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

[launch]

I wanted to update you all on Ron's progress:

Consolidation chemo started this past Mon (Oct 25th). Ron will receive 2 hrs in morning and 2 hrs in evening. The type chemo is Cytarabine. He is receiving 240ml both morning and night. The fanny pack dose is working out pretty nicely. Ron leaves with the chemo pack hooked up to central line, dispensing 1ml per hour until that evening. The pack turns itself on (Battery operated) at 8pm and runs for 2 hrs. It then goes back to 1ml per hour and I have to check to ensure Ron's received at least 240ml, and if so, I turn the CADD pump off and disconnect Ron from the chemo. I wear chemo block gloves, flush his port line with saline, then, hepron. And, we're good to go until next time.

He's very tired during chemo days, but, the days in between he feels really good. He's only required anti-nausea meds just prior to chemo, but, not between treatments. Praise God!

Tomorrow is Friday and then Ron is finished. I'll disconnect his central line after treatment and he'll be "Free" through the weekend. We'll have to return on Tuesday to have his blood counts checked. Matter of fact, they said we'll have to come in twice per week for next 2-3 wks.

They're currently testing Ron's siblings (There are six of them) for matches. We meet with the doctor tomorrow some results may already be in, but, one last sister is being tested on Tuesday next week.

God Bless you All! This has been a rough ride, but, right now we're feeling pretty good! Anyone checking on Ron, just know, there is Hope! A few months ago I was so very scared, and now, I am at peace.... the fight isn't over, and I'm sure we have many more storms ahead of us, but, right now, we're just trying to enjoy the "Down Time" and the Good Times. Ron was so very sick just a few months ago, and right now, he can drive the truck down the road and pick up some milk, etc.... Life is Good! Just few months ago, he couldn't hardly get off the couch.... continue to have Faith, continue to "Seek the answers"... always ask for second opinions.... etc...

God Bless you All!!!!!!!!!!!!!!!!
Love, Cindy

_________________
Cindy, wife of Ron age 66 dx w/MDS (RARS) Feb'09, Vidaza response 13 cycles. BMB 2/10: -5q/increased blasts

[Neil Cuadra]

Originally Posted by launch

They're currently testing Ron's siblings (There are six of them) for matches.

We face so many unknowns with MDS, but the chances of a sibling match are one case where the mathematics are exact.

People with a single brother or sister have only a 25% chance of getting a match. With six brothers and sisters the chances are over 80%. Big families come in handy!

Here's how the numbers break down (excluding identical twins, who always match):

# siblings  Chance of at least one match
----------  ----------------------------
    1              25.0%
    2              43.8%
    3              57.8%
    4              68.4%
    5              76.3%
    6              82.2%

Good luck, Ron!

[launch]

Neil,

Thank you so Much! My stats skills were never very good, lol. Thanks for breaking it down to an easy to understand chart! Much appreciated! 82.2% sounds GREAT!!!!

We'll let you know what the results are when we receive them!

Hugs, Cindy & Ron

[Birgitta-A]

Hi Cindy,
Wonerful that Ron can tolerate the chemo without severe adverse effects! Now we hope for a good match!
Kind regards
Birgitta-A

[launch]

Today is Day 18 following start of Consolidation Chemo Treatment. WOW! Didn't realize this treatment would knock Ron's blood counts so low! While he tolerated the treatment (chemo) very well, Ron developed a case of the shakes ("Riggers") and spike fever (101.6F-102.5F) on 11/03/10 (Wed), which was 9 Days ago. I had to take him to the ER, as advised by the on-call Hematologist. We arrived to the ER, then, his fever started going down, 100F at check-in, 99F when assigned inpatient room, then, 98.6F right before I went home to sleep in a real bed...

That fever, although it went away, landed Ron an automatic 3-5 day stay to receive IV Antibiotics. They said, they had to ensure whatever it was that caused the riggers and spike fever needed to be treated immediately and for 3-5 days. They did blood cultures, etc. and never found anything, but, Ron's fever never returned. I believe we were able to "nip it in the bud".

But, Ron's WBCs were only .5 (equals 500) when we checked into ER and they went down to .3 (300) and have stayed between 300-400 only. They will not release Ron until they start recovering and they reach at least 500. The doctor believes the counts will start showing recovery after the weekend, and hope to be able to release Ron on Monday when he will be on Day 22 following Consolidation start date.

