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

[launch]

Hello All...

Unfortuately, we're back in treatment, but, are thankful there are treatment options. We have enjoyed the "Time-Off" of treatment during Ron's short lived "Watch-n-Wait". Many of you may have read my previous posts under clinical trial e1905. I posted under the initial thread the Flowerlady started.

Just an update, Ron was removed from clinical trial (e1904) this year (Apr'10) due to his blood counts being adversly affected after 13 cycles of Vidaza treatment. We began "Watch-n-Wait" and during that time, Ron was monitored for blood count only.

Vidaza was awesome for Ron for about the first 11 cycles. Initially when dx, Ron had 6 chromosomal aberations, and the Vidaza reduced the aberations to only one type, -5q. During cycle 12 Ron really began to get run down and after cycle 13 of Vidaza, Ron's blood counts (WBCs) were suffering and too low to receive treatment when he arrived to begin cycle 14. At this point, Ron's doctor decided it best to remove Ron from the clinical trial and give his bone marrow a rest. After being removed from treatment, the counts started increasing and Ron started feeling wonderful and full of energy.

After just 2 mons, Ron's blood counts started dropping and have steadily dropped over the past month. Initially they were going to do another BMB, but, after reviewing his case and collaborating with Moffitt Cancer Center, it was decided, a BMB would not be necessary at this point due to a recent one he had on the clinical trial schedule. Ron will begin taking Revlimid sometime within the next 2 wks.

Revlimid is pill form and will be delivered directly to our home. It is strictly controlled and you have to go through an interview process to receive the medication. The first interview was paperwork, forms, etc. The following interviews will be conducted monthly over the telephone.

We're not quite sure what to expect, but, have been researching Revlimid and side effects, etc. Right now, Ron's WBCs 1.9, Neut 46%, HGB 10.6, PLT 85. We're really concerned about the dropping PLT especially, but, they are monitoring Ron closely.

His energy level is still good and he's walking 2 miles each day. We're back in ballroom dance classes, so, he's getting exercise there too. He's not on antibiotics, but, is being treated for "Shingles prevention".

Wish us Luck & Keep us in your Prayers. We're keeping a really upbeat attitude! We still serve a Mighty God and he is the Master Physician... it's all in God's Time... So, we continue to walk in Faith!

Hugs, Cindy

[ann]

Good luck and God bless.

[Al's Wife]

Cindy,

Hope things go well with Ron and his new treatment. You will be in our thoughts and prayers also.

God bless,

Linda

Husband dx 5/26/2010 MDS, currently taking Vidaza intravenously

[launch]

Ann & Linda...

Thank you both for your posts.... encouraging words and prayers always "Lift the Spirits".. Much appreciated!

Cindy

[launch]

We're still waiting on the Revlimid process for Ron to begin his much needed treatment to help his MDS condition. Evidently it can take up to 2 wks or more, and it will have been 2 wks on July 27, 2010. Since establishing the fact Ron requires new treatment, he developed a high fever last weekend, and Sunday evening, and became very weak. I took him to the Emergency Room (ER) at the recommendation of the standby Oncologist. The doctor believed Ron may require a transfusion and it was important to see his counts asap as well as treat for infection due to the fever being present.

It was 7:45pm when we arrived, 10pm when we were taken to the back, and midnight before I blew my stack. I lost it right there in the ER. Well, lets just say, they quickly drew Ron's blood and then we waited until 1:30am and there I went again, to the front, asking who was assigned to my husband, what were the counts, when would we see a doctor. Etc. etc.... well, 10 min later, we met our doctor and she was very apologetic. As many of you out there already know, "communication is the key". If they would tell us what's going on and what to expect, etc., then it would be so bad.

Well, Ron was FINALLY admitted in patient, and continued to be treated with antibiotics and did require a blood transfusion. (2 units). The fever never broke, but, after 4 days and all clean cultures of bacteria and a few viruses that were checked, they decided the fever must be due to the MDS itself. Of course, we would never know that, and it's important to treat for infection before something gets out of control. Ron was given predisone to settle things down and keep the fever controlled until the revlimid protocol is started. (Fingers crossed it will be soon). He already is back down to 8.7 HGB and Hematcrit down to 25%, so, they're bringing Ron back in tomorrow (Mon) for blood counts, and again Wed this next week.

