Insurance approved new medicine!

Received a call today from my oncologist office.  The new medication for my chemo treatment, Treanda, was approved!

With that news, also received confirmation of chemo on Monday and Tuesday.  Wednesday the Neulasta shot.  It is a shorter treatment than before.  Three months on this schedule once each month, then a MRI scan.  If all looks good, another three months, and then another scan... and it goes on.

Now, I know that I am pushing my luck... but want to try and get my primary doctor to convince the insurance that I need to use Lantus insulin rather that what I am on.  The Lantus has a longer life, and will regulate my glucose better.  It is also expensive, so they have refused to pay for it.  If not, I will wait until I get my supplemental insurance the end of this year.  Hope that it will pay for Lantus.

Yesterday's oncology appointment 03/21...

Hi everyone! Hope your week is going well.
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I apologize that this post is the same as the post on the CLL forum.  I just don't have the brain power today to do a second one, and wanted to get this information out to those I promised I would.
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My week has mixed messages, but I am going to focus on the blessings, and not what if's.
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I went to the doctor/oncologist yesterday. He went over the latest CT scan, MRI scan and blood test results. Good news first.  The mass around my renal artery is down (confirmed) to the point the scans are no longer distinguishing the difference between the lymph note and the mass. Before you could see the mass, attached to the node and surrounding the renal artery.  Now, the doctor cannot see this growth! And no, the bathroom scales are not showing a loss of weight due to the loss of mass.  You know, that is not fair!
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The cancer within my kidney is difficult to judge. It is not a normal mass, but a mushy/cloudy substance filtering thru the entire kidney and its tissues. The oncologist discussed this at a conference with other doctors about treatments and radiation. Radiation was agreed on only for a later resort. Surgery is not being considered because the right kidney is still functioning and helping out my left healthy one. So, now comes the fight with the insurance company.
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Again, I have an advantage plan contracted with Medicare. In this state (Washington) due to an attorney general ruling which I don't understand, I cannot buy supplemental insurance until I turn 62.  This decision covers me even though I am on disability social security/medicare. If I could afford it, nobody will sell me a policy with my pre-existing conditions. The insurance /medicare thought is if the F&R didn't help, why go to the expense of another treatment. Doctor is calling to explain that the F&R did help, just not much.  My kidney function is a tiny bit better, there have been no developing growth (from the cancer cells circulating in my blood reference the leukemia)since chemo began, and the renal artery issue is much better. With that he thinks he can convince the insurance/medicare to let me continue with Rituxin and include Treanda, along with the other meds given during chemo.  He could add the C to the F&R (FCR) treatment, but it is much more toxic than what he is recommending. The Treanda is more cost than what I was on... that is the problem. If the recommendation is declined, I have to wait for further treatment until I can change to supplemental insurance. My insurance window opens late October. So, further treatment would not take place until approximately November.
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Pray for an approval from my insurance and medicare.

Hope for tomorrow...

Just a note:  During this time of the Japan earthquake/tsunami disaster, the information being reported is mixed.  I would rather hear the truth, even if it is not what I wanted to hear.  I cannot believe that this radiation release will not have a bigger effect on the people of Japan, and the world , than we are being told.  I do not want to be an alarmist, just realistic.  Now, I am told there is a post online that the Navy is taking away personal phones and computers on ships near Japan.  Is this so information leaks will be at a minimum?  If this post is to be believed, what is there to leak?  While in Kennewick, at my doctor appointment, my sister and I stopped at the health food store(s) to check on their supply of Iodine.  None.  And, unable to get any further supplies for a while. I am told that there is a government stockpile.  That information might be correct, but how long will it take to have it available for consumption to the average citizen?  Maybe I am worrying over nothing.  And yet, I pray that 15-20 years from now I don't have family being diagnosed with cancer due to this.   

Thursday, 03/16
It is so nice to have the weather changing into Spring.  The drive into my doctor is so much more pleasant without ice, snow, and rain.  The wind, as we do have that during Spring, can be managed.  But, there are times when driving the wind is so hard that it plasters the tumbleweeds against the car.  On occasion, we have had to stop the car and pull off the tumbleweeds. 

Arrived for the MRI test, and find that I need another IV.  It has been a while since my last MRI, and I forgot that this was the machine with the long tube you are enclosed in.  On top of that, I am not good at holding my breath... and the entire test is "breathe in" and "hold."  When I quickly breathe in, my asthma kicks in and I want to cough.  Try holding a cough in, and keep your abdoman extended. Really it is not bad if you are not claustrophobic or have asthma.  If you do have these issues, the short test can appear long!