Neither one of us realized the effect of the Consolidation Treatment and that it would knock his counts so low. This treatment was very strong, and Birgitta, you're right, we are very fortunate that Ron tolerated it so well. He feels good, other than, a few days he's had pains in his stomach. They haven't found anything (CT SCAN), except some minor inflammation. They believe the inflammation was a result of the chemo.

So, here we are, in the hospital, missing out on the Veteran Day "Freebies"... lol. Ron was in the US Air Force 30 yrs and I was in 20 yrs. We could have had a free 6" sub from subway today! I could do a chow-run, but, they would only give me one ;-p Not worth the drive, lol.

Happy Veteran's Day to All of you Veterans, and thank you to all that have supported the troops (ie. Spouses, Family Members, Friends, etc).

Love, Cindy

[Susan L]

Originally Posted by launch

Today is Day 18 following start of Consolidation Chemo Treatment. WOW! Didn't realize this treatment would knock Ron's blood counts so low! While he tolerated the treatment (chemo) very well, Ron developed a case of the shakes ("Riggers") and spike fever (101.6F-102.5F) on 11/03/10 (Wed), which was 9 Days ago. I had to take him to the ER, as advised by the on-call Hematologist. We arrived to the ER, then, his fever started going down, 100F at check-in, 99F when assigned inpatient room, then, 98.6F right before I went home to sleep in a real bed...

That fever, although it went away, landed Ron an automatic 3-5 day stay to receive IV Antibiotics. They said, they had to ensure whatever it was that caused the riggers and spike fever needed to be treated immediately and for 3-5 days. They did blood cultures, etc. and never found anything, but, Ron's fever never returned. I believe we were able to "nip it in the bud".

But, Ron's WBCs were only .5 (equals 500) when we checked into ER and they went down to .3 (300) and have stayed between 300-400 only. They will not release Ron until they start recovering and they reach at least 500. The doctor believes the counts will start showing recovery after the weekend, and hope to be able to release Ron on Monday when he will be on Day 22 following Consolidation start date.

Neither one of us realized the effect of the Consolidation Treatment and that it would knock his counts so low. This treatment was very strong, and Birgitta, you're right, we are very fortunate that Ron tolerated it so well. He feels good, other than, a few days he's had pains in his stomach. They haven't found anything (CT SCAN), except some minor inflammation. They believe the inflammation was a result of the chemo.

So, here we are, in the hospital, missing out on the Veteran Day "Freebies"... lol. Ron was in the US Air Force 30 yrs and I was in 20 yrs. We could have had a free 6" sub from subway today! I could do a chow-run, but, they would only give me one ;-p Not worth the drive, lol.

Happy Veteran's Day to All of you Veterans, and thank you to all that have supported the troops (ie. Spouses, Family Members, Friends, etc).

Love, Cindy

Happy Veterans Day to you both. I received your email and thank you. I will be following Ron's progress. This is one heck of a ride for everyone - I pray for yu both. Keep us informed.

[launch]

We received disappointing news today. With so many "odds" in our favor, they tested 5 of 6 siblings and NONE of the matched! We were so expecting a match... and shocked that None matched. The 6th sibling donated her blood for testing, but, she had rececieved nuclear radiation years ago for thyroid cancer treatment. The doctor was reluctant to consider her at all. They may test it now that none of the others matched, but, we're not sure. Not sure if it would be smart to receive her SCTs if a match?

We'll see. We'll keep you updated on progress....
Hugs, Cindy

[mausmish]

Hi Cindy,

How disappointed and shocked you both must be! Don't give up hope though. I was able to find an unrelated fully matched donor in less than six months. Also, my transplant doctor said that with the advances in treating GvHD that it is no longer important to have a perfect match or even a very close match. If I hadn't been able to find an unrelated donor, he was pepared to proceed with my half-sister who is 70 years old as the donor for a haplo transplant, and she has not even been tested. I forget which facility you're working with but you should ask your doctor about this. If you're interested in additional opinions regarding the matching issue, this is a primary focus of research at Johns Hopkins in Baltimore; I can give you contact information for my doctor who is also the transplant department head. Send me a PM if you're interested.

