Ron's Watch-n-Wait Ends... New treatment Begins

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Debbie,
Thanks... I pray your husbands recovery will be quick and you'll get back to a normal routine soon. I can't imagine who could be my manager, but, it's a great idea! One good thing I set up which has been very helpful in getting the word out for those who want daily updates is through:

www.caringbridge.org

I've established a link specifically for my husband, and I try to journal in it everyday. I've received lots of remarks that people really appreciate being able to check on us daily... Ron's specific link is:

www.caringbridge.org/visit/rallison

Hugs, Cindy

[Helen Robinson]

Helo Cindy

I have just read through your thread and I wish to express my admiration of your determination in getting the best care for Ron. I wish you all the strength and support you need. Your worries make mine seem minute.

Best wishes

Helen

I

[Debbie W]

Thanks for the kind wishes

Glad to read that you have had a little help and that the chemo is finished and they can cut back on the fluids. My husband initially gained ten pounds, but came out after thirty days weighing the same. It is difficult to ask someone to take on the role of manager, some people step up more than others and anticipate the needs. Agree that a site where friends and family can check on the progress is a great idea.

Hoping that this next week brings little excitment in your world

Best wishes,
Debbie

[launch]

Dear Debbie & Helen,

Thanks for your posts. I did take advantage of Ron's oldest son coming to visit. Yesterday, I sneaked off and had dinner by myself at Red Lobster, verses eatting on the go... then, it felt so good, and we only have his son with us one more day, so, tonight, I gave "the guys" time together, and I went off to Olive Garden... "Safe Places"... I didn't feel like exploring in a new town... stick to what I know right now...lol.

So, I've had a bit of peace these past few days. Today was a great day for my husband. He's feeling so much better now that the chemo is finished and the fluids are being pulled from his body. The heart rhythm is normal again, but, they are still giving him meds to ensure it's controlled. And, other than his mouth having sores that are really bothering him, he has not (knock on wood) gotten sick at all. They gave him all of the nausia meds with the chemo, and amazingly, while hot food bothered him during the chemo... right now, he's able to eat a little soup, as long as it's not hot.

Also, they have something here called "Burn Shakes". They are very high protein shakes they came up with for Burn Victims. They have approx 20 grams of protein in them... practically a meal replacement. So, he's had one of those each meal and has been very content. He really likes them!

Okay, have a nice night... I'm getting some rest in a hotel tonight while his son stays with him at the hotel. He said he would come back in another week or so... I am thankful! He lifts his Father's spirits big time. Different from a spouse.... hard to explain.

Hugs, Cindy

[Neil Cuadra]

Cindy,

What a win-win-win situation that was! I'm glad you had a bit of quiet time to yourself.

[Debbie W]

Just read your update about your husband being transferred from ICU, you both must be so happy to be in a regular room. Day 11 was when my husband began running a fever, even though he had started the anti-everythings to support the lower counts, they joked with him that he was a day late. It only lasted the one day, minor infection in his line and then lungs. A few items that helped, a warmed blanket around the neck and shoulders and then a little warm apple juice to warm him from the inside out. Works fine unitl they begin removing the covers, then ice packs - rinse and repeat. Also he found the small neck roll pillow comfortable, something to look for in your spare time

So glad you were able to take a little break!

Hugs to you and your husband,
Debbie

[launch]

Thanks Debbie. My husband is on Day 10 right now... no fevers yet. He has a lot of crud in his lungs though.. and has had it for the past 5 day. They've been treating him with regular repiratory therapy mists, and antibiotics and anti-everything as you mention too ;-) He did not throw up at all, but, has developed very bad diarrhea. They're checking him for infection before loading him up with Immodium. Talk later.. I will contine to post how Ron's doing. Cindy

[Debbie W]

Hope today was a good day and that you can get some bits of rest in between, it is a long month. Cards, backgammon, puzzle books, DVD's - it gets a little tiring, but does help to pass the time.

Best of luck for tomorrow,
Debbie

[launch]

Ron is now on Day 14 of his induction therapy. He received a BMB today to check success of the chemo received last week. Unfortunately, this weekend is a Holiday weekend, so, we won't received results until next Tuesday late afternoon.

We're praying this first time around places Ron into Remission so we can make plans to go back home and relax while we also work to get Ron back up to normal function. He'll have some work ahead of him, and of course, we all know, being in the hospital period results in loss of muscle tone/strength. He's been inpatient ffor 5 wks over the past 2.5 months now. Along with being sick, just being inpatient is tough on the body!

