I will be away from the forum for a while

[milliken2]

Hello Everyone;

I am going to be away from the forum for a while. There are just too many things I am dealing with, not only with Earl, but myself as well. I need to take care of some things, but know that each of you will always be in my thoughts and prayers. Take care each of you.

((((HUGS))))
Beth

[Sally C]

Dear Beth,
You take good care of yourself and Earl. You will be missed and prayed for.
We're here if you need us.
With love and (((hugs)))
God Bless,
Sally

[PattiDean]

I agree with Sally, Beth. We will miss you, but understand you have a lot going on right now.

Like Sally said, we will be here for you when you need us.

God Bless and lots of hugs.

Patti

[cathybee1]

Take care, Beth.

[Al's Wife]

Prayers going out for you and Earl. Please take care of yourself.
God bless you.

[gramous]

take care of you. We are here for you if you need. hugs for you two. béné

[milliken2]

Hello Everyone;
First, I want to thank each of you for your love, prayers and friendship. This has been a difficult 2 weeks for us. Earl was in the local hospital - they thought he was having an M.I. in the Dr.'s office - and off we went by ambulance to the local hospital. No heart attack - Thank You God - but then again - chemo had to be stopped because they don't do chemo here. Did other testing - and thought he needed a cardiac catheterication. But, I didn't lke his numbers, and refused to have it done here. So, after a lot of arguing - last Thursday night - he was sent to Allegheny General in Pittsburgh. They all looked at him - an in essence said "Why did they send you here?" To which I replied - I didn't trust the local hospial. But, as iI already knew - his platelet count was only 13,000, and his Hgb was down to 8.1 - amd they said "We aren't going to touch you with these numbers - it's just too much of a risk" and sent him home on Friday - we weren't even there 24 hours. He laid around all weekend - no strength
Monday, we had an appt with the hema/onc - to discuss how he was going to continue treatment, and since he had such a bad reaction to the Vidaza shot, we did decde to use his port. So, Tuesday & Wednesday he had his chemo. We got there on Thursday - and he had spiked a tem to 103.7 The nurse showed me the thermometer, and then talked to the Dr. They decided to give him the chemo anyway - and then we again went to the local ER for antibiotics via the port. They did 2 sets of blood cultures in the office, and repeated them in the ER. He was admitted to the floor - for neutropenic fever - and got 2 more units of blood and another 6 bag unit of platelets. They again repeated the cultures around midnight -but on Friday night - he again spiked a temp of 102, and was shaking uncontrollably. Said he was very cold and wanted me to pile on the covers. I put one on, and tried to explain to him that the shivers are useful for one of 2 things - to really try and warm you when you are cold - but in his case - to try and bring the fever out to the outside of his body - and that he didn't need tons of blankets. So - he missed his Friday cemo - and the Dr. wants him to come to their office fr 2 weeks of Neupogen injections. Like I told him - I am used to giving the injections - and since it is a covered VA drug - all they would have to do is fax the scrip and the lab work(Ialready had the lab work there) to the VA - and they would send me the Neupogen. I just don't think the Dr. wants to do without all of those 'offica calls' that he can charge for.
So - I am off to the hospital now to see if anyone has been in over this holiday weekend.

And to that end - I hope each of you have a Wonderful Labor Day - and again - thank you to each of our service men and women - past and present - so that we do have a free country to labor in. !!

((((HUGS))))
Beth

[Birgitta-A]

Dear Beth,
Now we hope that antibiotics, chemo, txs and Neupogen will have positive effects so Earl will feel better!
Kind regards
Birgitta-A

[PattiDean]

Oh Beth, you and Earl are going through so much.

I am not a nurse like you, but I can tell you that in the beginning of August Dean was in the hospital because his counts went so low, WBC 0.3, RBC 2.0 PLTS 3 and HGB 8.1. and he also developed an infection.

He was on Neupogen for two weeks, and finally after ten days of injections his numbers went up dramatically. After his second cycle of Dacogen and the Neupogen his PLTS were 140, WBC 6.0, HGB 11 and RBC 3.7.

I hope Earl can have the same results.

Dean is on Dacogen, begins his third cycle on Tuesday, and Revlimid, 15 mg. and doing really well. Such a good change in four weeks.

We will keep you and Earl in our thoughts and prayers.

[cathybee1]

Oh, I wish Earl were having an easier time. Yes, holiday weekends are the worst! Sending prayers your way that the Neupogen will turn things around quickly.

[Chirley]

Hi Beth, when I was on Vidaza I had fever every time from day 2 onwards. Every time I would have blood cultures and every time they were negative.

In the end the doctor put it down to being a drug reaction but because I often had 0neutrophils he didn't take any risks and I was always supplied with a take home pump of antibiotics every day of my Vidaza with an extra antibiotic given while I was at Daycare for the infusion.

I don't know if this drug reaction is common or not but that's certainly what happened to me.

Hope things get better for you and Earl soon.

Regards

Chirley

[maria&lola]

Beth--good to see an update tho I am sorry that Earl is still having a hard time. Hope the treatments make the difference. Do take care and we will keep you both in prayer.

