What a week this has been !!!
 

Hello Everyone;
What a week this has been. We went for Earl's Monday AM blood draw - and his platelets were down to 7 - and his Hgb was only 7.8. He was scheduled for an upper and lower GI on Tuesday - so they did a one unit transfusion of PRBC's - and a large 6 unit bag of platelets. Post transfusion his platelets were only up to 14, and we had to get him home - and give him the Mag Citrate to get the prep started. So - he spent most of the evening a lot of the night in the bathroom. Got to the hospital Tuesday AM - and they ran another bag of platelets in - and his count was only up to 20. The Dr. came and talked to us, and said that he was worried if something should go wrong, and he started to bleed - that he couldn't stop it - so it was finally cancelled at 4:30 PM - but the hema/onc had ordered 2 bags of platelets so they infused the second one and we finally got out of there at almost 8PM.
Yesterday - he was wiped out and spent most of the day in bed. He did ride with me to Lowe's to get our storm door ordered - but didn't go in.
Today - we went for his normal blood draw - and again - levels were in the pits. So - we got back to the hospital, and they took his temp - and it was elevated to 102.8. They called the Dr. and he said to hold the blood and give him some Tylenol - to help bring the temp down. It did get down to 100.2 - and they called the Dr. again - he said to wait for another hour - and also ordered a chest Xray and ordered a Urine C&S, and blood cultures. So - we had all of that done - and again - the nurse called the Doc. His X-ray came out normal, and of course - we have no idea of the cultures. The Dr. wanted him to go to the ER - and probably be admitted - he refused, and we came home. I gave him another dose of Tylenol and a Cipro - and he slept for quite a while.
So - that means tomorrow we will be back at the hospital for another long day stay of 2 units of PRBC's and one large bag of platelets, and of course the desferal. We are both exhausted, and I am getting very depressed watching him wither in front of my eyes.:(
Thanks for letting me vent, and sorry I haven't been here much lately.
Beth

Fever
 

Dear Beth,
What a terrible week for Earl and you!

As you know his counts can have decreased more due to an infection even if they don't find anything. One Cipro is not enough - perhaps he should go to the ER and start infusions of an antibiotic that hopefully will be effective.

To give Tylenol can be dangerous for us because our infections are not treated at once.

Hope this week will be better!
Kind regards
Birgitta-A

So sorry to hear that Earl still is not doing better. It has to be so very difficult for you Beth! It is fine for you to vent, you have to do that to help you get through this emotionally and physically demanding time in your life.

We are thinking of you, and wish we could do more to help you!

Just know you are in our thoughts and prayers right now.

Lots of hugs are being sent your way.

Patti and Dean

I am praying for you both!

Dear Beth,
I was hoping that Earl was doing better. You two have been through so much.
I pray that God will give you strength in the coming days and that He will turn things around for Earl.
God Bless,
Sally

Gosh, Beth, you deserve to vent. What an ordeal.

Hugs!

Everyone;
Thanks for the words of encouragement and support - and of course - your prayers mean more than I can ever tell you.
I am so worried about Earl - he just seems to be slipping away. Nothing he eats seems to stay with him or help put on weight - even when I 'doctor it up' with protein powder. I only hope that he will be able to get his chemo starting on the 22nd - hopefully he will be able to get 5 doses in. If he does, it will be the first time - his other 2 sessions were interrupted - either by a hospitalization, or by the hema/onc's associate giving the wrong instructions and holding treatment when he should not have. Too - this will also be the first time he will start the Revlimid. I am so hoping that something kicks in - I am getting to the point where I don't know where to turn.
I don't know whether to see if we can get in to see Dr. Sekkeres again or not - since when we say him before - he told us to stay the course - but that was when Earl was on Dacogen. It's not like Cleveland is just around the corner - but if it would help him - I don't care where I would have to go.
I must say - I was very disappointed in the MDS conference that was held in Pittsburgh last week. One of the presenters never showed up at all - they had the conference room set up for 80 people - and if 15 showed - I would be surprised - and 2 of those were the Dr.'s nurses. Also, the Dr. from Johns Hopkins left early - said he had a plane to catch, so you really couldn't get a lot of questions answered. Glad I took the bus down - at least that way, I didn't have to pay for gas, or for a discounted rate in the parking garage. And the hotel where it was held was only 2 blocks from the bus station.
Hope everyone else is doing better.