Afterwards wanted to go eat!  Had to fast before the MRI.  Gloria and I went to a new Italian place in Kennewick.  Since I have been having an issue with tomato burning my mouth, we ordered pizza with olive oil and pesto sauce as the base.  Wow, never would have believed it... better than with tomato sauce base. Only ordered a small pizza as I was going to my doctor in two hours

Then, went to primary doctor about my diabetic issues.  He said that as long as I have chemo/steroids, inhaler/steroids, and other issues that my glucose levels would be up.  I have to test several times a day, and now insulin shots twice a day.  The amount goes up daily until my glucose reaches an acceptable number at twelve hour intervals. 

I am doing more in-depth research into N-Acetyl-L-Cysteine and Alpha Lipoic Sustain.  This promotes Glutathione and is a precursor to Glutathoine.  My sister says that since she has been on this her blood pressure is better.  I have also read that it may help my glucose levels.  So... read, read, read and hope I find something that will help.

Today (Friday, 03/18) I would like to send prayers for a cancer surgery that is taking place in Seattle right now.  Once of my son's co-workers (Washington State Patrol) is having a serious cancer surgery.  I am proud of the local Tri-Cities police/justice community and how they have come together to help this young man and his family.  This is going to be a long recovery.  I believe with God's influence, a blessed recovery is possible.

Enthusiasm is contagious.  You could start an epidemic

Author unknown

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My father was part Irish.  He would not let us believe in Santa Claus;
but, as children under his direction, we always put a treat out for the
 "wee people."  Happy St. Patrick's Day!



Chemo was cancelled, more tests...

Attitude is everything.  You simply cannot be beaten if, at the end of the day,some tiny part of you can still whisper, "I will try again tomorrow." 

Author unknown

There have been so many tragedies in the world, the latest being the earthquake/tsunami in Japan.  My thoughts and prayers go out to them, as well as other parts of the world where there is suffering.  Not everything makes media headlines, but the suffering is just as real.

My daughter has recently passed her California Insurance Exam and is training with Aflac.  The reason I bring this up is the earthquake(s) in Japan.  From her training she has told me that this company has a huge presence in Japan.  I was worried about how the people would be able to prove injury, death, anything at this point.  Their homes are gone, along with personal records.  City Hall's are gone, people are missing... how will they prove a claim?  I was delighted to hear that Aflac is going to be extremely reasonable with those claims, the people have suffered enough.  I am not promoting Aflac, just praising a large company for being compassionate.

I have a sick tooth...  

Sunday, 03/13.

I have read that during chemo treatment you are not supposed to have any dental work.  Great... I have a tooth that is hurting.  This coming week I am going to ask if I can go to the dentist.  Since I am at the end of my chemo break (4 weeks) I have just begun to have reduced glucose readings.  They have been in the low 200's, even down to the high 100's.  With chemo comes the steroids, which means my glucose numbers are going to go up again.  Drats!  The side effects of CLL and its treatment involve more than the cancer itself.  I know that infection is of great concern, then throw in my bleeding problem... what to do?

Monday, 03/14.

This morning started off as any other chemo week.  Once I got to the doctor's office I was anxious to review my latest CT scan.  First off, the doctor told me that he was cancelling chemo because he needed more information to be able to decide what the best course of action would be going forward.  I think he is having to justify his actions to the insurance company.

The doctor told me that the mass around my right renal artery is no longer visable, at least on the current CT scan.  That was reason for me to sing praises!  The right kidney is difficult to determine improvement, if any, from the CT.  There was no evidence of any new mass formation.  Much of the news is an answer to prayers.  All of this will be confirmed with a upcoming MRI on Wednesday, 03/16. 

The doctor was frustrated as he normally has a mass (lump) he can measure to determine increase or decrease in size.  However, mine is different.  Of course, I don't do anything simple!  The cancer within my right kidney is cloudy/mushy, filtered in the empty area and tissue of the kidney.  This makes it difficult to measure.  So, the doctor has ordered an MRI, which is where the diseased kidney was located during the diagnosis process.  I was told CLL is systemic, therefore removing the right kidney would not cure the lymphoma/leukemia. 

