Ninlaro -- Word for the Day -- Wednesday, December 16, 2015

Ninlaro -- November 20, 2015 FDA Approval

Today the U.S. Food and Drug Administration granted approval for Ninlaro (ixazomib) in combination with two other therapies to treat people with multiple myeloma who have received at least one prior therapy.
Multiple myeloma is a form of blood cancer that occurs in infection-fighting plasma cells (a type of white blood cell) found in the bone marrow. These cancerous cells multiply, produce an abnormal protein and push out other healthy blood cells from the bone marrow. The disease may result in a weakened immune system and cause other bone or kidney problems. The National Cancer Institute estimates there will be 26,850 new cases of multiple myeloma and 11,240 related deaths in the United States this year.   
“As we learn more about the underlying biology of multiple myeloma, we are encouraged to see the development of new ways to treat this disease,” said Richard Pazdur, M.D., director of the Office of Hematology and Oncology Products in FDA’s Center for Drug Evaluation and Research. “Today’s approval is the third drug for multiple myeloma approved this year and provides patients with a new oral treatment that slows disease progression when other therapy has failed.” The FDA approved Farydak (panobinostat)in February and Darzalex (daratumumab) earlier this month.
Ninlaro is a type of cancer drug called a proteasome inhibitor and works by blocking enzymes from multiple myeloma cells, hindering their ability to grow and survive. Ninlaro is the first oral proteasome inhibitor and is approved in combination with another FDA-approved treatment for multiple myeloma called Revlimid (lenalidomide) and dexamethasone (a type of corticosteroid).
The safety and efficacy of Ninlaro were demonstrated in an international, randomized, double-blind clinical trial of 722 patients whose multiple myeloma came back after, or did not respond to, previous treatment. Study participants received either Ninlaro in combination with lenalidomide and dexamethasone or placebo plus lenalidomide and dexamethasone. Those taking Ninlaro lived longer without their disease worsening (average 20.6 months) compared to participants taking the other regimen (14.7 months).
The most common side effects of Ninlaro are diarrhea, constipation, low blood platelet count (thrombocytopenia), peripheral neuropathy (numbness and pain from nerve damage, usually in the hands and feet), nausea, peripheral edema (fluid under the skin causing swelling), vomiting and back pain.

Jim will begin this treatment after the holidays and will be on it for six months.  I will give more updates later. 

Adamantine - Word for the Day -- Wednesday, Decenmber 9, 2015

Adamantine   \ad-uh-MAN-teen\

 

Definition:  adjective – meaning

          -made of or having the quality of adamant

          -rigidly firm: unyielding

          -resembling the diamond in hardness or luster

Well, it won't be long until Santa harks at our door.  I cancelled my cast iron order today.  I ordered it almost three weeks ago and it hasn't shipped, yet.  Soooooo, I have saved a lot of money.  Now to see how long it takes my funds to get back into my account.  And, it will give me a chance to better look into getting Jim that recliner I have looked at for two years.

We had wood delivered this morning at 7:30 a.m.  This elderly gentleman backed his truck up our neighbors drive and he and Jim commenced to throwing the logs over the fence.  I haven't seen him that active in a while.  As he came back in to get ready for work (a trip to Russellville), I asked him if he got in a good work out.  He was shirtless and raised his arms like he was a body builder.  My heart was both overjoyed that he was able to throw the wood and saddened that his little arms look smaller than mine.

He is down to 175 lb. which is 30 lb. off his normal weight.  His energy seems to be coming back up, but we are still having difficulty with his appetite.  He did buy some ice cream yesterday for the apple pie I fixed Sunday.  He ate one hot dog, which was actually a fried weinie sandwich on a hamburger bun because he forgot the hot dog buns.  LOL

His labs are looking very good, except I had to increase his magnesium tablets to four a day instead of two.  Plus, he got a bag of magnesium in clinic on Monday.  I reminded him Sunday it was time to do a 24-hour urine bottle for Monday.  He did that, but I also noticed he only had about 2 in. in the bottle when he left.  I also noticed he hasn't been doing much liquid.  He has had more root beer and Sprite, but those drinks are so harsh on one's kidneys.  And, they are a sure fired trigger for kidney stones.

Sure enough, when he got to clinic he had to have a bag of fluid.  They weren't happy about the urine collection.  When he called to let me know he would be late because of it, I just replied, "I knew it!" 

Although his platelets are down to 90, his WBC has zoomed up to 10.65.  They were 8.60 last week and if you remember, they were 2.0 about five weeks ago.  The high range is 9.50 so his babies are still making.  His hemoglobin is sitting at 11.1 and if he is at 8.0, he gets a unit of blood.  So that is staying up to a good level.  His crap is minus 5... YAY

We have tried to get back into our day-to-day routines with Christmas approaching us.  I remember just a couple of months ago while he was sick and we were lying in bed I told him I needed him around for Christmas.  Now I think to 'myself' I hope he is around for next Christmas.  It slays me to think those thoughts and I wonder if he thinks them, too.  We just don't discuss those things because we know God is in control.  ONWARD!

We won't be having a big Christmas and we have discussed not even decorating, but there are a few things we MUST put out in memory of my mother.  We will be staying home and doing some small things.  I have promised him I would fix meatballs for dinner and of course, I have to do dressing for my Baby Boy.  Baby Boy will be doing deviled eggs and heavenly hash. 

We have planned a Date Night tonight.  Not at our usual place and not on the usual night, but with some of our Date Night kids.  We haven't been able to do our weekly Date Night since June. 

Please pray for us as he has his PET scan at 6:15 a.m. tomorrow with an MRI scheduled for 11:30 a.m. and another at 5:45 p.m.  That doesn't include labs and a visit with the Data manager.  We start over again on Friday morning with that dreaded bone marrow biopsy at 9:00 a.m.  He will be able to sleep through that while I sit in those uncomfortable chairs in the waiting room while I prepare myself to load him up and cart him home afterward.