Hugs, Karen

[Neil Cuadra]

Cindy and Ron,

No match among 5 siblings tested? That's so disappointing.

Let's hope Ron's sister matches in case they decide she's an eligible donor. If not, let's hope they can find a perfect match in the donor registry. They found two perfect matches for my wife the very first time they checked the registry, and both were closer matches than my wife's siblings.

[Susan L]

I am so sorry to hear that none of the siblings so far matched. You are both in my prayers - I have been reading so much lately of unrelated matches being found, that I feel you will get one. Hugs coming your way.

[Al's Wife]

Cindy,

Sorry to hear there are no matches yet; but keep the faith.

As always, you and Ron are in our hearts and prayers.

Linda

[Greg H]

Hey Cindy!

Let me second Karen's point about unmatched donors. The folks at Wake Forest found three for me lickety-splt. Everyone's different of course, but the chances are probably pretty good.

And the numbers for MUDs are starting to look pretty much like the numbers for sibs.

Here's hoping Ron's match comes through quickly.

Take care!

Greg

T

[Birgitta-A]

Hi Cindy,
Do remember that patients that have difficulties to find a good match should be able to get cord blood.

Now more results from a study - like Ron's - with low dose (50 mg/kvm) Vidaza during 10 days with or without Entinostat is published. Entinostat didn't increase the response rate but 10 days of Vidaza increased the response rate compared with higher dose (75 mg/kvm) Vidaza during 7 days http://ash.confex.com/ash/2010/webpr...aper29350.html

I think the response rates are rather low compared with other trials with Vidaza - the best results i have seen is 83 % responses when Vidaza was combined with the HDAC inhibitor Zolinza.
Kind regards
Birgitta-A

[Rosemary]

Good luck Ron and Cindy. I have been on Revlimid for a year, and have had no side effects, although I was reluctant to start taking it when I saw all the side effects that could happen. My oncologist said if you saw the side effects for aspirin, you wouldn't take that either! I do take the 8lmg aspirin daily, as Revlimid can cause deep vein thrombosis, but no doubt your oncologist is looking after that side of it.
Hope it works as well for you as it has done for me. All the best!

[launch]

Wonderful News!!!! We are happy to celebrate like Lori's celebrating today as well! The Doctor told Ron his BMB from 12/6/11 reflects complete remission! Praise God!

Next Step: Plan is to proceed with a Mini-Transplant (Unrelated Donor). The doctor seems to believe based on Ron's marrow condition he will have no problems finding a match in the Registry. First though, he wants Ron to gain a bit more strength before proceeding.

He doesn't want to give Ron any more Consolidation Type chemo, but, does want to wait another month at least, perhaps two months. During this wait, he will start Ron on a round of Dacogen for 3 Days protocol in hopes it keeps him where he's at for now. He just didn't want to knock Ron on his butt while he's suppose to be getting stronger. The other option is to do nothing and just wait another month. (His recommendation is to do something, while waiting and that is Dacogen).

So, Dec 27th, Ron begins this new treatment as he continues to move forward toward a mini-transplant. His counts look good, except PLTs could be higher. We praise God for the results and wonderful News today!

WBCs 6.7, HBG 10.1, HCT 30.9%,Neut 50%, PLT 60

We have claimed Ron's healing, and we accept God's will in how every he delivers the healing. I'm opting for divine intervention BEFORE the transplant, but, hey, if we go forward, then, it's the path we're suppose to be on. I have total Faith in God's leading the path.

Have a blessed weekend!
Love, Cindy

[Birgitta-A]

Hi Cindy,
These news are really wonderful ! Hope Ron will continue to get stronger and that they will find a good match for the Mini-Transplant.
Kind regards
Birgitta-A

[squirrellypoo]

Hi Cindy.

I couldn't reply to your PM because your Inbox is full (you need to delete some messages!).

But my conditioning regime was: I had fludarabine and busulfan together for a couple days (if you sift through my thread I probably said exactly how many!) and then campath for a few days as well. The first two did NOTHING to me - they may as well have been saline, and the campath wasn't bad, either. And no radiation.

Funny that his mini would include TBI - that's normally only in full transplants as far as I've seen...

[launch]

SORRY THIS IS SO LONG!!!