My right kidney still works good enough to help the left kidney.  We don't want to remove it and put more stress, as well as my diabetes issues, on the healthy kidney.  On Monday, 03/21, I go into the doctor to review the MRI results, and current Creatine and GFA results. 

The doctor, along with my insurance, will decide how to proceed with treatment.  Of course the insurance company is going to try for the least expensive method, as well as consider whether or not the amount of money is going to a worthy cause.  Since January 1, I have found that my doctor is having to discuss everything, routine or not, with the insurance company.

Either you control your attitude,or it controls you. 

Author unknown

Had my CT scan yesterday...

First, let me say that yesterday was (sarcastically I say) fun.  I thought that I was being so smart and put  numbing cream (lidocaine/prilocaine) on my port and right hand before the CT scan IV was put in.  First time I remember to apply it correct, and the nurse takes my left hand because it was on the side of the machine more convenient to her.  Then she tells me that since I will need the IV hookup when I go to short stay, a large needle would be needed.  At that I (politely) said, "Uh uh... please use my right hand and drape the cord over me."  I'm not afraid, sort of... just getting tired of the pokes.  This was the IV for the iodine dye, which did not set well with me this time.  If you have had this test, you know the feeling of being flushed and think you are wetting your pants.  Which by the way could be embarassing, one never knows until after the test if it is real or imagined.  That's why I always wear black pants when having a CT scan.  Smart of me huh?

Anyway, after the test that feeling came back on me, as well as a very sick stomach.  In addition, the stress of it all caused my asthma to kick in.  The stort stay nurse called my doctor and he prescribed an IV of Zofran.  It is the medicine that I have received in ER for a sick stomach.  For whatever reason, my 45 minute IV turned into almost four hours in short stay. 

The hydration IV was a large one, so it took a while.  The reason for the hydration IV was to give my body a boost towards pushing the iodine dye and contrast through my system quicker.  The Barium Sulfate Suspension contrast that I had to drink before the test, and the iodine dye during the test,do not filter well through my kidneys.  That was the purpose of my taking the NAC (N-Acetyl Cysteine) the day before and day of the test. 

With that said, I need to clarify something.  In my excitement and haste to post this information regarding NAC, I did not finish reading and find the following warning.  NAC appears to be a great supplement, for a number of reasons, but not for everyone!  I, for instance, should not take this on a regular basis.  Drats!  It seemed like a good thing for me.  But, since I have a sulfa allergy, am a diabetic (blocks insulin), promotes antioxidants (not good when on chemo), fights chemo brain (the boost is not allowed during treatment), dairy intolerance, etc. I cannot take this.  Okay, another warning... drink your water while taking NAC!  If you don't drink plenty of water, kidney stones may develop.  I still feel that "if" you can take it, NAC looks like a good supplement.  Please read up on it, discuss it with your doctor, before making this a regular supplement.

A couple of tidbits...  On 11/12/10 I posted about insurance.  I guess I didn't read as well as I thought or ask all of the questions that should have been asked.  It seems like there are changes that I was not aware of.  Most recently, some medications are not covered.  Fortunately, the actual cost was not much.  I find in discussing this with another chemo patient, there is a loop hole.  If you ask your doctor to schedule an injection of the medication, it is covered under Medicare B (does not have a donut hole).  Check to see if this is the case with your insurance.  Injection form, yes; pill form is a no.  My diabetic testing supplies are no longer covered under the B program.  I have to get them from the pharmacy, which will cause me to reach this year's donut hole faster!  I guess since my insurance is contracted with Medicare, when Medicare makes a change the insurance company goes along with it.  This is my understanding, from what I have been told.  Hope my chemo brain hasn't distorted the information. 

Have you been to a thrift store lately?  Wow!  The economy has hit there too.  Went into one and found that blouses were as high as $9.99-$12.99.  My sister and I found jeans average price $6.99-$12.99.  I even found a purse for $89.00, and jeans for $49.00!  Buying a used book is not as cheap as it once was.  We also noticed that the amount of inventory was "down" in the thrift store(s).  Yet, when you have a yard sale people still want the blouse for a quarter, jeans under one dollar, etc.  To replace what you have sold at a yard sale is going to be expensive during this economy, whether or not you buy new or used.  Suggestion:  Locate a used book store that will take a book purchased there as a trade-in.  You will pay less for the initial purchase, and get money towards your next purchase with the trade-in. 

Never take a person for granted.  Hold every person close to your heart cause you might wake up one day and realize that you've lost a diamond while you were too busy collecting stones.

