REVLIMID

2009-March-3

Well we left at 4:30 this morning to go to Houston.
9:00am lab
10:30am Dr.Weber

SHE IS PISSED!!! why hasn't the Revlimid been started.I said we were not approved yet and she walked out of the office and came back and said we would be approved within one hour...AND WE WERE!!!Just go home and wait for the phone call within 24 hours for a few questions and get a delivery date.It's 168 miles from our house to MD Anderson (a 2 1/2 hour drive) and when we got home the call was on our answering machine.I called back answered a few questions and it will be delivered with 3 days.

second day

2009-February-24

8:00am Business Center Follow-up
8:30am Dr. Donna Weber (the Multiple Myeloma Cancer specialist)
she explains and draws us a picture of all the problems Ed has and the challenges he faces.He is facing a long and hard road.The best way right now is to take the drug REVLIMID (a pill form of chemotherapy) and Dexamethasone (a steroid).
With only the Myeloma and the drugs @ 25mg he would have a 95% rate of remission....With just the Multiprolifeative Disease: Myelofibrisos and Revlimid 10mg and the Steriods he could get up to 75% remission,, but with the Myelodysplastic it lowers the rate and now with all three problems and both drugs,,, he has a 30% chance of remission.But because he has such a large spleen and low platelet count she is going to start him on 5mg...So we fill out the papers and she writes a prescription.WHICH CANNOT BE FILLED AT ANY PHARMACY! so we have to apply for the drug through the pharmacy at MD Anderson..
Now we go home and wait for the drugs to be mailed to us and hope we got in the program that costs us less than $4000 a month.
Now I cry at the drop of a hat.Everything is going wrong.If it weren't for bad luck I'd have no luck at all .

MD Anderson

2009-February-23rd

Monday 02/23

10:00am blood/specimen collection
10:30am EKG-resting
2:00pm Bone survey
2:50pm Dr.Susan O'Brien (the Myeloprolifeative Disorder cancer specialist)

Myeloproliferative Disorders:

(myelo = bone marrow, proliferative = rapid multiplication), the blood-producing cells in the bone marrow (precursor cells) develop and reproduce excessively or are crowded out by an overgrowth of fibrous tissue. Typically, these disorders are acquired and not inherited, although rarely there are families in which several members have these disorders. It is likely that family members inherit a predisposition to the disorder rather than the disorder itself.


Three major myeloproliferative disorders are polycythemia vera,[myelofibrosis,] and thrombocythemia. The proliferation of blood-producing cells is always noncancerous (benign) when it begins. However, in a small number of people, a myeloproliferative disorder progresses or transforms to a cancerous (malignant) condition, such as leukemia.



Myelofibrosis:

is a disorder in which fibrous tissue replaces the blood-producing cells in the bone marrow, resulting in abnormally shaped red blood cells, anemia, and an enlarged spleen.


Myelodysplastic Syndromes:

In myelodysplastic syndromes, a line of identical cells (clone) develops and occupies the bone marrow. These abnormal cells do not grow and mature normally. The cells also interfere with normal bone marrow function, resulting in deficits of red blood cells, white blood cells, and platelets. In some people, red blood cell production is predominantly affected. Myelodysplastic syndromes occur most often in people older than 50 years. Men are more than twice as likely as women to be affected.


The cause is usually not known. However, in some people, exposure of bone marrow to radiation therapy or certain types of chemotherapy drugs may play a role.


Symptoms develop very slowly. Fatigue, weakness, and other symptoms of anemia are common. Fever due to infections may develop if the number of white blood cells decreases. Easy bruising and abnormal bleeding can result if the number of platelets drops.


A myelodysplastic syndrome may be suspected when people have unexplained persistent anemia, but diagnosis requires a bone marrow biopsy.


People with myelodysplastic syndromes often need transfusions of red blood cells. Platelets are transfused only if people have uncontrolled bleeding, or if surgery is needed and the number of platelets is low. People who have very low numbers of neutrophils—the white blood cells that fight infection—may benefit from intermittent injections of a special type of protein called a colony-stimulating factor.


