Peritoneal Cancer Journey Phase XVII

It is May 30^th my next Doctor’s appointment is here and I have to admit I am a bit nervous.  Not to sure where we are going from here.  I am putting out there that my CA dropped significantly…  and guess what, my CA-125 did dropped!  Yippeee!!!  By over 400 points to 3,034, phew, big sigh of relief…  Of course I was hoping to drop by 1/2 …  I am very happy with over 400, definitely in the right direction.  Great Birthday gift for me…  My birthday is May 31^st…  my steroid high day…  We are going to stay with the same treatment this go around.  I will have the Neulasta® shot on Thursday.  My white cells are doing good and my platelets really jumped up to over 241,000 in like 10 days, my happy pump out the blood dance worked <smile>…  My hemoglobin is good too so everything is a go...  My exam was really positive…  So off we go to the infusion lab… 

My Chemotherapy infusion goes uneventful which I am always very happy with.  We started with the prep drugs (the benedryl, steroids, and I take my E-mend) to prevent reaction and minimize nausea.  Then we proceed to Avanstin, then to Doxel (looks like red coolaide, which is what I call it…), then to Carboplatin.  During this I read a book for a bit, napped a bit and listened to my momma jams play list.  It was over with pretty quickly or at least it felt like it didn’t take to long.  When we got home I had lunch then napped the rest of the afternoon away.  That is a good thing.  I find it interesting or maybe funny how tired you get when you have a treatment, just sitting around.  So the boy cats and me nap the afternoon away…  Not a bad thing.

Because my red cells took a big hit the last go around, I have an extra blood draw that we didn’t plan for on June 11.  We planned on going to Detroit, MI for UNITY Peoples Conference that week.  We had to find a Quest Lab there so I can get my blood draw done on Monday.  Lynn has a cousin who lives just outside of Detroit so that worked perfect.  So she helped us find one and I scheduled an appointment.  We met up with cousin Deb and her husband for lunch on Sunday and caught up, which was so much fun…  On Monday I had an appointment with Quest.  The tech I met, Desiree was wonderful.  The coding is different there then it is here in the WNY area.  So she had to spend 45 minutes with me to clarify what tests my doctor was requesting.  We talked about why I was in Detroit and parted with a hug.  It was some how very comforting to me feeling that I am good hands.  During the conference I received a call from my chemotherapy nurse Laurie.  When I answered my cell phone I must have said “uh oh” out loud… laughing…  She heard me and said did you just say uh oh…?  I said yes I did, when you call that means one thing, my numbers are low…  She said, yes and the Doctor wants to you to have more lab work tomorrow.  She said we know you are out of town and we tried to get him to wait on the blood work, but alas his comment was “there is a lab there she can go to”…  laughing…  Anyway my hemoglobin is down to 7.4, which it has been before and my platelets are down to 26,000, a bit lower than last time.  My white cells are doing great.  So that is great news to me, I am not susceptible to infections, just bruising and bleeding…  She asked if had the contact information for the lab I went to, since we know you are out of town.  Yes, I went out of town without telling them…  That normally is a non-appointment week so it didn’t occur to me to say anything...  We drove to Detroit as it only takes about 5 hours and the conference sounded fun with speakers that I really was interested in hearing.  I did have the phone number and address with me for lab we went to.  So I gave it to Laurie, she said their faxed number would be on the voice mail.  So she faxed my new order to the lab.  So Lynn and I ventured back out to the Quest in Center Line, MI and the Tech Desiree was there, I smiled and said I am back…  Smiling.  She said I see that and I did receive your doctor order and am all ready for you.  That visit took like 2 minutes…  I did have to have blood work again before we left Detroit; I had to go on Thursday…  My platelets were down to 24,000 and my hemoglobin was down to 7.4…  Okay that is really low.  Lynn is now worried that I would have to be in Detroit longer to get a transfusion and that wouldn’t work well as Megs 21^st Birthday celebration dinner was planned for Friday evening 6/15… Can’t miss that, that would be awful…  So Thursday Bright and early we were at Quest for another blood draw.  I am a frequent flier too now in Center Line, MI.  Desiree was wonderful, very re-assuring and calming.  She is the only Tech in that office and it runs without a hitch.  She is very conscientious, efficient and caring.  Driving home on Friday morning I received another call my platelets are down to again now to 21,000 and hemoglobin is down to 7.2…  Okay I will be going for a transfusion next week because my hemoglobin is not going to rebound as fast as my platelets will.  They already faxed an order to the lab I go to on Saturday morning.  I was able to get a 10:15ish am appointment. Perfect timing… 

