. He loves antique cars and loves to work on them and still spends a good bit of time in his shop when he feels like it. I think this hobby has been a wonderful way for him to keep his mind off his illness. He gets in that shop and is in his own zone, thank goodness.

He's had to rest a lot this week. In fact this afternoon he lay down on the sofa and napped, something he seldom does.

I'm so hoping this trial will work some wonders for him. I'm sorry if I've rambled. I guess you can tell I'm really tired.

Thanks again for the support.

[PattiDean]

Hello Linda,

Thank you so much for your post, it was a very busy two days for you and Al, no wonder you are exhausted, but thankfully it sounds like you were very happy with your experience, and Al gets to take part in a trial.

That isn't good news about his platelets though, or the letter regarding your insurance.

Dean just began his Dacogen treatment and is doing fine, no side effects. He will also be taking Revlimid.

Dean's platelets are 14, and his blood counts are low, so tomorrow he has to go to the hospital for transfusions of blood and platelets. After his chemo treatment today, we had to go to the hospital for type matching, it was a long day. Sunday our oncologist is going to meet us at his office and give Dean an injection of Neulasta. Monday morning an appointment with the VA regarding Dean's drug coverage, he receives his medications through the VA, and we have to check to see if they will cover the Revlimid. I think you are right, this is our normal now.

Our husbands are troopers, I don't think I could be as strong as they are, if it were me.

I am hoping the trial shows promising results for Al, you need good news. You have not rambled. Thank you so much for telling us about your visit to Moffitt and telling us your experience. Is Al feeling better? He had a fever before you left.

You both are in our thoughts and prayers. (((HUGS)))

As Sally always ends her posts, God Bless.

Patti

[Sally C]

Hey Linda,
I'm so glad you had such a good experience at Moffitt. You really needed that.
With the issue of ordering the platelets, that's part of learning the ropes. They are such a precious commodity they wouldn't ever order for Don until he was there. They don't want to take a chance of their being wasted. But as you go along these are the types of things you learn that makes dealing with all this easier in the future. The whole thing is a learning process.
You are right you need to worry about low platelets. At the same time the body is an amazing machine and can adjust to very low counts really well most of the time. Don's got as low as 4,000 and he never had a nose bleed, gum bleed or anything like that. Our oncologist has patients who live with platelets at 1,000 and
do very well.
They are starting Al off with the big guns so he may respond faster than Don. They started Don off at 50mg. and upped it every 2 weeks until he reached the 150mg. max dosage.
You both really did have long days - it kind of goes with the territory of infusions but hopefully that will change in the near future. At least you are doing something proactive and that has to help from a mental standpoint. Just take good care of yourself.
Keep us posted as I know you will.

Hi Patti,
So glad that Dean is tolerating Dacogen so well. And I hope things will go well at the VA. If I haven't before, please thank Dean for his service to our country.
As I mentioned to Linda, when transfusions are involved they do cause very long days. But I hope this will change for you as well in the near future.
I know you will keep us posted.
We are heading to NIH on Monday for a scheduled appt. This will be the first CBC that Don has had since coming off Promacta so should be interesting. They are also going to do a bone marrow biopsy. This is part of the protocol and I don't expect any surprises as he seems to be doing well. Will let you know if anything comes up out of the ordinary.
God Bless to all,
Sally

[PattiDean]

Good evening Sally,

Dean received his blood and platelet transfusion today. We were at the hospital for almost five hours. Tomorrow we drive to the oncologist's office so the doctor can give Dean an injection of neulasta, I believe it is for his WBC. I told Dean he must be special that a doctor is meeting him on a Sunday morning alone.

The only problem Dean is having regarding his treatment is twitching and sleeplessness. He receives a steroid before getting his Dacogen, so maybe that is what is causing that. At least it is making Dean hungry, he is eating all the time, so that is good. When we see the oncologist tomorrow we will ask about the twitching. Also, Dean's blood pressure is high for him 140/90.

Monday is the VA, hope Dean can get started on Revlimid soon, the doctor wanted him to begin on Monday, but that doesn't look possible, it may be a little while longer. Apparently there is a lot of paperwork for this drug.

Dean says he served in the military so long ago, he forgot what he did. We look back at those pictures in his uniform and he was a skinny, little kid. Where did the years go?

We will be thinking of you on Monday at NIH. Please keep us posted on how Don is doing. You will be in our thoughts and prayers, that's for sure.