Although myelodysplastic syndromes are thought to be a type of leukemia, they progress gradually, over a period of several months to years. In 10 to 30% of people, a myelodysplastic syndrome transforms into acute myelocytic leukemia (AML). Treatment with chemotherapy during the early stages of a myelodysplastic syndrome does not help prevent transformation to AML. If transformation to AML occurs, chemotherapy may be helpful, but the AML is unlikely to be curable.



Multiple myeloma:

is a cancer of plasma cells in which abnormal plasma cells multiply uncontrollably in the bone marrow and occasionally in other parts of the body.

Well that's a mouth full to swallow!!!We knew it could be a rough but DAMN! this is a tough...

well we knew it would be rough but now it's going to be tough too!!!

Marie has to go home

2009-February-20

Well I knew it would have to happen.Marie needs to go home and Ed is going to miss her so very much.It was good having her here to be with her brother and help me on the days I need to work.I am now going to cut my hours to only 3 days a week,Saturday, Sunday and Monday..I know this will still be hard but with going to Houston at least twice a week and possibly staying overnight I do need the money...

our first day @ MD Anderson

2009-February-16

OK,,we have to be there at 7am and the motel shuttle doesn't start running until 7am...bad start...but we can call the hospital campus shuttle and they run from 7pm until 6am...Ed, Marie and I are up and running starting at 4:30 with baths,COFFEE,hair,get dressed,walk Max,oxygen tank and get to the shuttle.
7:00 new patient registration
7:30 nursing visit
8:15 blood/specimen collection
11:00 bone marrow ASP/BX (bad mood starts) Marie goes back to the motel to walk Max
1:30 chest,PA & LAT
4:20 Dr.Susan O'Brien (the myeloprolifeative disorder cancer specialist)
diagnosis::: MYELODYSPLASTIC SYNDROME and MYELOFIBROSIS ....[MDS]
But we have a 7.9 Hgb so all is on hold WE NEED A TRANSFUSION!!! appointment in the morning to get this done

arriving in houston

2009-February-15

OK, so off we go towards Houston. Marie is going to drive,Ed is going to tell her how fast she's going and "banter" about everything,,,and I am in the backseat with Max and am going to text Amiee all day!!!!.We had lunch at Dairy Queen.As we get closer to Houston Marie is looking up motels (that takes dogs) on the GS..and we start calling ..Thats not easy,so she stops in Rosenburg (just south of Houston and goes in a Petsmart to ask for a motel directory for pets..Don't have one..So we try to find the Hospital and ask for if they have a list for motels and if they know of a dog friendly motel..Got there,,in I go to ask and yes they have a motel list but not for pets,will just have to set in the parking lot and call around and ask...Found one!!! now back to the GPS to find the motel.FINALLY! after leaving Victoria at around 11:am we arrive at the motel around 5:30pm..Get un loaded and now we're hungry...off we go to find a place to eat,,and Ed wants a banana split for supper...OK now back to the GPS,,,we find a Denny's (GPS systems are VERY overrated).MORE TO THIS STORY>>>IF YOU WANT TO KNOW >>>CALL ME!!!! but had a great banana split...I am so tired and we just got there

WOW that was fast

2009-February-12

We were contacted and set up with appointments at MD Anderson's Leukemia Center and were told to plan on 3 to 5 days up there.So we will leave Sunday February 15th, (Ed,Marie,Max and I ) get a room and settle in for a few days.Our first Appt. is Monday morning..We packed up clothes,brief cases,and the oxygen machine with 46 feet on line and we are on our way...