We had Megs 21^st Birthday celebration at one of our favorite restaurants’ the Martini Bar on Elmwood Avenue.  There were 9 of us… My mom, me, Lynn, my 2 sisters,  Gail’s husband and close family friend Molly.  The restaurant knew it was Megs 21^st Birthday celebration so they asked her what she wanted to drink and promptly asked for her ID… She was VERY Happy to oblige…  <laughing>.  She tried 2 different Martini’s before she found one that tasted good…  Dinner was so much fun, lots of talking, laughing, and reminiscing…  After dinner Gail, Molly and Clark took Megs out partying…   Megs did really well, not to hung over the next day…  It was a perfect ending to a great week of vacation, minus the frequent visits to the lab…  Over all a Great Week…  Love those days, weeks… 

Peritoneal Cancer Diagnosis Journey Phase XVI

Phase XVI

On my next doctor visit we brought a couple of cases of my new favorite supplemental drink to the Infusion Clinic for people to try.  We brought the two flavors that I love.  The month of May has 5 Tuesday’s in it so this month I will get Chemotherapy twice.  Oh boy… 

My appointment is on May 1^st normal time so Lynn and I bring all our stuff for the day plus the two cases of Orgain… Lots to carry…  My numbers CA were disappointing to say the least.  Damn CA-125…  I try to not get discouraged by the numbers it is hard…  I feel good and that is what I gauge my health on, not the numbers.  Well I try real hard to focus on that.  Today CA-125 increased now up to 3499…  I will be focusing real hard on how I feel and not the numbers.  Yes, I will admit that increase caught me off guard.  It is back to where it was back in August 2011.  Sigh this is probably why I have not written anything on my blog in 4 weeks.  Simply letting my emotions, thoughts run their course and allow me to stay focused on treatments and life.  Today we decided to switch the Cisplatin and go with Carboplatin, yes, no one is comfortable right now with the latest number.  Seems when we switch I experience a nice decrease.  I am good with that…  We are doing the Avastin, Doxil, and Carboplatin…  We discussed why I was taken off Carbo to begin with.  I said because my white and red counts take a beating on Carbo, so we thought cisplatin should be as effective and it would give my blood a rest.  If my next visit does not show an improvement in my CA numbers we will move to different drugs in my doctors bag of tricks.  I am good with that and feel good about the treatments so off we go.  The up side with this infusion is its quicker then having cisplatin.  So we get some of our afternoon back that is cool…  We bought lunch preparing for the longer treatment, which is okay because we took it home and had lunch there.  I took a good long nap…   It is tiring sitting around getting infused…

The next couple of days are, yep you guessed it my Steroid high days so I worked…  That really helps me, keeping busy and not focusing on those damn CA-125 numbers.  This go around the treatment tuckered me out; I slept a good part of Friday and Saturday.  That is a good thing as I did get a Neulasta® shot on Wednesday as Carboplatin always knocks the hell out of my blood counts.  So we decided to help bolster the white cell count with the Neulasta®.  That makes you achy…  I try and time that shot with my down day on Friday and Saturday so I rest a lot.  When I woke on Friday, I was a bit achy so I took an ibuprofen, which helped take the edge off…  Saturday too same thing, took an ibuprofen every 4-6 hours and it got me through the day, that and eating every 3 hours…  Keeps my stomach busy so I don’t have to take any other medication for sickness…  That is really good in my book; I am fortunate we have this down to a science… Eating every 3 hours and Miralax every day…  Sunday I am on my upswing and starting to putter around again…  Next weekend will be busy and I want to well rested and ready to go…  It is that time of year…

On Saturday one of our oldest nephews graduated from UB with a dual BS in Chemical and Bio Engineering degrees…  That was sooo much fun to see Mike graduate after all that hard work…  Right after his graduation one of our younger nephews made his 1^st communion so we drove to St. Thomas in South Buffalo for that.  The timing worked out very well we made it to both and I took lots of pictures… SO much fun.  After the 1^st communion we are a celebration for Mike’s graduation at a local bar and restaurant we all go too…  Took lots of pictures there too…  On Sunday we had the 1^st communion party and Mothers day… 