[milliken2]

Hi Everyone;
And again - thank you for your concern and prayers for sure. Earl has had 5 units of PRBC's while in the hospital, and 3 bags of platelets - with 6 units each. All of his blood products have to be irradiated due to his other issues - and I think that is half the problem - I think the irradiation is actually killing some of the cells. He got one unit of PRBC's tonight, because when I asked to see his lab work - his Hgb was at 8.5 - which means by tomorrow, he would be down in the 7's range - and then it really takes him a long time to get any strength back. I still had to argue for that one unit - and like I told the nurses - giving him one unit is like putting a bandaid on a gash - whereas if he gets the 2 units - it's at least sutured. But, the Dr. wouldn't budge.
The infectious disease Dr. knows absolutely nothing, and wants to test, test, and test - all cultures are still negative, and no matter how many times you look at him - his condition is what it is - and she hasn't a clue. She wants him to go to therapy for his legs - using mast type stockings that pump the blood back up his legs, but these are much smaller and more uncomfortable. He refused them last night and tonight - and I finally got the pump from the end of the bed, unhooked it - and put all of the extra things on the small area where the nurses chart in the room. If he gets up at night to use the bathroom - they are a trip hazard, and that's all I need is for him to break a bone.
I was just sitting here - and began to think of the meds he has gotten while in the hospital - and they absolutely forgot his Marinol - 10 mgs/ twice a day to help his appetite. i wondered why he seemed so listless, and didn't seem to have any strength - he's not eating enough to gain anything - in essence, he's only eating enough to keep all of his vital organs working. But - I have augmented with some sweets - and junk food. I know it's not protein - but I figure something is better than nothing.
I end up spenging all day there. Tonight, they weren't going to give him his Neupogen injection - and when I asked why - I was told the Pharmacist didn't think he needed it. So - of course - he and I had a 'conversation' and Earl finally got the Neupogen. When the hema/onc. came in yesterday, I asked him if these shots he was getting here in the hospial would subtract from the 10 doses he wanted him to have after his chemo - and he said - NO - he still needs those in addition to what he is having here. But, that makes no sense to me - he has gotten 5 there - so I would think he would only get an additional 5 - but who knows. We will have to wait for tomorrow and see what happens. His WBC's have come up a little, and his PLTS are holding at 14,000 - still way low for both - but better than they had been. I just hope the Vidaza begins to kick in.

((((HUGS))))

Beth

[Birgitta-A]

Hi Beth,
Good that Earl's WBCs are a little better and the platelets are holding! That is a positive sign because infections will decrease all counts.

As you know it is very common that they never find the bacteria, virus or fungi that causes infections in patients with neutropenia. They test everything initially and then they have to start treatment at once. Then the antibiotics make it hardly impossible for the bacteria to grow in test tubes even if the antibiotics not really kills the bacteria in the patient.

Clinic and other examinations like X-ray, MR and so on can show where there is an infection.

Kind regards
Birgitta-A

[PattiDean]

Beth,

You are always here for everyone on the forum when they need help, I wish I could be there to help you and Earl.

It is good news to hear that Earl's WBC and PLTS have improved slightly, but I know he still has a long road again of him.

You are both in our thoughts and prayers.

God Bless.

Patti

[milliken2]

Briggita and Patti;

Thank you both. Briggitta - he has had the Xrays - CTscans, etc, and they all came up with the same thing - no sign of infection. When we were in Florida - they said he had Gram Negative Bacilli - and treated it with the antibiotics there, and with the home ifusions which I did. I mentioned this to the hema/onc - just as an aside - and he seemed to just think it was a neutropenic fever. Earl is getting very discouraged - and to tell the truth - so am I. I know I am exhausted and not eating right - but I just don't have the time. These few moments here on the forum at least help me vent - and I think that is just as helpful.

Patti - I wish I could do more - I know I haven't been as attentive to each of you, and I am sorry. I wish you and Dean well.

((((HUGS))))

Beth

[Birgitta-A]

Hi Beth,
Neutropenic fever is very dangerous - as you know the patient can get septic fever. Good that Earl is examined and getting antibiotics together with Neupogen. Now we can hope that the antibiotics will have effect - otherwise they will have to try other drugs.

Hope you both will manage to eat and get some strength!
Kind regards
Birgitta-A

[Al's Wife]

Beth,

I so feel your pain and exhaustion. Been there, done that - am still doing that, as a matter of fact. The past three weeks for us have been a blur too. I've been too tired to post but have been keeping up with how everyone is doing. I am so hoping and praying that Earl will respond to the Vidaza and things will turn around.
And even though the doctor only gave my husband a 3% chance that the Dacogen would help, I'm still holding out for the miracle. He finished the first five days last week and now will be off drug for 28 days, and he has had no bad side effects, thank goodness. He goes for labs and doctor visit in the morning.
Please please take care of yourself. You will be no good to Earl if you fall ill. I really didn't realize how exhausted I was until our oldest daughter quit her job in Colorado and came home to be with us through this phase of Al's illness. She is a daddy's girl and feels guilty that she has not been here with us more these last two years. But none of us thought his disease would progress this fast. So we have been blessed that she is able to be here with us. And I have learned to ask for help, something I was never able to do in the past.
Take care and God bless both you and Earl. And please know that you have given so much of yourself to help those of us here who don't understand this disease and your help and suggestions have enabled so many of us to be better caregivers to our loved ones.
You are all in my thoughts and prayers.