What's been happening lately... during treatment:
About 3 nts ago, Ron developed the Riggers (Chills/shakes) vey bad with Fevers to follow. They did blood cultures and he tested positive with a very dangerous Bacteria in his blood. They treated him with heavy duty antibiotics and finally, a few days later, the episodes of Riggers & Fevers stopped and the bacteria no longer showed up in the blood. The doctor said, we're lucky Ron's alive with the type of bacteria he had. (I don't know the name of it, but, will inquire about it specifically)..

Yesterday we received a copy of Ron's blood counts for Day 14 of induction treatment: WBC 0.04 HGB 10.7 HCT 31% PLT 4 Ron has standing orders for infusions as needed. Obviously, the PLT were very very low during these counts, and Ron received PLT infusion right after results read. While on the cath, Ron's bladder bled some, and they checked, and yes, the plateletes were low. They transfused him and the bleeding stopped. Then, with platelets low again yesterday, Ron developed a nose bleed. He received platelets shortly after, as his PLT cound was very low.

Ron's very exhausted today... and was able to get some uninterupted rest finally this afternoon for about 2.5 hourse, believe it or not. I headed off several visitors (i.e. Physical Therapy, vitals checker, etc). All of these things could be slightly delayed... and let Ron rest some.

Okay, will check back again soon and let you know how the BMB results are Tuesday. Please keep us in your prayers, that the BMB is clear and we're on our way home soon! No More Chemo this stay!!!

Hugs, Cindy

[ann]

Cindy,
Keeping you both in our prayers. My husband had a BMB Thurs.and we will get results Tues. afternoon. He is feeling so good yesterday and today, had a transfusion Tues. and that always makes him feel good for a few days. Praying, waiting, hoping and trying to keep busy.
ann

[Neil Cuadra]

Cindy and Ron,

That bacterial infection sounds really frightening on top of how tiring it is for both of you to spend so much time in the hospital. We've had the same experience of battling the latest hurdle and having the doctor tell us in hindsight that we were lucky to get through it.

But it's not just luck. It's the care you're getting, the drugs that do their job, and the way you've both been advocating for yourselves. Good for you for putting up a "Do Not Disturb" sign, so to speak, so Ron could get some rest without the constant interruptions. The joke about the nurse waking you up to give you a sleeping pill isn't farfetched and you have to learn how to keep your sanity while dealing with hospitals.

Good luck with the biopsy results. The sooner Ron can go home, the better. There's nothing like your own bed when you need to recuperate.

[launch]

Neil,

You know, when you said it's not luck, you are so right! It's getting the correct treatment/meds, etc. I will never forget Birgitta's words in a recent post concerning Ron in the onset of him first having to go into the hosp a few months ago.

She basically said, she hopes they find a correct diagnosis so Ron can recieve effective treatment....

Thanks again for your post,
Cindy

[Birgitta-A]

Hi Cindy,
Yes, we can get so many complications - especially infections - when we have MDS. How wonderful that Ron now will have a SCT and perhaps be cured ! Hope his platelets will hold so he won't have more bleedings and that the BMB will show that the induction chemo has had very good effect.
Kind regards
Birgitta-A

[launch]

Hello Everyone,

This is a bit long, but, I wanted to update you on Ron's treatment. (He jus finished induction chemo - inpatient for 32 days). We continue to be so very thankful to our Lord God and Savior First! And, we thank all out the that have prayed for us. It was a tough treatment, and Ron ended up having a chemo/narcotic affected Bowel problem too. He had been in so much pain the past several months, he was on Oxycotin and Dialadid at regular intervals, and let me say, Ron is not a pain medicine taking type of guy... but, he was in a lot of pain, so, he was willing to take whatever might work....

Ron developed what is called Ileus Bowel condition, meaning, there were pockets of his bowel that was not moving, etc. I refer to it as "Sleepy Bowel". Well, they put a nose drain tube in and wouldn't allow Ron to eat or drink for 4 days. (Ice chips only). They gave him nutrients via IV (TP2). Meanwhile, they treated him with a med called Restoril (shot in stomach). He received the med for 4 days... but, it did work. He then was on clear liquid diet for 2 additional days, and then, he was returned to a normal diet. (I reminded him to take it easy, and he did...).