Author unknown

Pre-treatment for CT scan...

As I said in yesterday's post, before a CT scan is given to me pre-treatment is necessary. The oncologist prescribed NAC 600 mg for me to take the day before and day of the test.  After a difficult time locating it, and paying my co-pay, I find the following out.  NAC can be purchased as a supplement, that is why the pharmacies did not have it.  I paid more for four pills that what it would cost to buy an entire bottle over the counter.  Anyway, from what I have read this NAC will help my kidney process the contrast administered during the test.  I am surprised that I have not been told about this before.  From the articles below and others, it would appear to be a good supplement for me to be taking all of the time.  I will have to ask the doctor about this.  Then, after the CT scan I will have an IV to help get my system to flush at a faster rate.
 
N-Acetyl Cysteine
medterms.com/script/main/art.asp?articlekey=24130

Acetylcysteine: An drug used to reduce the thickness of mucus and ease its removal. It is also used to reverse the toxicity of high doses of acetaminophen. Acetylcysteine with hydration significantly reduces the risk of contrast nephropathy in patients with chronic renal insufficiency. Also called N-acetyl-L-cysteine.
　

Defination of Contrast Nephropathy
medterms.com/script/main/art.asp?articlekey=24132

Contrast nephropathy:  A form of acute renal failure that starts soon after administration of contrast media (dye) for X-rays. The disorder usually runs a benign course and only rarely requires recourse to dialysis.


N-Acetyl CysteineExcerpt from
vitaguide.org/n-acetyl-cysteine.html

"NAC is used by hospitals, in very high levels, to treat patients with acetaminophen poisoning. It also contributes to the synthesis of the antioxidant glutathione, has proven to be effective in preventing kidney damage brought about by injections of iopromide (a contrast medium used in people undergoing CT imaging), and has been helpful in treating liver failure caused by drug toxicity, hepatitis, and more."

 "One study reported that the incidence of kidney damage dramatically dropped by 86% with the use of NAC. In that particular study 400mg of NAC were given twice a day on both the day before as well as the day of the procedure. Other studies related to this matter have shown NAC to be effective only when a low amount of dye is used. "


Glutathione: New Supplement on the Block
Excerpts from article from the following
medterms.com/script/main/art.asp?articlekey=50746
By: Alison Palkhivala, Web MD Feature

"If you look in a hospital situation at people who have cancer, AIDS, or other very serious disease, almost invariably they are depleted in glutathione," says Appleton. "The reasons for this are not completely understood, but we do know that glutathione is extremely important for maintaining intracellular health."
　　

Trip to Oncologist...

Yes, the day began early... but clear weather, no rain or snow, in the 20's; yet, sun came out and the day was in the high 40's (maybe even low 50's)!  Not quite beach weather, but... This was nice for the drive and time in and out of a car while going to appointments, and running errands.  I am so ready to put an "all points bulletin" out for Spring.

I have to back up and say "I'm sorry" for stating that I thought the doctor's visit would be for nothing, and a waste of money for the day.  Just because I assume that there is not a need for an appointment, doesn't mean there isn't.  I spoke with my doctor about this issue, and he explained the behind the scenes issues.  With that said, I did learn during my appointment that I would now be officially diagnosed as chronic kidney disease.  This is due to the low GFR numbers I have had for several months.  For this reason, I have to do pretreatment before any CT.  The reason for pretreatment is that this scan, and preparations around it, will be hard on my kidney (right one with the cancer in it).  I have to take pills the day before and day of the CT, drink radioactive contrast the morning of  the CT, and after the CT go in for an IV to help my system flush the contrast out.  The doctor is looking for any size difference in the mass within the kidney, and the mass around the renal artery.  I wonder if the CT scan will show any size difference of my waist and hips?  Ha ha, like a reduction there is going to happen. 

On other issues... my lips have been very sensitive.  When concentrating, or under stress, I have always chewed on my lips.  Well, with this bleeding disorder I have to somehow stop this lifelong practice.  My bottom lip, on the inside, is like a blood blister.  Then my cheeks have been swelling, and I keep biting the inside of my cheeks.  They are a mess too.  So, this morning I took a Benedryl thinking that with my cough, and the swelling, maybe an allergic reaction?  Shortly after taking the Benedryl I stopped wheezing and my cheeks are less swollen.  During chemo the doctor prescribes for me a large dose of Benedryl.  This time of the year I always begin allergies which puts a stress on my body, and that's when asthma kicks in.  I am going to try Benedryl for a few days and see what happens.  If I can get away from inhaling steroids, that would help my glucose numbers come down a bit.  And if steroids are puffing me up, well ... I don't need help adding another chin and hangover eyes. 