God Bless (I like that) and (((HUGS)))

Patti

[Sally C]

Hey Patti,
You are correct that the Neulasta is to bring up his WBC. I hope he responds as well as Don did - his whites were the first to show any movement and he always responded well to the shot.
I would imagine the steroids they give Dean before his transfusions could hype him up. If they give him Benadryl that makes some people antsy as well. Maybe the doctor could give him (and probably you too) a mild anti-anxiety med. You both need your rest and with all that's going on it's not easy to shut the mind down.
Thank you for your well wishes at NIH. We'll go up tomorrow and appt. will be Tues. It will take a couple of weeks to get the biopsy results back but since Don is doing so well I don't think there will be anything unexpected to show up.
I'm glad you like my "God Bless". I like your (((hugs))) too.
I always take my laptop out of town so if you post I'll see it.
I hope Dean has a good week and you too.
God Bless and (((hugs))) ,
Sally

[PattiDean]

Hello Sally,

Dean received his Neulasta injection this morning. We met the oncologist/hemotologist at his office for the shot. Tuesday Dean returns to the office to check his counts after the transfusion and injection. Fingers crossed and lots of prayers that it will be good news! Thank you for telling me about Don's experience, that gives us a lot of hope.

The doctor also wrote a prescription for Ambien to help Dean sleep, and another prescription for antibiotics, I guess because his immune system isn't very good at the moment.

Dean is feeling a little down today, but I keep reminding him that it has only been two weeks since we found out his dx, it is going to take a little while to get use to this new routine.

Do you drive to the NIH? We will have you in our thoughts, and will be saying a lot of prayers for both of you. Look forward to hearing about your visit. Safe travels.

(((HUGS)))

God Bless!

Patti and Dean

[Al's Wife]

Patti and Sally,

I've been reading the boards but just too tired to post. I'm so happy that Dean is tolerating the Dacogen and I can't believe he found a doctor who will go in and meet him on Sunday. We should be so lucky. I can't even get Al's local oncologist to call us back. I have been trying to get in touch with him since last Friday, when I hand carried a letter stating that he would need to get his labs done locally and sent to Moffitt. I have called his office, left word with his nurse, the receptionist, and an email, and it is now Monday afternoon and still NOTHING! We still have the option of going to Quest for the labs, but what if Al needs platelets. We have to have a local doctor to order those. If we don't hear anything tomorrow, I'm going to try and get in touch with the doctor at Emory that we were referred to earlier and see if he will take over Al's care locally. I just can't keep hanging like this, it's driving me crazy. Not to mention that Al is feeling awful. He lay around all weekend, taking several naps a day, and just not himself. I don't know if his body needs time to adjust to the new medicine, or if he's just depressed, or what, but he's certainly not been himself. He's also run a low-grade fever off and on. Sally, did Don have any problem feeling worse when he was on the Promacta?
Okay, enough about us.
How are y'all doing? Sally, I hope Don got a good report at NIH. I know you won't have the results back for a few weeks but I'll sure be praying for good news. Hope you have a safe trip there and back.
Patti, I'm sure you look better with your haircut - at least I bet you feel better. It's hard not to get so wrapped up as caregivers that we forget about ourselves but everything you read says that we have to take care of ourselves. If you get a chance to go to one of the Conferences put on by the Leukemia and Lymphoma Foundation you should try to go. They are very well done and give a lot of helpful information. We went to the one in Atlanta this year and while Al wasn't receptive to it, I learned a lot. The only way I got him to go is that his doctor from Emory was one of the speakers. But that is how we met Dr. Komrojki, his doctor at Moffitt, he was also one of the speakers and talked a lot about research and new treatments.
Just wanted to check in and tell y'all I really hope things are going well with all of you - Sally and Don and Patti and Dean - and with all our MDS friends. God bless you all. Lots and lots of HUGS!

[Sally C]

Dear Linda,
I am so sorry that you are having such a hard time with the doctors and that Al isn't feeling well. You need to get a doctor that is accessible for sure.
Don really didn't notice any change in how he felt when starting Promacta - but then he is on so much medication - 3 heart meds, Prednisone along with others. When he feels bad or tired it's really hard to pinpoint which med may be the reason. But as I stated before - they really started Al on the max dose right off the bat so he certainly could feel the affects of the Promacta where with Don they did a slow increase every two weeks..
Patti,
I forgot to ask about your hair. I know that must have made you feel better - and so much more beautiful for Dean!
We are in Bethesda - had an uneventful trip up and don't expect any surprises. Won't get biopsy results for a couple of weeks.
Please know I'm here for the both of you and anyone else on the forums I may be able to help. shcalvert3@aol.com.
God Bless and (((hugs))),
Sally

[milliken2]