Well, there were several times, the doctors called me in the hallway to tell me just how sick Ron was, and that his recovery would take a very long time. Amazingly, a week ago last Monday, Ron called on the Lord, in our nightly prayer... (We pray out loud, in front of each other, one at a time, before we go to sleep). This night, I heard the "Fight Return" in Ron's voice. It sounded so wonderful... And, from that day forward, he started improving every single day! The Doctors were shocked each day! Ron started smiling again, and he told me he was feeling good again... No Pain, No Fevers, No nightly sweats! It's awesome and we continue to Praise God for the wonderful treatments available and the wonderful doctors, but, we always hold God first in all treatments.... for he truly had his hand on Ron, and it was very noticeable!

We just got home this past Wed evening at 9pm. It was so emotional when we drove up the driveway, as, there were times, due to Ron being so sick before he even made it in for Induction Chemo, we did not know if he'd be coming down that drive again..... we didnt' discuss it with one another, but, separately, during this go.... we both thought it at one time or another...

So, what next??? We've decided, for the next stage of treatment, Ron will remain at Winship Cancer Institute at Emory University with his original doctor, who, is the Chief of Transplant. We were very pleased to be able to be treated by Dr. List's team while in Moffitt. Now, that it's confirmed as transitioning from MDS to AML, and Ron has gotten through the induction chemo, we have to make a decision where we go next.

Especially over the course of the past few months, and especially over the last 32 days inpatient in Tampa, FL, we truly realize just how important it is to have a strong support system as we approach the next round of chemo treatments and eventually tranplant.

While in Tampa, we thought we'd have a bigger support group, but, we really didn't. We heard a lot of people say... "If only you were in Atlanta, we'd be there for you, but, Tampa's so far away..." But, I realize Ron was inpatient for 3 wks already in Atlanta, and we didn't really have a lot of help.

Once time, after the 3 week long, back to back hosp stay, 5 siblings came to help all at once. They did help with house stuff and it was appreciated, but, the amount of people at the house was overwhelming. Then, the next day, we had 3 more guests arrive.... Ron could not rest. They all meant well, but, looking back, it wasn't the right thing for us to agree to, but, they did ask first, so, it was our fault for not managing visitations. I didn't want them all at once, worried about Ron, but, he encouraged them all to come and said it was just fine. But, later, he complained about the chatter, noise, etc.

This time, I've taken charge of the visitors. I've asked for no visitors for at least 2 wks, except for Ron's Adult children. After that, I've asked for maximum 2 people at a time for now. I believe that's best for Ron... and we'll go from there. My focus is Ron's health First...

So, our next step???? Just enjoy one day at a time. We are such planners, but, it's so overwhelming to plan out life having such an unpredictable disease, so, we're going to just live one day at a time for now, and deal with what we need to at the time.

Today Ron had blood work, his WBCs had been 3.7 (3700) last wed with daily growth factor injections. Today, they were down to 2.4 (2400). HBG 9.7 and holding, HCT 29%, Nuetrophils are well over 50%. Ron was platelet transfusion depending after treatment, but, last transfustion of PLT was tues morning. Wed PLT was 15 (15,000) and today up to 25 (25,000), so, look like those are on the climb, which we're thankful over!

We meant with our Winship Oncologist next Wed to discuss the next stage in treatment. Ron is still very weak, but, getting stronger each day. He starts physical therapy next week to build up his endurance. Being inpatient approx 7 wks over the past 2.5 months has taken a toll on his muscle mass. He will be working on that over the next few months especially!!!

Okay, sorry so long, just wanted to catch you all up. Thanks for continue prayers and for the personal individual messages. (I truly feel loved!).

Hugs, Cindy

[Gene_In_Va]

Glad to see that Ron is holding his own and apparently feeling better. I will continue to keep you both in my thoughts.

Gene In Va

[Birgitta-A]

Hi Cindy,
How wonderful that Ron managed to overcome the ileus bowel condition and is able to fight his disease again!

Good that you have decided to ask for maximum 2 people at a time already because if/when Ron is getting a SCT you will have many problems without having to bother about no support or too much support.

Hopefully Ron's WBCs will hold with the daily growth factor injections and the HGB and platelets without transfusions!
Warm regards
Birgitta-A

[launch]

Birgitta,
They stopped Ron's growth factor injections that were helping the WBCs. But, who knows, because he was so responsive, perhaps they'll re-introduce it again later. For now, we're okay with 2.4 (2400), as long as they hold. We'll know more next wed when we return to Ron's Doctor and will let you know what they determine Ron's next step will be.