I haven't posted lately, but, have visiting the forum, checking on others. Ron has had a very difficult time lately. Back in Nov'10, after the consolidation chemo, his stomach started really bothering him. He told the doc and they told him to take miralax, blaming it on the bowel constipations, and not moving very well, etc.

I had to take him to the hosp back in Dec, due to severe stomach pains. About an hour after he would eat, his stomach would hurt, then get stabbing pains. I took him to the ER. They X-Rayed, blamed the bowel as being full of "waste" and told him to take Miralax (double dose). I then coordinated with local GI doc for an upper GI scope to rule out ulcers, as Ron believed he felt the same pain when he had ulcers over 20 yrs ago. We managed to arrange Upper scope within days, and there were no findings other than a little stomach irriation, but, no ulcers.

The following week, the pain was so severe, accompanied by a fever, so, I took him to the ER again and he was admitted inpatient. They did a colonoscopy and found the bowel severally inflamed where the large and small intestine meet. The "Cecum" actually connects the two, and the Cecum is almost completely closed. Ron was discharged, pending biopsy results.

After just 2 days out of hosp, I had to take Ron back to the ER at Emory due to fever 103.3F. (It was during that major winter/ice storm in Georgia!). I'm so thankful I was able to get him there, before the freezing rain iced over the roads! That happened later that morning.

So, biopsy reports were delivered inpatient. Part of the Sm intestine is badly ulcerated. They performed biopsies and cannot find the reason for the irritation. My personal opinion, after researching, is the Cytarabine from the Induction and the Consolidation treatments. He developed bowel problems after both procedures. The CT Scan shows narrowing of the bowel wall. They have ruled out Chron's Disease, Irritable Bowel Syndrom and TB as causes. They also tested for Lymphoma. The end results being, Ron's tissue is ulcertated. The fix action is to remove that section of the bowel. Before that, they want to explore the sm intestine further with another scope, but, following Dacogen Dec 27-29th, Ron's immunity is very low (WBCs .7).

Meanwhile, since admittance, Ron has had nightly fevers and sweats each night. Like clockwork, around 11pm, it starts. The GI docs were wanting to wait for fevers to recover, Hematologists said to do it now, the fevers were believed to be due to neutropenia. The GI docs were reluctant because, they could introduce bacteria into the blood system with more biopsies, and besides, the MRI isn't showing anything like cancer in the sm intestine and they can wait to explore. Meanwhile, Ron's laying in a hosp bed, muscles wasting away although he does walk laps... He's not able to eat a very nutrional diet. He can only eat soft food and nothing that causes gas. REASON: Gas builds up in the sm intestine, while waste is attempting to move thru cecum.

What Next? I told GI & Hema they needed to be talking. It seemed as one was waiting on the other, etc. a vicious circle. Friday, a decision was made, to put bowel issue on hold for now, counts too low to take action anyway. Ron was also given a BMB because of the return of fevers and night sweats. (If you read our history, Ron had fevers and sweats when first dx with MDS and they went away w/Vidaza, but, when the Vidaza stopped working and the AML Monster reared it's ugly head, the fevers and sweats returned).

We will get the results of BMB tomorrow and find out if Ron's marrow is behaving, or he has regressed back to MDS or worse, AML! A few months ago, I was filled with peace about Ron's disease as described in Phillipians 4:7, but, the devil stole that from about 2 wks ago. Since that time through lots of scripture reading and prayer, I have thankfully regained that peace.

I told Ron, whatever the outcome tomorrow, we will fight it and there are treatments. We do know, if it's Induction Chemo, his body will not be able to tolerate the same protocol he had in Tampa, at least not right now. There are some other options they told me, if it is established that he has MDS or AML. (I'm not sure what they are, but they have mentioned some clinical trials out there right now). They mentioned a drug called L-Cytarabine too, which is supposedly not as strong as Cytarabine itself. They mentioned there are some meds that can be given by IV or pill form.

SO, I guess we really won't know a lot until at least tomorrow, then, the chormosomal aberations will come several days later.

Please keep Ron in your prayers. We're so ready for him to come home! He's been here too long and it's depressing to have gone thru Induction and then, looking forward to a SCT, then, realize, there's a possibility that the race is stopped, before you hit the finish line!