But, the scarest thing was Monday in the hosp when they announced that Ron had blasts in his blood now, and they expected that to mean Luekemia. Thanks be to God that it was a false alarm, and while we awaited the news after he got the BMB in the hospital, our devotional verse was from Isaiah 40:31 (KJV): "But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint."

Ron was released Friday afternoon, and we're so thankful to be home, but are anxiously awaiting to get back on a treatment that brings his energy back.... He was sent home with a prescription to continue oral antibiotics (Augmentin), 875mg every 12 hrs, and prednisoLone 10mg once per day. Ron continues to take Acyclovir for shingles prevention.

We keep praying....

Hugs, Cindy




I try to be very patient, but, at some point, you have just got to step up and ask questions, etc. I told them they needed to draw his blood and do it really quick,

[Birgitta-A]

Hi Cindy,
Too bad that Ron has had to wait so long before he can start with Revlimid - hope he will recover from the fever and can start treatment with Revlimid very soon!
Kind regards
Birgitta-A

[launch]

Birgitta,
I agree. I asked the clinic today to contact the Revlimid company to determine if everything is on track. I would hate to find out later that someone hadn't sent in a required form, etc. So, follow-up is important!

Will keep you advised. I took Ron back in today for blood counts and his HGB 9.9, up from 8.7 last Fri and Hematicrits up from 25 to 28.5, which was great! Platelets came up from 63 to 71. So, that's a good thing. He doesn't have much energy and his legs (Bones/joints) ache right now. But, did nto require a transfusion today.

Cindy

[launch]

Okay, So, it's good to be agressive in finding out what the status is, etc. etc. Come to find out, today, I contacted the clinical nurse to see what the status was on Ron's Revlimid and was told the nurse handling it was off today, so, my comment... "Is she the only one that can inquire? So, we just wait on her to return?". Well, at that point, the Nurse talking to me said she would personally call the company if that's what I wanted... and my reply was, "Yes, Please".

Long story short... The Revlimid had been approved for Ron's treatment, but, evidently, there was a glitch in the processing/distribution of the drug. (What I Feared).

The pharmacy that was contacted by the company did not have it, so, they contacted a "Sister Pharmacy", and they were suppose to fill the prescription & contact Ron for delivery. That did not happen, because, the Sister Pharmacy said they did not receive the Faxed prescription... or so they said. The nurse in the clinic today re-faxed the prescription and then, the sister pharmacy said they were backlogged.

My Answer: "Not Acceptable".

The Nurse called the sister pharmacy again after 5pm and will get with someone in the morning to rush the distribution hopefully. She promised to call me tomorrow morning with the latest status/update.

I'm sharing this information as a reminder to all to follow-up, follow-up... never wait too long before asking questions!!!

Hopefully this will be resolved this week and Ron will recieve the Revlimid.

Cindy

[Birgitta-A]

Hi Cindy,
Too bad that we have to be very alert and strong to get treatment ! Good for Ron that he has you because otherwise we don't know how long he should have been waiting for the drug.
Kind regards
Birgitta-A

[launch]

Hello All...

After a grueling day... we weren't getting anywhere with Ron's Revlimid prescription because of the "processing time" with our speciality pharmacy through our insurance... we were just doing a lot of waiting.

The nurse made a recommendation that we contact our insurance and ask for a special, one time authorization for local distribution of Revlimid so Ron could start it today.

3 Hrs of phone calls later, we walked out of the local pharmacy with a one month supply (total: 28 pills) at the tune of $13,592.46 (US Dollars)... CAN YOU BELIEVE THAT??? I could not believe it!!!! Amazing what is charged for these medicines! I'm just so thankful that we have good insurance, or, I don't know what we would do! (It made me sad to think about those not as fortunate).

Ron's Oncologist said, we have a 1 in 4 chance of Revlimid working for Ron. (We pray he responds). I thought Revlimid has a better track record, but, what he explained was, Had Ron only had -5q deletion in the very beginning, then, yes, better odds of a favorable response. But, because Ron started his MDS with 6 aberations, and has already been treated with Vidaza, that, the response odds are not as good, but, he's hoping for a good response, and of course, if no response, then, we have other options.

Please keep Ron in your prayers, that Revlimid works for him and it helps bring his energy level back up. He's very tired right now. Blood counts today were HBG 9.7, WBCs 3.8, Platelets in 70s, and I'm not sure about the rest. He did not require any transfusions, which is good. We have follow-up appt (Labs) Friday and next Monday. (They're keeping a close eye on him right now).