Cindy

[Birgitta-A]

Hi Cindy,
As you have read many of the members of this forum manage very well with low WBCs but Ron has already had problematic infections so he has to be careful. I am sure that you try to avoid all kinds of infections and if he is getting fever contact the clinic instead of taking some drug to make the temperature normal. Hope you have a calm weekend!
Kind regards
Birgitta-A
Neupogen 2 injections/week Sept 2007 - June 2010 when I got neutropenia due to Thalidomide and had to increase the Neupogen dose to 3 injections/week. Otherwise good effect of Thalidomide - HGB decreases 3 points/week instead of 20 before Thalidomide and platelets are 74 instead of 22.

[launch]

Hello All,
It's been several weeks since my last post. Ron is recovering very nicely. He has in-home physical therapy 3x wk, which has really helped him stay motivated. He's regaining his strength slowly for steadily. His BMB results from 10/04/10 showed clear BMB! YEAH! Complete Remission (CR)! So, next step, they normally would have started Consolidation Chemo today, but, the Doctor wanted to give Ron 1 additional wk for his body to recover.

Consolidation chemo will consist of only 1 type chemo and less than he received during induction. He'll receive it outpatient for one week only to start with, beginning Oct 25, 2010 and will receive it that week M-W-F beginning each day at 7:30am for 4 hrs. He will then be sent with some type of a pump, sort of like a fanny pack that will be programmed to turn itself on again that evening for the second deliver of chemo. As long as Ron does not develop any fevers & infection, he'll be outpatient. If fevers occur, he'll be admitted for close monitoring and care.

He'll be treated with Anti-fungals and Antibiotics, etc. and predisone eye drops due to the type of chemo he's receiving.

I'll let you know how he's doing. So far, the doctor is so very pleased with the blood counts. PLT 100, HGB 10.7, WBC 4.2 Neut 75%

Praise God for Ron's progress! Next step, SCT. They are currently in the process of checking his 6 siblings for a match. I'll let you all know how it goes! It's scarey but exciting, all at the same time. Please keep us, but, especially Ron in your prayers! I'm thankful that I've managed to stay healthy and have not come down with any colds or infections since Spring 2009. I'm so very thankful for that! That allows me to be with Ron so much!

Hugs, Cindy

[Birgitta-A]

Hi Cindy.
Wonderful with CR and good counts ! Hopefully one of the siblings is a good match.
Kind regards
Birgitta-A

[Al's Wife]

Cindy,

Great news about Ron. We'll sure keep both of you in our thoughts and prayers. My husband is 73 and therefore not eligible for transplant. I hope one of Ron's siblings will be a perfect match.

Linda

[launch]

Linda,

I know that online literature had an age cut-off of 60 yrs, but, our Doctor told us the age limit is not applicable any longer, that it's the overall health that is considered. Just so you're sure, if you've not already asked Emory, please ask them again... just in case something has changed.

Not that you want to run in there and get one, but, at least you'll be certain which doors are open and which are closed. Keep the Faith!

Hugs,
Cindy

[Mary4Mike]

Cindy and Ron,

I just read through your last few posts and Praise the Lord for the healing and strengthening he gave Ron in the hospital and the past few weeks. Your husband's history sounds a bit similar to my husband's with MDS RARS diagnosis (1999) and the 13 month response to Vidaza, no response to Revlimid (or Dacogen). Thankfully, Mike's never converted to AML, however, his cytogenetics were becoming abnormal. He was transplanted one year ago at the age of 64 and is now disease free. He has never felt better and I pray that Ron will have the same outcome. I also pray that one of his siblings will be a match. We turned this all over to the Lord and it made the journey much more peaceful.

I agree with your advice about age and transplant. We were told it depended on the overall health of the patient, not age. If there are other major health issues those would all be taken into consideration.

Please keep us up when you can on Ron's progress. Take care of yourself because believe it or not, this is taking huge toll on you also. You can't afford to get sick now.

Mary

[launch]

Dear Mary,
Your post is just what we really needed for encouragement! So similiar! Thanks so much for taking time to share your own testimony and praise! God is Good!

Hugs, Cindy

[Lori Patrick]

Cindy & Ron: CONGRATULATIONS! And, Mary, thank you for adding your experience. This is so helpful to all of us! "The Lord is My Shepard, I Shall Not Want..."

Lori