Dr. Qadri

2009-February-11
this was a very upsetting appt. as we were turned down for "REVLIMID".But they are going to try another approach to getting it. AND IT WILL COST $6000 for 21 days AND Insurance will only pay for $2000-----THATS $4000 TO US!!!!! you have got to be kidding!!!
Ed said NO WAY!,,Marie's mouth fell open and I said What are we supposed to do "watch Ed die"???? Marie and I both almost yelled at the Dr and he is HAS NO bed side manner.But he did tell us we are approved to go to MD Anderson and someone will be calling us soon to set up a time and Doctors name..

Marie came to visit

2009-February-9

Marie and Max (her cocker spaniel ) got to come and visit and help.

MRI

2009-February-6

Ed got an MRI on his shoulder,abdomen and chest

Citizens Hospital

2009-February-3

Ed received a transfusion of 2 pints of blood (we are now up to 8 pints)

Dr.Qadri

2009-February-3
They ran a blood test in the office and found Ed had a hemoglobin count of 7.3 and will need another transfusion.His blood pressure is very low and he said he was seeing "fuzzy" in his left eye.His spleen was still very large.We were turned down for the prescription "THALIDOMIDE" ,so we are going to try another chemotherapy pill called "REVLIMID" along with "PREDISONE".Dr. Qadri also wants us to have a second opinion and will find us a Dr. in San Antonio or MD Anderson.

Dr. Anderson

2009-February-2
An appt. with Dr. Anderson found his lung is better but he still hears some wheezing.He was given an inhaler of "Advar".

And Sam's Club is cutting hours and jobs and I am being transferred back to the cafe for the time being and I REALLY DON"T LIKE THAT JOB!!! that's why I transferred out to the lady Demos.

Andrea left

2009-January-10 thru 26
Well it's time for Andrea to go home and I will miss her very much.She has really been a big help and she and her grandpa got along great and she caught up on book-reading (all the TWILIGHT series)and TV watching...CNN & CSI (LOL).Also thanks to Lindsey for keeping the kids and managing to keep her sanity..We drove up to San Marcus today and she caught the train to Ft. Worth and got there just before the roads were closed to a big ice storm in Oklahoma and north Texas. She will get to smother her kids with love and Shane will be there in a few days...THANK YOU ANDREA!!! I will miss you very much

the bladder mass

2009-January-28

We found a bladder mass while in the hospital,but the urologist (Dr. Kopecky ) said he didn't think it was connected to the cancers so he was given "Flomax" to shrink it.Well Dr. Kopecky's office called and wanted him to come in for a check-up.I have to work today so Andrea took grandpa in to his office and he was given a cystoscopy and they did find a tumor at the base of his bladder.But with the "Flowmax" they would wait until the cancer was in remission and then go in and remove the rest of the tumor.

FINALLY!!! a prognosis

2009-January-22

Dr.Qadri (our hematologist ) office called and they have an opening today and it's a few days early.So Andrea,Ed and I get dressed and off we go with fear but happiness in our hearts as we will find out something,anything today.It has been a very upsetting week waiting to find out what we have and get on a treatment and get this cured, if it is indeed cancer.Well that was a surprise!!! What is
MULTIPLE MYELOMA???
And how do you pronounce
CHRONIC MYELOPROLIFEATIVE DISORDER???
he was sent for more blood work,a 24 hour urine test,and a skeletal x-ray with a follow-up to decide whay stage of cancer he is in on February 3rd.
he was signed up for "THALIDOMIDE" and "DEXAMETHASONE". So we go home Ed is very tired and Andrea and I talk and cry together.I am really scared now and Amiee and I are really searching for these diseases are and how they treat them.

finding out

2009-January-19th

we had an appt. today with Dr.Anderson. It is reveled he has an infection in his left lung and now has COPD.He was put on an antibiotic (Levaquin 500 mg) for 5 days and Mucinex for 1 week. So off to the drugstore and DAMN!!!! 5 pills for $45.00.OK this is going to get expensive.Thank goodness for Andrea who tries very hard to reassure me this feeling will pass....He is now on 24/7 Oxygen which a home Health Care Nurse brought out and put on Life-Line (a bracelet he wears all the time in case he falls.And we went to get a portable machine so he could go out and still have oxygen

new year-real problems

2009-January-6

our regular yearly appointment with Dr.Campbell found low blood pressure and his heart was beating erratic. He ran and EKG and wanted blood work, and an Echo gram done..