((((HUGS))))
Beth

Beth,
Have you considered NIH in Bethesda, Md.? Would not be too far away and if you have read my posts you know the faith I have in them. Can't remember if you have gone that route. Let me know if you would like the contact information.
God's Blessings and prayers are with you and Earl.
Sally

Oh, Beth, I am so very sorry to hear that Earl is not doing well. I too haven't posted much lately, mainly because I've just been holding my breath. I so hope something will help Earl's counts and especially help him to feel better.
I really have no explanation for why my husband is doing better. His numbers are AWFUL, he has no platelets but luckily the Amicar keeps him safe, at least so far. He did begin the Dacogen and has no favorable results. In fact his whites and reds have both tanked now. But he bounced back after our scare in August, so I'm just thanking God for each and every day. We have actually been on one trip and are supposed to go on another one this weekend. We shall see.
If someone had told me in August that this would have been possible, I would have never believed it. Don't get me wrong, Al's energy level is still not good, but he's able to get up and get around and he does still have a good appetite.
I know you've probably tried everything with Earl, but Al really likes Boost and when he hasn't felt like eating, he has at least drank a Boost. When our daughter was here she fixed him fruit Smoothies which he enjoyed but he doesn't seem to want one when I suggest it.
Anyway you are both certainly in our prayers. I know, like me, you are so hoping for a miracle.
Lots of prayers and hugs,
Linda

Sending lots of healing thoughts your way. So sorry things are not going well. Hugs.

Dear Beth and Linda,

We are so sorry to hear about Earl and Al. You are constantly in our thoughts and prayers.

Hope, strength, faith and hugs are being sent your way!

Patti and Dean

Gosh Beth, it's been awhile since I have been on - roller coaster - even though I've never been on one, I think I know now what the ride is like! I am so sorry to hear about Earl - he has had so much to deal with, are you doing ok? I do know exactly what you mean when all you can do is watch - not able to *fix* it. And Al to - I'm so sorry to hear what you two have been dealing with Linda. You guys along with Greg were the first I *met* here and have been such help, whether it's something that hubby has had to deal with or just reading and knowing we are not alone in this.

I am keeping you all in my prayers, and will be praying for your strength to. It's a lot to handle.

My hubby has been taken off docagen, he had 4 cycles and it seemed to have helped his white cells maybe, but not producing and red or platelets now and the doctor told us from looking at the second bmb his marrow is pretty much shot. We were looking at BMT in January but since the dacogen and or the MDS itself has started problems with his liver we are now going to transplant on Nov 5. Right now he is having blood transfusions once a week and platelets every 3 or 4 days. We have been so blessed in that they were able to find two perfect 10/10 matches for him. there is a chance of finding one but to find two is nothing short of a miracle in my book.

It is so hard watching him deal with all this and he has been so good, won't allow us to worry about it, says we are going to do what we have to and fight this thing. Our doctors are the best. We actually have everything we need available to us on the same floor of one hospital. Some I have heard from are going to different places for different treatments and tests - that must add so much to the stress of it all. The whole staff form the hem/onc when he was diagnosed in July to the BMT unit we now have started going to have been so great, and so open with letting us know exactly what isgoing on and what choices we have etc. I am sure that is much of the reason the Lee has been doing as well as he has been.

Again, I am so sorry the you are facing all of this and hope that soon every day will bring even a little ray of good with it.