God Bless you All!!!
Cindy

[Birgitta-A]

Hi Cindy,
Never give in when you know you are right ! Now we can only hope for the best possible response.
Kind regards
Birgitta-A

[launch]

Ron's being closely monitored for blood counts as he began Revlimid treatment wed (7/28/10).

Today's Labs: HGB 9.0, HCT 26%, WBCs 4.5, NEU 76%, PLT 71.
Ron did not need a transfusion, and we're very happy with his WBCs and that his Neutrophils are 76%.

He does not feel good at all though. No energy at all and very tired. (His condition has been like this for the past 4-5 wks). He seems very depressed to me too... <poor guy>. I really just want him to start feeling good again and have quality of life... I think this is what we all strive for...

Ron's complaining of a lot of pain. He had joint aches as he started losing energy, just before he had to go into the hosp a few weeks ago.

And now, Ron's complaining that his legs ache. (As though it's "inside" his bone). And, he has developed those dreaded night fevers again. Matter of fact, over the past several days, he has had a steady low grade fever that does increase at night. Right now, he's at 102F. We have him iced down...(neck, head, cartroid artery area)... that's what we use to have to do before he responded to Vidaza. If it continues to climb, we'll have to take him back into the hospital. Right now, I'm pretty comfortable because his WBCs are normal range and he's also on preventative antibiotic. So, we can standfast.... just for a while, but, then, will have to take him in if it doesn't start going back down...

I'm praying for some relief for Ron.... He's had a tough battle this past 5-6 wks. (Just feeling so very bad). Please keep Ron in your prayers....

Hugs,
Cindy

[launch]

Ron was hospitalized just 6 hrs after my last post. At 10pm Ron developed severe back pain, which we thought was muscular skeletal, as he's had problems in past, but, at 4:00am (Sat /July 31) he begain experiencing chest pain. I took him to the ER immediately. He's at same hosp that originally dx him with MDS, and the same hosp where his cardiologist services.

They're waivering in the diagnosis, as Ron has multiple things going on... first believed to be heart attack due to heart enzymes present in blood test. Then, developed arrythmia, atrium refib, belived to be percarditis. Also, Ron has those same fevers he had just 2 wks previously. They've now called in Infectious disease Doctor to check for possible virus infections, etc.

They have continued him on the Revlimid that he started taking last Wed night. He had severe back pains the past 2 mons, so, the Revlimid would not bring about the back pain issue.... not sure if it's related to the others... I've looked at the side effects, and there are so many on any drug. So, we're just confused and very concerned about everything right now.

They have Ron on IV antibiotics (For Fever), and started him on prednisone again to reduce inflammation, if percartitis, etc. They have him on blood thinners, but, have already had to give him 2 units of blood Saturday (July 31), and the HBG is already back down to 8.0 so they're giving him another unit of blood now. Maybe another unit will be given later.

Too much going on in our lives right now, as I know you all well understand..... Keep praying.
Hugs, Cindy

[Debbie W]

Wishing that all goes well for you and Ron.

Kind regards,

Debbie

Originally Posted by launch

Ron was hospitalized just 6 hrs after my last post. At 10pm Ron developed severe back pain, which we thought was muscular skeletal, as he's had problems in past, but, at 4:00am (Sat /July 31) he begain experiencing chest pain. I took him to the ER immediately. He's at same hosp that originally dx him with MDS, and the same hosp where his cardiologist services.

They're waivering in the diagnosis, as Ron has multiple things going on... first believed to be heart attack due to heart enzymes present in blood test. Then, developed arrythmia, atrium refib, belived to be percarditis. Also, Ron has those same fevers he had just 2 wks previously. They've now called in Infectious disease Doctor to check for possible virus infections, etc.

They have continued him on the Revlimid that he started taking last Wed night. He had severe back pains the past 2 mons, so, the Revlimid would not bring about the back pain issue.... not sure if it's related to the others... I've looked at the side effects, and there are so many on any drug. So, we're just confused and very concerned about everything right now.

They have Ron on IV antibiotics (For Fever), and started him on prednisone again to reduce inflammation, if percartitis, etc. They have him on blood thinners, but, have already had to give him 2 units of blood Saturday (July 31), and the HBG is already back down to 8.0 so they're giving him another unit of blood now. Maybe another unit will be given later.