On Sunday morning I woke up at like 7 am…  Really, I am thinking, now what do I do, everyone else is sleeping.  So I went downstairs and downloaded all the pictures.  I put Mikes graduation and Andys first communion into slide shows and attached music to them.  They came out great, next I have to figure out how to copy them to DVD’s…  When Megs woke she bounded downstairs and came into the Florida room where Lynn and I were having coffee.  She said I know you said not to get you anything because of the coffee maker I bought, but when I saw this I had to get it for you…  The mother’s day card was so cute.  It was a little girls’ toothless smile…  Inside she wrote a note that still brings tears to my eyes…  “You are the strongest woman I know!  You are an inspiration to so many people!  When I grow up I hope I’m half the woman you are!...”  Yeah I am tearing after I read that <smile>.  With tissue in hand I opened the box she gave me.  Inside is a charm with a ribbon of hope, inscribed on the charm is the word “Believe” on the back “Love You”.  Oh yeah by then I’m sobbing, needing the whole box of tissues <laughing>, not just tears of joy, but sobs of joy…  Megs recorded me opening the gift and she recorded like 15 seconds of it, cuz she was crying too and we laughed that she didn’t want anyone to see she was crying with the camera shaking so she stopped recording it…  It was so thought full, there is a picture of it on my blog…  I wear it every day, except if I am doing yard work of course or something like that…  Whenever I look down and see “Believe” I am reminded how precious each day is and that I am here doing my thing, I am very Lucky and it is all good!!!

The 1^st communion party was a lot of fun…  Andy was sooo cute, he read each card, we forgot to print our names on the card and not write them out, oh well, we will have to remember that next time we give a card to him… 

On Tuesday I received a call from the infusion clinic… Yes, that generally means something is out of wack from my 2 week blood draw.  My red cells are not doing so well.  My hemoglobin is down to 7.4 (should be 12-15) and my platelets are 27,000 (should be 90,000-150,000).  Laurie asked if I am tired and bruising easily…  I said, I feel okay, now that she mentioned it maybe I am a bit tired.  <smile>  She said the doctor is recommending I get a transfusion, which I agree.  My hemoglobin has been 7.4 before but my platelets have not been that low before.  So that concerns me.  I planned on taking Thursday and Friday off, so I arranged to have the blood transfusion on Friday.  Since I planned on having a day off that day I will bring only fun things to read and no work…  I opted for the 7:30 am appointment… This way I am home by 2-3 ish… Still have some of afternoons and I have a baby shower to go to in the early evening…  Lynn is having some people over for dinner so I can make sure the house is ready for guests before I leave… 

On Friday I arrive at 7:30 am with coffee, breakfast and snacks in hand.  I will get lunch there, which has been good in the past…  This will be my I think 6 blood transfusion since this adventure began.  The nurses know me there now too, not that they are happy to see me back…  It is what it is…  The blood transfusion goes just fine and I feel better and have nice color in my cheeks...  The last two blood transfusions I have felt better after the 1^st pint.  After the 2^nd one was done the nurse disconnected me and said you may go when you are ready.  You are a frequent flier here and haven’t had any problems in the past…  I have become a frequent flier at a number of medical establishments…  My lab, I am there every 2 weeks normally, right now I have to go more often with my doctor watching my platelet count closely.  When I am at the lab I sometime get the newbie’s doing to blood draws.  I don’t mind, I have good veins, I have my mediport to thank for that…  The one newbie attempted a vein that really shows itself in my left arm…  The techs I always get generally don’t go to that one; they draw from the one next to it that you can feel, not see.  Well the newbie got a lesson, she tapped into the vein that showed itself nicely then the needle fell out of the vein.  I like to say she stabbed it with the needle and it went Ahhhhhh and shriveled up <Grin>… She was so apologetic…  I told her it was okay, it’s not the 1^st and it won’t be the last…  The next newbie I got, she was eyeing that same vein.  I said I wouldn’t if I were you, that one will shrivel up when you stab it…  Everyone here always goes to the vein next to that one you can't see, but you definitely can feel…   She looked at me funny, and the tech that was working with her say, she is a frequent flier here; to me she said you are here what every two weeks.  I said, yes I am…  < laughing>…  This newbie took my advice and avoided the vein that teases them…  Smart lady… plus when she drew the blood I didn’t even feel the needle, very good job… 

 Well I got another call from my doctors’ office; my platelets are down to 26,000…  Got the in case of an emergency to directly to the emergency room, yes I will… Okay still no running with scissors or playing rugbie…  I have to go for more blood work on Monday…  And guess what?  No Call on Tuesday… Yippee my platelets are finally on the up swing… Go bone marrow, pump out those HEALTHY red cells…   Doing the happy blood dance…  Gotta keep it pumping, don’t want to be delayed for my next visit… Have blood work on Tuedsay May 29^th for my doctors’ appointment on May 30^th…  Gots lots of ground to make up here… I am feeling really good and very alive…   