2009-January- 7

9:AM---we went in and had blood work done
3:30PM---Dr. Campbell called and we are to contact Dr. Anderson immediately,he is waiting on our call...he has a very low hemoglobin,platelets, and blood pressure...
4:pm---get him to the emergency room now....
4:30pm---arrived at the emergency room and he is admitted immediately...his hemoglobin count is "5", platelets are "41",oxygen level "79"--HOW DID HE WALK IN was all I heard!!! what the hell did all this mean..I have been scared before but this is out of my reach of understanding...I started texting Amiee and now I have someone to be scared with me.But as usual she is trying to be support for me....God only knows how she has to feel..

2009-January 7th thru the 13th

they say something about Leukemia,,and I don't even know how to spell it.He needs 6 transfusions to bring his blood count up to at least 10,but can't get it above 9.2.He is put on 24/7 oxygen,and his Atenolol is cut to 25mg.He is given a Echo gram,x-rays,and the dreaded bone marrow draw.They have found Multiple Myeloma.Thanks to Amiee,who starts searching everything she can find on the disease we are learning "QUICKLY" not only how to spell but to pronounce some of this stuff.Then they find he's got a left lung infection,so now he is getting antibiotics.Shane calls and wants to know if Andrea comes will she a help or a hindrence to me..GET HER HERE NOW was all I could think.Amiee is sending out the e-mails for me calling Eric and Larry.Butch is in Iraq and someone felt the need to contact him and that upset me as I felt he didn't need to know too much before we could give him some news and right now Ed is not going to die any minute,and he is being cared for and we don't need to scare Butch while he is over there.But instead of calling me and asking for a progress report or even asking about him,,,someone decided on their own to go over my head.I was hurt and when I told Ed, he was hurt and angry.

how it all started

2008-January

We had a regular appointment with Ed's cardiologist ( Dr. Campbell ) to get his yearly prescription of Atenolol 50mg refilled.He weighed in at about 40 lbs less than the year before and his toes were turning a little purple and his left shoulder was hurting him.I told the doctor he had pretty much lost the weight over the last summer and during the holidays.Dr. Campbell told Ed he felt he had some kind of cancer in his body and wanted him to find a primary doctor and have some tests done.So we found Dr.Kevin Anderson. The first thing Ed wanted was to find out why his left shoulder was hurting.They throught maybe he had torn the rotocuf as he had already had the right done a few years earlier.We had tests done on that and found no tears but did see what could be diagnosed as some arthritis.So they gave him a steriod shot and some exercises to do.They also did a colonostopy, EEG,complete blood work and mri and x-rays on his shoulder,which did stop hurting so they gave him another steriod shot.All tests came back INCONCLUSIVE! By now it was time for vacation,and Dr. Anderson told us to follow up with an appointment when we returned. Well that didn't happen! And as a very few of the family know I kept telling them THERE IS SOMETHING WRONG!!! Those who didn't think I was right said leave him alone and those who were around him most said I should follow-thru.,,they could see the change also.But Ed was feeling pretty good and didn't want to be probed anymore so he wouldn't go back.Thanksgiving Day he decided to quit smoking and had lost more weight and started to become weak and tired.By Christmas he was pallor,weak,slept alot and everyone around him noticed.He would not go to the doctor and yelled at me to leave him alone.His next appt. is with Dr.Campbell Jan. 6th,2009........

just a word of note

This site is going to be dedicated to Ed who has the cancers, but it also has to do with the caregiver who is me.We both go through !A LOT! of traumas and feelings along the way and as most of Ed's family and friends know he is not the one to show emotions or think out loud and I on the other hand, !DO! So this is sort of my journal to keep everyone informed of his progress, and challenges but to also vent my feelings, and challenges.