Too much going on in our lives right now, as I know you all well understand..... Keep praying.
Hugs, Cindy

[Birgitta-A]

Hi Cindy,
Too bad that Ron got heart symptoms and perhaps an unknown infection. Hope they manage to get correct diagnoses and find effective treatments!
Kind regards
Birgitta-A

[launch]

Ron was released from hosp after another week inpatient. He was admitted again due to fevers and they've run every test possible on him, including PET Scan, chest CT Scan, Sinus Scan, respiratory cultures, blood cultures, etc... They wanted to find the source of the fevers, by finding an infection, and/or finding Leukemia outside of the bone marrow. The BMB 3 wks ago, and the recent testing (Scans, blood, etc) did not reveal anything that would suggest Ron had transformed into Leukemia.

After 1 wk of trying to dx Ron's fevers, we were told, it is believed that Ron's MDS is transitioning into Leukemia and the recommended treatment is "Induction Chemo Treatment", just like he already had Leukemia. They said, they would start it right away, instead of waiting until he got really sick.


We are completely stunned. There is no visible markers that it has transitioned into Leukemia, but, believed to be doing so now. So, we had to make our decision what to do, as it was recommended to just start treatment now vs going home and coming back. (Ron was already inpatient and would have to be so for at least 30 days for treatment).

Ron opted for a different route. He said he wanted to be discharged from the hospital, and he wanted to travel back to Moffitt Cancer Center, to visit with Dr. List before making a decision as to what treatment he would undergo. We were only provided one option here, and that is, "Induction Chemo", so, we're just looking for some other options, even if it means we have to travel to Tampa, FL regularily for some treatment.

We leave out on Tues this week, and we have an appt on Wed. Wish Us luck. Ron is in a lot of pain (Bone pain), and has ongoing fevers, but, we're looking forward to learning more at Moffitt.

NOTE: I've been bugging the medical professionals to test/treat my husband for Lyme Disease. He was tested and it was negative, but, so was my neighbor, who was tested 3 times as negative, but, had ongoing fevers for 9 mons & bone/joint/leg paints, etc. Finally, a doctor treated him with the required antibiotic to kill the bacteria associated with Lyme, and he was cured. I'm not saying Ron doesn't have MDS, I just think, because he has MDS, sometimes other possibilities are not readily recognized or persued. I'm at a loss as to what to do to convience someone to treat Ron for Lyme Disease, just in case.

[Birgitta-A]

Hi Cindy,
Very sensible of Ron to try to get a second opinion from a world famous specialist like Dr List before starting strong chemo. Good luck!
Kind regards
Birgitta-A

[launch]

It's been a very difficult past 6 wks with Ron in and out of the hospitals for various problems (i.e. fevers, heart problems, etc.). We traveled to Moffitt Cancer Center and Ron was very very ill when we arrived to see Dr. List. He confirmed what was suspected in Altanta, GA. We decided to begin treatment right away here in Tampa instead of traveling back home. So, Ron's MDS has transformed into AML. He requires Induction Chemo and will be in the hosp for 4-6 wks.

He is now on Day 5 of his treatment and he is in ICU, having a very difficult time. He has a tremendous amount of water retention and all they could do is put in a urine cath to keep him from having to get up every 15 min to use the bathroom. He's very very weak and his lungs are filling up with fluid too. today they did an X-Ray and suspect possible lung bacteria/infection. When Ron's stable enough, they will perform a lung scope to check for type of bacteria/infection.

His heart has gone into A-Fib Arrythmia several times, which the cardiologists believe is only due to the fluids. They cannot stop the fluids, because he was getting 3 bags of chemo, antibiotics, saline to flush kidneys, and he has also required RBCs. He is not a very happy camper. They will keep Ron in ICU until the chemo is done (tomorrow is last day), and, then, until the fluids balance back out. He's so blown up right now... his calves seem like they could just "pop"... poor guy. Also, starting to blister some due to over hydration the dermatolgist said. He's also receiving diuretics, that the dermatologist say can also cause blistering.... Oh well.... it's a balancing act right now.

After this treatment Dr. List said we will explore the possibility of a BMT. He reminded us that this induction type remission won't last forever, that, something else will be required... and that Ron was still young and healthy enough for a BMT.

His siblings will be tested for a match soon. They are working the paperwork now. So scarey how things are going.... but, one day at a time....

And, I know I don't normally share things that "really aggrevate me"... but, I am so tired of hearing one common phrase because he seems so very shallow when you hear it so often..... and I'm sure many of you have heard the same thing.... "If I can do anything for you, please let me know..."