But, I also have to remember, that it's all in God's Plan and in God's time. God may be protecting Ron from a SCT right now.... we have to continue to trust in God and know that he will lead us... and carry us when we can no longer walk.

God Bless you All!
I will update within the next few days.
Cindy

[Neil Cuadra]

Cindy,

Thanks for bringing us up to date. You've sure had a rough couple of months, haven't you? Ron's had to endure a lot of tests and procedures but at least they've been able to eliminate those possible causes of Ron's GI problems. It's not hard to see why the doctors have been debating when and how to treat him while minimizing the risk of an infection.

It's too bad you ended up back in emergency twice after going home, but Ron is safer at home than in a hospital (and its infection risks) unless he needs immediate critical care, so I'm not surprised they sent him home as soon as they thought he was ready. When you're at home it's a lot easier to get rest and it helps your spirits too. The last time my wife was hospitalized we started with two visits to the emergency room. After she was admitted, treated for a couple of days, and had gotten past the highest risk, her doctor came and told us that she'd reached the point where the risks of being at home were less than the risks of being in a busy hospital. I think it was a smart call.

About Ron's diet: have you talked to a nutritionist yet? He or she ought to be able to find soft non-gas-producing food choices for Ron that still constitute a nutritious diet. And that can improve his strength, how he feels, and his rate of recovery. Don't leave it to the GI doctors and hematologists to give you sufficient diet advice; that's not their speciality.

[launch]

Neil,
Thanks for the reminder. While the GI doctors said they were going to get Ron on a good diet, remembering the care at Moffitt Cancer Center, they actually sent us a Nutritionist to discuss Ron's situation, as at the time in Moffitt Cancer Center, Ron's Albumin (Protein) counts were extremely low and he had fluid overload. They wanted him to intake more protein in order to help remove fluids from his body tissue. Tomorrow, I will "officially" request a Nutritionalist. You would think this would have already been thought of and set up... but, really, you have to look after yourself!

Oh, I meant to also post, last night when the nurse brought Ron his night meds, Ron said, "One of those meds is causing me to hallucinate". The nurse was stunned, and so was I, this was the first he had mentioned. When questioned further, Ron said he was seeing images when he closed his eyes. Things like, people giving speeches, race cars, bright red lights, etc. He didnt hear them, but saw them when he closed his eyelids. I told the nurse it was probably "V-Fend" (Antifungal). She said she remembered Ron had been on that before during his last visit, so, it wouldn't have just started. (I begged to differ). I told her, perhaps it's cumulative?

She called the doctor and did not mention my thoughts. Then, she came back and said, the doc wants to stop the V-Fend, as it could be causing the problem. It may take a few days to get out of the system.

I had thoroughly read the side-effects of V-Fend and it said it could affect vision, etc... so, I already knew this more than likely was the reason...

Take Care,
Cindy

[launch]

The BMB results from 1/21/11 completed. Ron has come out of remission and now reverted back to MDS. I'm not sure of the choromosomal aberations yet, but, he's not able to receive intense chemo right now. They have offered him and he has accepted the clinical trial known as ABT-348. Does anyone know anything about this?

I never thought I'd be Praising God for a dx of MDS, but, compared to AML, I am thankful that Ron has reverted to MDS vs straight into AML. His body would not have been able to tolerate what it would have needed to get the beast under control.

Please keep Ron in your prayers. God has been with us all along, and I was thinking today, like biblical Paul, who had a thorn in his side that God would not remove... perhaps MDS is Ron's thorn. We pray for a manageable MDS condition.

Hugs, Cindy

[Greg H]

Cindy,

I'm sorry to hear about the tough time that Ron is having. I went looking for info on ABT-348, but couldn't find very much. It looks like the trial is a Phase 1 trial evaluating the safety of the drug and its effects on folks with MDS, AML, etc., assuming it's this trial, which is the only one I can find for the drug that's linked to bone marrow diseases.

Unfortunately, I can't find any good info on how the drug is supposed to work. So I'd recommend asking the docs a few questions about how and why they think it's going to help.

Good luck.