Laura

10/10 match
 

Hi Laura,
Wonderful with the positive info about two perfect 10/10 matches :)!
Kind regards
Birgitta-A

Again; - Thank you all for your support and prayers - they have to help, I am sure. Earl is not having many 'good' days so to speak, and this worries me a lot. I am not used to him being so debilitated.:(

Sallly - I did get in touch with Greg and he sent me his contact information. I called the research nurse, and she emailed me a list of what they would need for preliminary evaluation, and I have started to get some of the information on its way. Hopefully, they will accept Earl into one of their clinical trials. We have a friend who lives in Laurel, Maryland, and they have offered to have us stay with them. So hopefully they will get things done and we will be able to be seen there.

On top of all this - he has thrush in his mouth and down his throat.:( I have been arguing with our PCP since June that he had something going on, but he didn't seem to think so. Monday, he had his Medicare Wellness Visit (Which I found out is NOT required - but glad we went) with the nurse practitioner at our PCP's office. I asked her to check Earl's mouth, and also look at the growing rash on his legs and buttocks (he was mortified that I would mention his behind) - and she came up with exactly what I had been saying - that he had a severe case of Candida Albicans - translated - MAJOR yeast infection all over him and inside his mouth - and I said that I thought Diflucan was in order to be prescribed - and she agreed. ;) In fact - she not only agreed - but instead of the one time dose - she gave him a reduced dose to be given over 7 days. You can see the improvement on his legs and buttocks, but his mouth is really bad. He also has ulcers which makes it difficult for him to eat. We got a scrip for Nystatin swish and swallow, and also one for the Magic Mouthwash, but so far, no real improvement. We have one day left of the Diflucan, and I hope something kicks in, because it is very hard for him to eat, let alone swallow, and Monday he starts his third round of Vidaza - and I hope this time he gets all 5 doses. Too - the Revlimid will also start after the chemo is over.
Hope everyone else is doing better, and know that you all are always included in my prayers.
((((HUGS))))
Beth

Hi Beth,

I had a routine gastroscopy and was found to have diffuse, widespread esophageal candida. I had no symptoms.

I was prescribed fluconazole which I had to take for over a year.

If Earl has it in his mouth and throat, it could well be in his oesophagus. Just something to consider.

Regards

Chirley

Chirley;
No doubt it is probably in his esophagus as well, but getting the docs to listen to me - and get him the needed medication is harder and harder to do. Right now - the next step for him is his upcoming chemo with Vidaza starting tomorrow. I know it will be a difficult week, as his Hgb level on Thursday was only 8.6, and his transfusion level is 8.5. So, I am sure by now - he is in the 7's somewhere. He is very weak, and has been sleeping most of the weekend - he doesn't have any blood - therefore no energy. And with it being difficult for him to eat - it makes it all the worse. He will start the Revlimid after the week of Vidaza. I am getting frazzled - just watching him waste away in front of my eyes - not being able to help him.:(
Hope things are better 'down under'. Take care.

Beth

Dear Beth,
I am so sorry for what your Earl is going through - and for the pain to witness it is causing you. I know it's just horrible and I am so very sorry to hear all this.
If NIH does accept you please feel free to contact me via e-mail or if you would prefer - by phone. We have been going to NIH since spring of 2009 and are leaving tomorrow to go again. I would be more than glad to help with any questions or give you any information that may be of help. It is a wonderful, healing place and on the cutting edge as well. Barbara Weinstein is extremely efficient - Earl would be in great hands! I hope they will accept Earl.
May God Bless you both and provide His comfort as only He can.
(((many hugs)))
Sally
shcalvert3@aol.com

Beth - I agree with Sally. NIH is wonderful! I spent a week there last fall in a GVHD study. Hope things get better for you both soon. Karen

Hi Beth, when you were nursing, were you aware it was this difficult to get medical personnel to listen to patients and/or their carers?

I certainly didn't. Being on this side of the fence has opened my eyes to the communication and other problems.

Regards

Chirley

Beth...I think of you often and do know firsthand of what you are going thru...It is the hardest thing in life watching the one you love so sick and failing in every way. The strength you have has kept your husband going.