Peritoneal Cancer Journey Phase XV

St. Patty’s day weekend was so much fun with family celebrating Christine’s 60^th birthday…  The Food was wonderful as always… Can’t go wrong with Curly’s, such an awesome restaurant…  The service was good, drink tasty, had a couple of glasses of wine (Chardonnay) one of my favorites…  Yes I can be a bit whiny <smile>...  I had salmon so I thought white wine would be good…  Everyone seemed really to enjoy themselves.  Christine had a ball…  Our family filled fun weekend started on Friday, meeting the Cape Cod Tranchell’s at the Anchor Bar for wings, Megs said don’t go to the Anchor Bar, go to Duffy’s, they have better wings.  After dinner it was agreed that the Anchor Bar was not what the Cape Cod Tranchell’s remembered.  It has gone through a few owners since it’s original chicken wing creation…  Next time it will be Duffy’s…  On Saturday we had the Party…  It was so much fun…  Can you believe I forgot my camera!  Those that know me must be shocked...  I didn’t think of it until we got to Curly’s and Jesse said, “I have my camera”… I looked at Lynn laughing and said I didn’t even think of our camera…  Better not to have forgotten anything else for the Party.  After the party the cousins all met up at the Hamburg Tranchell’s for a get together.  Lynn text Megs about it so, she could join them after work, all the younger generation had a camp fire.  Which she did and that worked out great because she gave Jesse a ride back to our house.  Lynn and I hung out with the baby boys and their dad…  We were having everyone at our house Sunday for breakfast so we could see everyone before they ventured back home to The Cape and New Jersey.  So we stayed home to prepare the breakfast casseroles for tomorrows breakfast.  The baby boys woke about 5-6 am for their 1^st feeding.  That worked Perfect as the breakfast casseroles needed to cook for an hour each, so we got to spend quality one on one time hang out with the baby boys all by ourselves from 6 to 8…  They were so talk-a-tive…  They did take a quick nap.  After about an hour I heard cooing, I walked in the living room to see who was waking up and there was Joe pulling on Jason’s hand and PJ’s as if to say HEY WAKE UP… I’m awake…  It was so cute…  I had to work the get Joe to let go of his brother so he could sleep…  I brought Joe into the kitchen with me to finish getting ready for breakfast while we chit chatted…  He is such a flirt with his big eyes and easy smile…  Breakfast was all ready by 8am…  When everyone arrived it was time to dig in…  The last of the guests left about 11:30ish and we cleaned up…  It was really so much fun and tiresome.  We crashed I think at like 8:30pm and I slept like a log.  I know I slept soundly as Monday I was full of energy again. 

With all the drug shortages and stress that goes with it when it is your drug in short supply, compounded with what is definitely a strong stance on women’s healthcare by some, I have been thinking a lot about our healthcare system and how it operates.  It is obviously based on a capitalist market.   Profit driven and such…  There is nothing wrong with making money.  There is something wrong with making a profit at the expense of a person.  There are some things that maybe should just not be so profit driven.  Some things obviously need government intervention (regulations) for the overall good of society.  Hence the division of opinions on what that means... 

Well in my searching to find the ingredients between Doxil and Lipodox I did find a table that showed a comparison of the two.  It is from the American Society of Health System Pharmacists (ashp.org).  This is a member organization representing Pharmacists that work for Hospitals and Health-care organization.  So I was happy to find this information.  The link to the table is under a separate page on my blog labeled “Table Comparing Active and Inactive ingredients of Doxil and Lipodox”.  I don’t see any difference in the drugs.  None…   I did notice the other day that the FDA has updated the Doxil shortage with the company handling the importing of Lipodox.  It should be covered by insurance companies, if it isn’t that is probably because the FDA won’t say it is a comparable drug.  I hope and pray that isn’t the case.

It is April 3rd and time for my next Doctor appointment and Chemotherapy appointment.  My appointment is at 8:00 am…  normal time, yippee.  My CAT scan is the same, no evidence of active disease.  I am stable, phew, yes big relief and we thought that so…  That is good news, I get nervous before my appointments after a test…  That is to be expected…  After all these months this feels normal to me.  I go with it…  My CA-125 number went up to 2673 from 2342.  Sigh it is considered stable.  Weird huh, it goes up 331 points and we don’t blink, simply sigh…  <chuckling>  I mentioned I had the stomach flu that lasted 24 hours a couple of weeks a go, don’t know if that could have affected my number or not.  My doctor just looked at me and proceed to discuss that he is very comfortable with the regimen I am on, that sometimes patients want to change up the drugs in an attempt to get the numbers to change.  We discussed what drug regimens I have been on and he missed that I have only received 4 Avastin infusions; today will be my 5^th infusion of it.  When I mentioned that and he verified it in the chart, he seemed to relax, if that is the right word, or not concerned maybe is better, <smile>.  I said, I am comfortable staying with the regimen for the recommended treatments, which I think is 6 or 8.  That I was uncomfortable switching drugs for the sake of switching drugs in hopes of a drop without knowing that we should switch.  He agreed that made sense switching at this time maybe premature.  That I certainly can experience a significant drop completing this cycle.  So Cisplatin, Doxil, and Avastin it is.  The rest of my blood work looks good...  So off to the infusion clinic we go with our coffees in hand and snack for anyone to part-take in and conversations… 