I'll leave it at that.... I will update how Ron's doing soon....
God Bless All of You....

Cindy

[Birgitta-A]

Hi Cindy,
Hope they will find a donor among his siblings - if not Ron can get stem cells from a donor from the register or from cord blood. Very good that you are in a well known clinic like Tampa!
Kind regards
Birgitta-A

[S001]

Originally Posted by launch

It's been a very difficult past 6 wks with Ron in and out of the hospitals for various problems (i.e. fevers, heart problems, etc.). We traveled to Moffitt Cancer Center and Ron was very very ill when we arrived to see Dr. List. He confirmed what was suspected in Altanta, GA. We decided to begin treatment right away here in Tampa instead of traveling back home. So, Ron's MDS has transformed into AML. He requires Induction Chemo and will be in the hosp for 4-6 wks.

He is now on Day 5 of his treatment and he is in ICU, having a very difficult time. He has a tremendous amount of water retention and all they could do is put in a urine cath to keep him from having to get up every 15 min to use the bathroom. He's very very weak and his lungs are filling up with fluid too. today they did an X-Ray and suspect possible lung bacteria/infection. When Ron's stable enough, they will perform a lung scope to check for type of bacteria/infection.

His heart has gone into A-Fib Arrythmia several times, which the cardiologists believe is only due to the fluids. They cannot stop the fluids, because he was getting 3 bags of chemo, antibiotics, saline to flush kidneys, and he has also required RBCs. He is not a very happy camper. They will keep Ron in ICU until the chemo is done (tomorrow is last day), and, then, until the fluids balance back out. He's so blown up right now... his calves seem like they could just "pop"... poor guy. Also, starting to blister some due to over hydration the dermatolgist said. He's also receiving diuretics, that the dermatologist say can also cause blistering.... Oh well.... it's a balancing act right now.

After this treatment Dr. List said we will explore the possibility of a BMT. He reminded us that this induction type remission won't last forever, that, something else will be required... and that Ron was still young and healthy enough for a BMT.

His siblings will be tested for a match soon. They are working the paperwork now. So scarey how things are going.... but, one day at a time....

And, I know I don't normally share things that "really aggrevate me"... but, I am so tired of hearing one common phrase because he seems so very shallow when you hear it so often..... and I'm sure many of you have heard the same thing.... "If I can do anything for you, please let me know..."

I'll leave it at that.... I will update how Ron's doing soon....
God Bless All of You....

Cindy

I sincerely hope and pray that you can tide over these tough times. All of us here can understand the helplessness. You shall be in my prayers as well.

[launch]

Thanks for continued prayers & encouraging words....

[ann]

Originally Posted by launch

Thanks for continued prayers & encouraging words....

I know what you mean when people say, If there is anything I can do and leave or hang up. I have started telling some of them what it is I need for them to do (wishing I could really tell them what to do!!! that was ugly)and they seem happy to do it. I also hate it when someone tells me that they are coming by to see Henry and never show up. Just don't say it if you don't mean it..............now I feel better.
Cindy, I am keeping you in my prayers and I pray that a BMT will be found for Ron. God bless you both.
Do you have friends or relatives there where Ron is hospitalized? Take care of your self and don't let down.
ann

[Debbie W]

My thoughts for success are with you

I know exactly what you mean by people saying let me know what I can do, sometimes you need to ask. Better yet, You need someone to advocate on your behalf. It takes one person, for me it was my sister, who contacted family and friends to say "they could use this...or this" etc. Some people do not know what to do, but if they are given something specific then they will do so. My sister did this on her own and she lives outside the US, but if there is anyone you know who will take on that role then kindly suggest to them what is needed - they can be the manager of what you need, while you focus on your husband and yourself. You need to support your husband, but you also need support!

Best wishes,

Debbie

[launch]

Debbie,
What a wonderful idea! Did you tell her what you needed, or was she smart enough to aleady know it?

[Debbie W]

She was smart enough to know, of course being my only sibling we keep in close contact and talk quite a bit, so I guess in a way I did tell her. But I never asked for her help, she just did whatever she could, including contacting family and friends. I've decided that every caretaker needs a manager, as the caretaker needs to focus on the patient ... that is what my sister said.

So try and take care of yourself and find that one person who can mobilize others

My best wishes for your husband's recovery, we just came home yesterday from induction therapy - all OK so far.

Kind wishes,
Debbie