Greg

[launch]

Thanks Greg,

Only info I've found is that it's Phase I and that makes me squirm a little bit, but, I asked my husband how he felt and he is very much for entering the trial. The doctor offered him chemo as well, but, due to Ron's bowel condition and low blood counts, recommended against the chemo route right now. He said, that, there are several people on this trial right now and they have had very favorable results so far. Who knows, perhaps it will be the next drug of choice?

I keep encouraged, and just keep praying. We will meet with the Oncologist tomorrow (Ron & I this time), and I have several questions.

It's so strange, I still can't stop thinking about how Ron was dx with MDS Feb'09 and we were devistated, yet, now, Ron has gone MDS to AML, AML to remission, out of remission to MDS, and this time, we are thankful to have received the MDS dx. Strange huh? Once you meet that "Beast".... (AML), you definately don't want to go back there... that's for sure.

Hugs to all...
Cindy

[launch]

I know it's been a while and I'm sorry I haven't posted here more frequently. I've been keeping up Ron's caringbridge website if anyone wants to check in, I've put Ron's site at the end of this post.

By the time Ron was to sign up for the clinical trial ABT-348, it did not have openings that week, so, he was again offered and accepted the study drug TG02-10 (Citrate). This study is still at Phase 1, meaning, of course, while proven in laboratories to be effective, they now have to determine what is the maximum dose a human can safely take and if they can achieve response to the drug. Ron was started with 70mg 5 days, then, 2 days off, then, another 5 days on and then 2 wks off.

Ron's fevers and sweats were getting better, but, the blood counts are not improving. Ron is transfusion dependent on RBCs weekly and PLTs twice per week. He's also on Amicar 3 x per day, and the Doctor allowed the PLTS to get down to 4 and 5 (4,000 and 5,000), but, over the past month, Ron has had nose bleeding. He has purple spots all over his arms too. And, he remains very very tired. He has had 2 falls in the past 2 months, the last one being, just in the carpeted bedroom, he was standing beside the bed and just went down while using the urinal bedside. He skinned his arm really bad, lifting off the top layers of skin. It left a mess, but the Amicar did work at keeping the bleeding minimal. It clotted up very quickly.

What Now? We were stunned when we went in yesterday, expecting to begin cycle 3 of the study drug, but, the doctor told us the drug is not showing any response for people with Ron's conditon (MDS) and I suppose at his chromosomal classification. He was told, continuing it would be non-productive and that he did not show others getting responses with the other clinical drugs (Phase I). So, an option for Ron is not available. He wanted to know what Ron wanted to do? He said they could continue transfusions as he needed them, or we could get them locally to make it more convienent for us. (We were Floored). This is not the news we expected to here.

So, basically, we were being told, they can do nothing else for Ron's condition. We still have Faith in the Lord and I know, it's not over until God withholds the last breath. Ron's been fighting MDS, transitioned into AML, then, came out of remission, and back to MDS. I rebuke my prior post of MDS being Ron's thorn in his side. I believe Ron's been healed and I cling to that belief. My Faith has grown so much of the past year, especially, I don't say that I believe his healed just to make myself feel better, but, I say it because I truly believe it in my heart. I pray that God Manifests it real soon.

We asked the doctor to allow Ron to stay on the trial another cycle. I personally have seen symptomatic responses, like the fevers and the sweats decrease immensely! I pray that we're able to "Stun the Doctors!"

Meanwhile, I'm searching for a Phase II or III trial that Ron may qualify for at another facility. I am not against taking him for another opinion, even out of state.

Any recommendations?

Thanks,
Cindy


www.caringbridge.org/visit/rallison

[Neil Cuadra]

Cindy,

I really admire your determination. I'm really sorry to hear about Ron getting bumped from the trial. I can understand why doctors don't want to keep patients in a trial if they think the risks might outweigh the benefits, but of course they are making educated guesses about Ron's prognosis without knowing for certain.

Phase I trials are more of a long-shot than later phases, because they are designed to test what a drug does but not how it compares with non-treatment or what the most effective dose is. It would be much better if he got into a Phase II or III trial for a treatment that's more likely to do some good.

You may have to settle for transfusion support without other treatments, and just deal with symptoms as they come up, while you watch for another trial opportunity. I wish you had better choices.

About falling: urinating can cause an instant drop in blood pressure, leading to lightheadedness and danger of a fall. It's better to sit than stand.