Oh!!!  I have to mention that I finally tried a supplement drink that my daughter Megs and her friend Meghan would drink as a meal replacement thing when running late for class in the morning when she was at Brockport.  It is call Orgain.  A doctor came up with it after going through chemotherapy himself and was appalled at the taste of the supplemental drinks on the market.  So he worked to come up with a drink that tastes good, low in sugar, high in all the stuff you need it to be high in (like protein, vitamins, antioxidants, etc).  It’s Organic, gluten free…  I tried the Creamy Chocolate Fudge, gotta love the name, how could it not taste good!…  It tastes GREAT and I CAN DRINK ALL 11 oz and ready…  I like it…  No kidding…  I also like the Iced Café Moca…  Yum.  Even my “Oh my I don’t know what I can eat days”, which Lynn just loves, yes dinner decisions are so much fun…  It’s where I am eating something every 2 to 3 hours to keep my stomach busy, I can drink this, enjoy this and I feel better.  I noticed my energy level is better and I feel better quicker…  I will be the first to admit I am very luck, I bounce back from Chemotherapy; this stuff helps me get there better…  Of the other drinks I can choke down Strawberry Boost and most times I cannot finish the 8 oz bottle.  If I don’t chug it all down the 1^st few gulps then I have a hard time drinking it after that, usually I throw it out, don’t want to start a gag thing...  Know what I mean…  Don’t get me wrong Boost helped.  With Orgain I like it and I finish it, it does not taste vitaminie.  It is well worth the extra pennies more it costs to buy it and gratefully we can buy it…  If I were to cost out what I don’t finish with boost and what I do finish with Orgain, I think it costs the same… 

I have been telling everyone I know on chemo or having trouble eating for whatever challenge they have about this drink…   Here is the link to it if anyone would like to check it out…

http://www.drinkorgain.com/

In the WNY area Wegman’s has the most reasonable price I have found…  Though with me telling everyone about it, it seems to be flying off the shelves <laughing>…  My daughter Megs went to Brockport to visit friends and bought me a case of the Creamy Chocolate Fudge, because we have been having a hard time finding it here, she said I should keep it to myself, alas that isn’t going to happen <smile>… Again with a name like Creamy Chocolate Fudge who could not love this drink…  <laughing>  I love chocolate, then again not many woman don’t…   A co-workers son is going through chemo too and his favorite flavor is the Ice Café Moca…  I am not a fan of vanilla, however if I add berries to it or a banana it would be marvelous…  Just have to drink it at home and not grab it out of the fridge and off I go…  Orgain does not have to refrigerated, but it is best chilled to drink…  So buying a case or two is fine as it will last just fine…  I throw 4 or 6 in the fridge and away I go...  Can you tell I love this drink…  <smile & twinkle & wink in the eyes>…

Compaison of Doxil to Lipodox active inactive ingredients

Peritoneal Cancer Diagnosis Journey Phase XIV

Phase XIV

Had my MUGA Scan appointment.  Uneventful which is always a good thing.  It took longer this go around as the Radiologist had 2 University Students so he was explaining everything to them.  The one student got to start the IV in me for the test.  He did a really good job, didn’t feel the needle stick.  It’s funny I don’t remember tests taking as long as they do.  So while the test was doing its thing I closed my eyes and pictured being on a golf course on a sunny day with a light warm breeze…  Next to the ocean… Of course my ball does not go into the ocean or any sand trap…  <Laughing>  Yeah, anyone that has golfed with me know that’s not true…  My drives were amazing and my short game flawless, it’s fun to dream <smiling>.  The radiologist touched my arm mid way through the test and asked if I was okay.  I said sure, I’m imaging I’m on a golf course, he smiled and said just checking you are okay…  So I went back to my awesome golf game… 

When the test was done off I went with my day, huh after my imaginary golf game, maybe it is time for a warm vacation somewhere, maybe exotic…  Have to get with Lynn and see what comes to mind… 

I was on facebook “Teal Warriors” the other day and one of them posted this USA Today article addressing the Doxil shortage:

http://yourlife.usatoday.com/health/story/2012-02-20/New-source-found-for-cancer-drug-Doxil-in-short-supply/53181806/1

The FDA has approved the temporary import of Lipodox from a drug manufacturer in India that the FDA has inspected their plant.  I am so thrilled that the FDA has taken such a strong stance against this shortage and the pharmaceutical industry.  I hope it is a message of sorts to them…  Get their act together…  Did you know that Janssen has an extended patent on Doxil…?  So they are the only company that can manufacture this drug in the USA.  With that they have let this happen with full knowledge of the ramifications’ (no one else in the US can help).  There is no way they could not have known that if their 3^rd party manufacturer didn’t get the problems fixed that this drug would disappear from the US market.  A drug that is critical to recurrent ovarian cancer patients…  Because of legislation that has been approved on president Obama’s watch the FDA now requires at least 6 months notice from drug companies if they suspect a potential shortage.  It really is sad that the government must tell business (Drug companies) to act responsibly in the healthcare market.  Isn’t there some kind of inherent obligations or maybe ethical is a better word, to take care in ensuring needed items are safe and available.  The FDA can and has the authority to find comparable drugs to fill the pharmaceuticals monopoly on a drug and authorize its temporary import of it.  