CT (Computed Tomography)







My scan will be similar, only the
right kidney will be much larger. 
The mass on the right renal artery
will show too.  From here the doctor
can look into the area and see the
mass, measure it, etc. 



Due to my glucose numbers being high, I have been increasing the insulin amount by one unit each day.  I am up to 36 units, and still in the 200's.  I have started a food log, watching everything consumed, and continue to increase the amount of insulin.  From what I hear, after completing chemo there will be a transition time adjusting insulin down as my glucose levels drop.  They will drop due to stopping the doses of steroids.  I also discovered that all of my numbers react to the amount of (legal) liquids consumed during the day.  Now, where is the weight loss?  Not fair! 

Three times now I have gone into get different prescriptions filled and find that the pharmacy does not carry what is needed.  Infact, again this time, I am told it is seldom requested medicine.  After many phone calls and standing in line(s) at more than one pharmacy, the medication needed for the CT scan was located.  A small independent pharmacy that has been across from the hospital for decades had what I needed.  Another surprise, it is not covered by my insurance.  Fortunately the cost was minimal. This is happening to many.  When standing in line to wait my turn, I continue to hear "What!?" People questioning why they owe so much to the pharmacy.  I felt sorry for the clerks.  They continued to advise people to call their insurance company.  Times are getting harder on anything to do with medical.
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Before heading back to Royal City Gloria and I went to eat.  My family has always given me (in humor) a bad time about my addiction to the carbonation in diet cola.  If the stuff doesn't have bubbles, why drink it?  Anyway, my sister and I started laughing when we heard the lady in the next booth.  She was complaining of the taste and lack of bubbles in her diet cola.  Gloria looked at me in disbelief, and we really tried to keep our noise down.  You know how it is when you should not be laughing, then cannot stop.  And everyone thought I was the only odd one when it came to bubbles in my drink.  If not poured in the glass, or onto prepared ice properly, the bubbles are popped.  That is wrong!  

Continuing on... we are driving on Hwy 395, just approaching the turn off to Hwy 17 (driving home) when Gloria startled me with a "turn into this area!"  So I, with a car right behind me, turn on a dime off the road and into a pull off area.  When realizing it was because she wanted a cigerette, I told her that she couldn't have one right then.  She would have to hurry and get out, bend over and play like she was sick.  Gloria looked at me like I was nuts, but I didn't want the car behind me thinking that my driving was stupid for no reason...  I guess that is better than mistaking an empty pop (diet cola) can for one I was drinking out of.  It wasn't, that can was being used for her butt's so that she would not litter.  Wow, that time was an eye opener!  She still laughs at me over that.  Our brains are on opposite ends of the scale, her with a brain flash and me with chemo brain. 

It doesn't stop there, the trip continues to prove interesting as well as entertaining.  We laughed a lot "after" realizing my oops! Pulled off the road to get some gas, then by the time I got parked something else was going thru my brain.  Parked infront of the store, not at the gas pumps and would have probably ended up in the store wondering why I was there.  Gloria saved me, and advised me that we were there to get gas, at the pumps.  After we were back on the road, the last leg of the trip on Hwy 26, I said..."the turn off sign to Moses Lake/Mesa has got to be soon, it seems like we have been on this road forever."  Knew I was in trouble then when realizing that we had left Hwy 395, already driven Hwy 17 and was now on Hwy 26 close to home.   Oh it is going to be a happy time after chemo and my brain wakes up.  Gloria likes to see me do this from time to time, so that she doesn't feel alone when she has her oops moments.  It takes so little to entertain me...

I ran into an acquaintance yesterday who immediately started her conversation with, "Oh Marie, I just heard the news! How are you feeling, and dealing with it, etc. etc." I have been replying to people with positive conversation, and that I have turned this over to the Lord. More conversation about how I am blessed with realizing that I need to embrace each day, not procrastinate and waste valuable time, interaction with those you care about, etc.  Remember... This is the day the Lord hath made... rejoice and be glad in it... (I put this in especially for you Gloria.  She likes this verse that mom quoted to us each morning as our wake up call.)