[milliken2]

Brigitta & Linda;
It's midnight, and I have only been home a few minutes. Earl ended up getting another large bag of platelets tonight, they dropped to 10,000. But, on the upside - his Hgb stayed above transfusion level - just barely at 8.9, but his WBS'c have increased from 1.0 to 3.3, which is a blessing for sure.
I had talked to the hema/onc's office this afternoon, and they said the Dr. was going to stop in after office hours. He never got there before 11:30 PM, and I had to get home to feed Hannah and let her out. I just called the floor - and of course - he has not showed up. I did leave a message with the charge nurse that I wanted to be called with Earl's blood levels in the early AM so that I could be prepared.
Problem is - the admitting Dr. said he could go home today, but of course - that was before we knew the results. He is getting depressed just being there, and he hates the hospital food. Tonight - around 9:30 or so, he was hungry for a taco - so I ran up to Taco Bell and got him one - and he ate it. I figure anything is better than nothing. He also ate some cheese corn, and a couple pieces of candy.
I found out that they were not giving him his marinol - he hadn't had one dose since he was admitted last Thursday - so not only is the hospital food not that great - his appetite is down. He did get a dose tonight at 10:00 PM - but he can't get anything to eat, even if it does kick in.
As for me - I am eating on the run, and living on coffee. Thanks goodness the nurses on the floor let me in their break room, and I can get a decent cup of coffee (but I bought them a pound of Dunkin Donuts coffee) so it is fair both ways. When the 3:00 shift comes on, I make the coffee about 3:15 so that when they get out of report - it's ready for them. I did the same tonight for the night shift.
My hopes that each of you are getting better, and know that all of you are in my thoughts and prayers.

((((HUGS))))
Beth

[PattiDean]

Hi Linda,

I have been thinking of you and Al.

Dean's counts went down real low after his first cycle of Dacogen, but the doctor gave him Neupogen for two weeks, along with transfusions of blood and platelets. At first it didn't seem as though anything was working, his numbers stayed low, but by the 10th day of Neupogen and transfusions, his numbers began to increased dramatically.

He is now receiving his third cycle of Dacogen, and he has not had any transfusions after his two weeks on the Neupogen, his counts have been very good and no problems with the Dacogen either.

I do hope the same for Al. Dean hopefully will get a BMB in a month and we will know if there has been an improvement. When he was dx the end of June we were told he had RAEB2 with 17% blasts and a poor prognosis, today Dean has gained back the twenty pounds that he lost, and though somewhat tired, he is able to begin going out and enjoying our lives together. We didn't think that would ever happen again.

Beth, i agree with Linda, you do give so much of yourself to others on this forum.

You are in our thoughts and prayers everyday.

Lots of hugs are being sent your way.

Patti and Dean

[Birgitta-A]

Hi Beth, Linda and Patti,
Hopefully Earl, Al and Dean will improve on their treatment!

Earl's WBC is really very good - the infection seems to be sensitive to the antibiotics he is receiving.

Good that Al has tolerated Dacogen without adverse effects so far!

Give my congratulations to Dean! He has responded well and fast.
Kind regards
Birgitta-A

[milliken2]

WOW - What a week - or should I say almost 3 weeks this has been. Got Earl home from the second hospital stay late on Wednesday night - after receiving 2 units of blood and the desferal. We were here yesterday - and he slept in till almost 10:30 AM - but I figured it was good for him since he hates the hospital beds. He slept in a bit this AM - but just wanted to be home - with Hannah and me - and he actually looked and said he felt better.
We left later than usual for his blood draw, finished that, and decided to go have a late lunch/early dinner. We had just been served our salads when my cell phone rang, and it was the hema/onc's office saying that his platelet count was only 11,000, and that he needed to be transfused immediately. But, he wanted to eat first, so we did. Then off to the ER for his eval and finally admission to the floor. They said they don't hang platelets in the ER - but they did a couple of weeks ago. Not this time. Got up to the floor where he was on Wednesday - and everyone was surprised to see him so quickly. Thank goodness the charge nurse and I have a good rapport. I got him settled in his room, then went to talk to her. Found out that the ER doc had never consulted the hema/onc - and that no platelets had been ordered to that point. She called him - and of course, he ordered them. Problem is he has to have special platelets due to his antibodies - and they also have to be irradiated, and come up from Pittsburgh. I just got off the phone with the night charge nurse - at midnight - and they still weren't there. I am sure he is one unhappy camper
I think I should own stock in this hospital ! ! Hope everyone else is doing better.

((((HUGS))))
Beth

[Sally C]

Beth,
I don't know what Earl would do without you. You are a true angel of mercy.
I hope things will start looking up for Earl. It's just one thing after another. I know you both must be worn out.
Take good care.
God Bless and (((hugs))) for you and Earl,
Sally

[cathybee1]

I'm glad Earl got to have a nice meal at least. He is lucky you are in his corner.