Hello Ladies;
It has been a while since I posted - mainly because the PC broke - and went into the 'computer fix t guy'. Really need a new one, but with all that has been happening here - I haven't even had the time to see what is out there. Got the laptop up and running - haven't had it going since we left Florida in March.
Anyhow = Linda - I am glad you and Al had a good experience at Moffitt. Also - regarding the platelets - I know Earl's have to be irradiated to make sure there is definitely no 'nasties' present - and they always come up from Pittsburgh. He has a blood draw twice a week - and we fo to the local in network hospital for that - and the results are faxed to our hema/onc, and he orders the blood. I don't know what is happening to Earl's blood and platelets, but he had 2 units of blood on Friday, along with the BIG bag of platelets that actually contain 5 units. He was in bed most of Saturday, and only up to his chair and back to bed yesterday.
Last week, he had aother BMB in the Dr.'s office - and I thought I would have to peel him off the celing. He actually screamed, and squeezed my hand so hard - it's bruised. We went for his blood draw this AM - and he needs 2 more units. We got a rush appointment to see the Doc - so we wl be there at 10:00 AM - then see when they schedule the transfusion. This will make 156 pints of blood since the middle of August last year when I started counting.
He has finished his 4 session of Dacogen, but don't feel like it is working, as his counts keep dropping, and the transfusions are even more frequent. I know they told us between 4 and 6 sessions, but I would have thought there would be some improvement by now. He can't take Revlimd since one of the side effects is clotting - and he has already had 3 clots in his legs, one in his arm, and one in his suerior mesenteric artery (the one that feeds the bowel) and he actually had a gangrene bowel and lost over 13 1/2" - but did not have to have a colostomy.
Sorry for the ramble ladies - but I guess I am gettng kind of stressed here doing it all on my own. At least I got the grass mowed before the thunderstorm hit the other day.
Much luck to each of you and your husbands as we travel this terribly rocky road.

Beth

[Al's Wife]

Beth,

Thank you so much for all the great information, especially about the in network hospital for transfusions. That makes sense. I'm thinking our local oncologist is upset with us for going to Moffitt and that is why he isn't returning my calls. He's always been supportive before when we went out of state for treatment, but this time he recommended a trial somewhere other than Tampa, and it would have required 72 hours IV in the hospital each month and staying close to the hospital out of state for several more days. We opted to try a different trial and chose Moffitt. So that might be why he's being a jerk. But if I don't hear something today, I'm definitely going to find another local oncologist. This is getting way past ridiculous!
I am sorry to hear about what you and Earl are going through. Believe me, I know how hard it is to be strong and try to keep on a happy face for them, and always in the back of your mind (even though we try not to think this way) what IF this doesn't work.
I hope the Dacogen kicks in soon and Earl's numbers begin rising. When Al was first diagnosed, they had him on Vidaza right off the bat, and he didn't improve. It was so frustrating each week to get those disappointing numbers. Every time they draw labs, I'm bugging them for a copy the minute it's finished (and of course it takes awhile to get the results so I have to learn to be more patient) and my stomach is in a knot until I see the numbers.
And Earl's BMB reminded me of Al's first one, which is the reason he now says, "I won't have another BMB without sedation." He has a VERY high tolerance for pain, so I knew it was bad when he said that. And with one exception, he has had sedation with all the rest and it has been so much better. Except for the one at M. D. Anderson where they used a different kind of sedation and when it wasn't working (they were in a hurry because it was quitting time - if you know what I mean) they zapped him with more. He was wide awake when they wheeled him out, passed out by the time we got in the car, slept through me getting him into the motel (not sure how I did that), got him into bed, and he didn't remember anything until the next day. That was not a good experience either.
Well, now I'm rambling. We're all in this together, so hang in there. I know it's hard on you. But just take it one day at a time and remember you are only one person. We probably didn't appreciate our husbands as much as we should have before they got sick. I know Al still tries to bring in the groceries, take the garbage out, etc. But when he's not looking, I run around trying to do it, so he won't have to. I don't think I have him fooled.
But I am fortunate that he does tell me every day how much he loves me and appreciates me. Having MDS has brought us closer. I mean, how could it not when we spend so much time sitting together in the doctors' offices and hospitals! lol
You've got to find humor where you can; right?
Hope all of us have a good day. Lots of prayers and HUGS going out to all.
Since writing the above, Al is up and called our local oncologist's office himself. They said they were in the process of setting him up for labs, just hadn't got around to it. Oh, well, at least he accomplished something I couldn't - an appointment tomorrow at noon! So we'll be getting the labs he needs for the clinical trial faxed to Tampa and if he needs platelets, hopefully, local oncologist will set them up for in network hospital.
Linda

[Sally C]

Hey Beth,
I think the title to your post sums it up - Us and our husbands.
Am in Bethesda right now so not much time to write.
I wish you and Earl well. And Linda, Al, Patti and Dean and all others.
We're all in this together and it's wonderful to connect to people who understand the situation as no one else can.
God Bless,
Sally