You can read the latest letter from Jansen dated 2/23/12

http://www.doxil.com/

Okay, I am really not a fan at all of Janssen…  And quickly becoming very upset with Johnson and Johnson, Janssen’s parent company.  Janssen continues to say “we at Janssen are committed to returning Doxil to the market for patients needing Doxil” but they cannot say when that maybe, except LATE 2012 at the EARLIEST and my other favorite is “lipodox is not an equivalent drug to Doxil”.  Mind you the FDA has said in a FAQ:

Q2.            Is Lipodox the same as Doxil, or a generic of Doxil?

A2.            Lipodox is a drug with the same active ingredient, dosage, strength, and route of administration as the FDA-approved drug Doxil, and Lipodox is manufactured in a facility that has been inspected by FDA and found to be in compliance with current good manufacturing practices. Lipodox has not been approved by FDA, and therefore, FDA cannot consider it a “generic” of Doxil. The agency has exercised enforcement discretion for the importation of Lipodox during this critical shortage of Doxil.  Here is the address to the FDA question and answers on the Lipodox.   

www.fda.gov/downloads/Drugs/DrugSafety/DrugShortages/UCM295225.pdf

I did find the Dear Healthcare Professional letter mentioned above and it is from the distributor of Lipodox. 

http://www.caraco.com/Lipodox/default.aspx

I find it ironic that Janssen and the FDA keep pounding the drum that this is not a generic version of Doxil.  The distributor says the following in the above letter “Lipodox 50TM 50mg/25ms (2mg/mL) single use vials contain the same active ingredients, doxorubicin hydrocloride, in the same concentration as Doxil® doxorubicin HCL Liposome injections (janssen Products, LP: 2mg/mL-20mg/10mL and 50mg/25mL) marketed in the United States”.  Sigh… Who do you believe, the drug manufacturer that allowed Doxil to leave the market for a year or more holding and extended patent to not allow anyone else to enter the market?  Or a company that is willing to step in with what appears to be a comparable product?  If it has the same active ingredient in the same strength how is that not comparable?  So, what else could be different?  What other active and inactive ingredients separate them?  That would be an interesting comparison…  huh maybe my next research, reading the dreaded informational packet of both drugs of what makes up these two drugs… ZZZZZZZZZZZZ…  <laughingly>

My take is the FDA cannot call it a generic, and it has not been approved for the US market, why?  Because Janssen has an extended patent to be the only manufacturer in the US…  This is so self-serving and they (Janssen) are squarely responsible for this drug shortage that they saw coming.  They knew of the manufacturing difficulties of their 3^rd party manufacturing plant and were not aggressive enough to remedy fully knowing that no one else in the US makes it.  If they didn’t know of the problems, then that borders neglect from where I am sitting.  Which I’m feeling very neglected by the drug industry being right in the middle of this Doxil nightmare, as are thousands of patients in the US. 

I am definitely a lucky person and really am SO grateful to be receiving treatment and it has been a bit concerning each month wondering when my Doxil treatments will be gone…  My heartaches for the thousands of women experiencing recurrence and having to have more toxic drugs and deal with many more side affects.  With the news of Lipodox, it gives me, I think, a much welcome breath of relief that I can continue on the treatment regimen as my doctor feels is working and not be force off because a drug is not available…  I will have to ask my oncologist his thoughts on this drug (Lipodox). 

Below under My Blog List is one that really has a lot of great information on the Doxil and drug shortages.

Help Keep a Sister Alive

Guest Post on Drug Shortages- Very Moving!