I will ask you to pray for us again on Tuesday at 1:30 p.m.  We have our follow-up appointment with Dr. Z.  We will find out then if the chemo and stem cell transplant has been a success.  I'm ready for this man to blossom out like the Michelin Man.

I blew leaves in the back yesterday and got 3/4 of the yard done.  When Jim got home is was dark and I was still blowing.  So, glad I have flood lights in the back.  Just as I was going down the hill for another round, I ran out of gas and didn't have extra in my gas can.  Bummer.....  So, I plan to finish up on Friday as he is sleeping of anesthesia and before the rains come in on Saturday.

Good afternoon and Love -- Pepper

I didn't use the Word for the Day.... I forgot!  Damn Old Age!

Stress - Word for the Day - Sunday, December 6, 2015

Stress -

Definition: 

In a medical or biological context stress is a physical, mental, or emotional factor that causes bodily or mental tension. Stresses can be external (from the environment, psychological, or social situations) or internal (illness, or from a medical procedure).

If you have never looked at the full definition of this word, please take a minute to search.  The best definition is on MedicineNet.com.  I don't know of anyone that isn't under some kind of stress.  I think the question would be: how do they handle it?  Break down (as a form of release) or stay strong (because if you show weakness, you are weak)?


What a busy week we had!!!!!  We so enjoy the days off for the holidays, but it seems it takes longer to keep up.  Old age, I suppose.  Jim has been staying quite busy at work.  A lot of things going on.  I'm so happy he is getting stronger.  Still working on his appetite.


He has lost near 35 lb.  His normal weight is 205 or 200.  He is now at 176.  His color and skin look great.  His BP is staying at 100.  I still have him on the Midodrine.  I would be concerned he would be back in the 97s if I took him off. 


We have a busy week ahead of us.  He's wanting to put my truck in the shop, but we both have so much going on at work.  I have suggested we wait until next week.  I heard a lot of grumbling.  We just have too, too much to do.  Get wood, doctor's visits, put my truck in the shop, tests on Thursday (PET, two MRIs) and the bone marrow biopsy on Friday.  We begin at 7:00 a.m. on Thursday and the last appointment at 5:45 p.m.    Yep, it's gonna be a stressful week.


Back to his appetite.  We had our biker groups Christmas party last night.  There were 15 of us.  I was suppose to make chili and apple dumplings.  After breakfast yesterday morning our kitchen sinks stopped up.  We worked on it all day.  Three bottles of Draino later, we knew it was hopeless.  So, we took two meat/cheese trays and WalMart bakery cupcakes.  Best cupcakes I have eaten in a while.  We had so much food and such a variety that Jim went back for three helpings.  Not a lot of anything, but a little of everything. 


Today I made an apple pie with granny apples and the chili I was suppose to take last night.  He ate two bowls of chili and a piece of pie.  So, I'm hoping the variety of food brought back his taste buds a little.  He told me Friday he really needs to start gaining some weight.  He is wearing his pinky ring on his third finger.  We have discussed that if his body is not getting nourishment, it cannot heal itself and grow they babies.


I see the changes in his body every day.  I know he must see the changes himself when he looks into the mirror.  He is Jim inside and out, but his body is changing.  But!!!!!! He looks better than he did in June when all his illness began. 


I don't know how he handles the stress.  I have found myself of late having difficulties I had not realized existed.  We take his BP a few times a day.  We never check mine.  Until Monday when I felt unusual.  We checked it at 138/86.  I am a true 120/80.  Tuesday it rose as high as 169/94.  I went to the doctor and they made a cardiologist appointment for Wednesday.  Long story/short.  BP meds and a script for an anti-depressant.  Although, the doc didn't want to use that word.  Even though I don't feel stressed, my body is trying to tell me I am. 


I quickly discovered after only one pill for the BP that I can't take them.  I stayed in bed all day Friday because I kept feeling like I was going to pass out.  Even in the shower.  My BP yesterday was normal all day without the pills.  Doctors!!!!!


Jim really babied me all week.  It felt good to have someone waiting on me.  He worked late all week, came home and fixed dinner and fed me in bed.  I may have to retire and lie around all the time... LOL


I was missing him yesterday and thought maybe he was taking a nap.  He fixed bacon, biscuits and scrambled eggs for breakfast.  That's when the sink stopped.  We were cleaning out the frig.  When I began searching I saw smoke out in the dog yard.  He was burning the big pile.  He burned on it about two hours.  He went down today and burned some of the same pile off.  He came up and was sitting the garage rubbing his right shoulder.  He said it was very sore from splitting word yesterday.  I gave him "my look"!  I told him he wasn't well enough to do that stuff.  I truly hope I didn't hurt his feelings because he said he was well enough to do what he wanted.  I looked at him and laughed and said, "Yeah, but you gotta start out slow..."  I'm gonna put heat on it tonight.  I think he learned his lesson.


We are both sleeping very well.  Even with the kids in bed with us.  We are taking turns letting them out in the middle of the night if they have to go.  I am usually kicking him and telling him it's his turn.  :)  They didn't get up at all last night, but I think tonight they will be in the sunroom.  I need to stretch out sometimes and they don't budge. 


Let me apologize for not writing sooner.  Getting out last night and doing a lot of laughing was a big help.  We almost cancelled.  Today we decided to do what we wanted on the spur of the moment.  So, he worked outside and I cooked.  We gave ourselves choices.  Mine was blow leaves, lie around and watch movies, cook or we could go shopping.  I did tow of mine and he did two of his. 




Good night and Love -- Pepper