I would encourage a read… 

Had my doctors’ appointment on 3/6.  Mixed report is how I would describe it…  My MUGA Scan is at 64%... WOO HOO basically no change.  My CA 125 # crept up to 2342.  Really…. Grrrrr  sigh.  All my other blood numbers are great.  Spot on…  Just this damn CA #.  Lots of thinking going on in the room…  I am to schedule another CAT scan to check what is going on inside.  I feel good, so I am thinking I am good…  We are continuing with the Cisplatin/Doxil/Avastin infusion.  My one blood result was not back yet so we are starting with Doxil…  I fell asleep, as my appointment was bright and early, 7am.  So after my pre-drugs off to dream land I went…  lol When I awoke the doxil was done and I had the Cisplatin going in.  When that was about done I asked about the Avastin.  Guess I slept through that one, < smile>… Good I’m thinking…  We are passing on the chest x-ray this month as I scheduled my CAT scan of chest, abdomen, and pelvis for 3/19… One of my blood work up days…  The up side is I will only have to get stuck just once and it will be via my mediport for both my blood work and CAT scan… 

My treatment is uneventful…  and the next couple of days I will feel good, before my crash day/sleep day-weekend.  Lately I have been doing good on Friday working from home most of the day and it seems Saturday I nap on and off.  Sunday I start puttering around.  This go around I seem to feel it a bit more, probably just the cumulative affect of being on Chemo for over a year now.  By the following weekend I am back doing my usual puttering…  That is so great and I am as I said very lucky…  A remission would be so very awesome, and I will get there only a matter of time… 

Over St. Patrick’s Day weekend we are having Lynn’s sister Christine’s 60^th Birthday Party at one of our favorite restaurants’ Curly’s in Lackawanna.  All of Lynn’s siblings will be there and nieces and nephews.  The only one missing is Will…  He will be there in spirit…  And most fun is Jesse and Kyle and the baby boys are staying overnight at our house, yippee, dancing around to the music in my head…  Hey that is better than voices…  Oh what fun the weekend will be…  The baby boys are so cute and have amazing personalities, can’t wait to see them…  We certainly can see why they are amazing, their parents are amazing young adults and wonderful parents…  It is so much fun to see…  

My Primary Peritoneal Cancer Diagnosis Journey Postings XIII -

Phase XIII

Well someone from Roswell Park called me back on February 1^st about the vaccine study.  I was very surprised; I thought they wouldn’t call before 4 weeks.  The person I talked to wrote down all my clinical information and the different treatment protocols we have tried so far.  It was funny, as I had to spell the chemo drugs I have been on to be sure she took down the right ones.  We talked about where I am in my treatment and she said she was passing my information on to the research team.  That I will hear from them in about 4 to 6 weeks.  They will have more questions for me and may request that I come in for blood work and tests.  Cool I am thinking…  This is very exciting to get through another screening process it seems.  Plus 4 to 6 weeks gives me plenty of time to talk with my Gyn oncologist about the study, get his take on it, and of course his recommended approach to it.  I see my doctor on February 7^th.  I have the study printed out to give to him if he doesn’t have it.  I would be very surprised if he doesn’t already have it as being a GYN oncologist and affiliated with Roswell.  Plus I am sure his office has received a number of calls about the study, as it is right in our back yard… 

My doctor’s appointment went well.  I was hoping for another 400-point drop.  Alas my number basically stayed the same.  It is now at 1700…  I’m thinking bummer… (Laughing)  I did get the talk again that the change in my number is not significant and therefore remained the same/stable, which is good.  I know stable is good, I can be a bit disappointed that it didn’t drop…  He agreed…  On a positive note, my blood counts are the best that they have been all year…    My last chest x-ray showed improvement too, my overall exam is good.  He asked if I was working out because I look like I am getting fit.  I said not working out, but puttering around the house, re-organizing things.  So I am generally always moving around which really helps me get feeling better.  I said we want to and been talking about walking a few times a week, but we have not started that yet…    He asked if we had a dog, we could walk ‘em and get exercise that way…  I said no, two cats who think they are dogs…  He said you can’t walk cats, I said you are right, they lay down when you put a collar and leash on them and they won’t get up, laughing…   I said I am really glad Megs isn’t here today because that would be another additions to the argument why we "need" a dog…  He laughed and said yes I guess we can’t say no to our children…  I said, nah it’s more like daddy’s can’t say no to their daughters…  We have been saying no to a dog for a few years know…  lol.

He asked how I tolerated the last round of chemotherapy; I looked at Lynn and said fine.  He asked about my neuropathy, I said generally the same.  I have some days I hardly notice it and others I am more careful because I notice it more.  He shook his head and asked for a Chemotherapy nurse.  They have ordered another MUGA Scan to check my heart because I have been on Doxil for 6 treatments to compare to the first one I had when I started Doxil.  My last MUGA scan came out at like 67%.  Wouldn’t it be a hoot if my next one was even higher! (go Cathy, go Cathy… doing a dance)  lol 

My treatment this go around will be the same; Cisplatin, Doxil, and Avastin…  long day again…  such is life…  :-)  I have my iPod, Kindle and food, Lynn and I are all set…

Before we were done we asked him what he thought of Roswell’s exciting announcement of a vaccine study that includes ovarian cancer.  He looked curious at me, probably trying to read what my question is.  He said he was surprised it is a phase I study.  That Roswell had a similar vaccine study about 8 years ago that didn’t really prove anything.  He mentioned when he was in residency at Roswell they were studying vaccines.  I must have said “Wow” out laud…  That caught his attention; he said I am not that old…  I laughed saying, that is not what I meant and I have more gray hair than you do…  What I meant by wow was that I didn’t hear anything about a “cancer” vaccine until this past year.  He said it fell under immunotherapy (or something like that, can’t remember the exact word he used).  Studying the immune system in relation to cancer was what I got out of the conversation anyway.  He said you could through your name in the mix.  Then the conversation went to; was I hoping that the vaccine would have an antidotal response and work for me.  I said Yes of course I am hoping for that :-)…  He asked me if I understood Phase I is to determine Toxicity levels for this treatment.  I understood that, and that chemotherapy cannot continue while receiving the vaccine.  He asked the Chemotherapy nurse that was with us what she heard from Roswell, and she simply replied they have there 20 for Phase I.  I said there is always Phase II so it would make sense for Roswell to keep gathering information.  Plus the news release and conference referenced a vaccine study that was done in PA with woman that had Primary Peritoneal Ovarian Cancer and is 7 years re-occurrence free.  My understanding is this study is based on that one; the difference is Roswell is making the vaccine with a projected cost savings of about 50%.  My GYN oncologist said he does not recommend his patients for Phase I studies because of the nature of phase I studies, he generally may recommend Phase II or Phase III.   He said if Phase II or Phase III comes out and says can receive the vaccine with standard treatment(s) he would be comfortable recommending it.  Studies that say vaccine alone, what happens if the vaccine does not work and the patient forgo any traditional treatments?  I said that is a real concern for us hence why we are talking with him and will not make any decision one way or the other without his recommendation.  Lynn feels that he wants his staff to stay in close contact with Roswell Park regarding this study so they have all the up to date information on it.  That is a good thing because the more information he gets on this study the better for me, my family and their other patients… 

Over the past few months I noticed my new favorite word seems to be “believe”.  I have seen it many places over the holidays and many things have had this word on it…  "Believe" is such a positive and powerful word…  It seems I can simply say believe and I feel better, more positive, stronger and it amazes me…  Huh maybe a tattoo is in order… lol  Nah…  I’ll just keep repeating it every chance I get…  :-)  That sounds better and less painful…

My Primary Peritoneal Cancer Diagnosis Journey Postings XII -

Phase XII

Wow, my twelfth posting, where does the time go <smiling>…  25 countries have viewed my blog now with over 1300 page views since October 19^th when I started to post my journey…  It really amazes me and at times over whelms me in a good way…  I was talking with my beautician who encouraged me to blog about my journey and the drug shortages.  She said you should try and post a map showing all the countries that view your blog.  So I did it!!!  At the bottom of my blog you can see a map of the different countries that have viewed my writings.  I was thrilled when 100 people viewed by blog, now over 1300 and 25 countries…  amazing, so very cool…  and so up lifting to me to think I maybe helping get the word out, maybe helping someone else in a challenging situation... 

Had my next Doctor visit on January 10^th.  My CA-125 is now 1650!!!  That is over a 400-point drop…  Happy New Year to ME!!!  Best drop in a year, finally moving in the right direction solidly…  My white count dropped and is down to 2800…  Weird, as usually with Carboplatin it is your red cells that take a beating and my red count was good.  My baby cells were about 1000, with that count low and my white count down to 2800 my doctor is concerned.  He consulted with one of my Chemotherapy nurses and they decided with us that I could have this round of chemotherapy as long as I agreed to a Neulasta shot.  I said I had a couple of those shots when I was on Alimta earlier in 2011.  He asked how I did on the shot, I shrugged my shoulders and said I did fine, not bad at all.  The side effects kicked in at the same time it is my sleeping day(s) from my chemo treatment, and a little ibuprofen definitely helped.  He just looked at me and I smiled.  He sort of shook his head saying you make things look easy when I know they are not.   Really I am a bit achy from them; it is not any worse than the achiness from the flu.  A couple of ibuprofen, crawl under the blanks and sleep, in a day or so all better…  <Laughing out load>  Okay maybe not that easy, though it seems walking, moving and puttering around really helps me through the achiness, by Sunday I’m feeling much more like myself.  Plus (Big Plus) with the shot my chemotherapy will not be delayed…  That is big in my book especially with a 400-point drop in my numbers.  I want to keep up the momentum.  Wouldn’t you?  I’m thinking, Oh YEA!!!

I asked what my treatment was going to be this go around?  With the Doxil now depleted I was sure I would be getting something else, no doubt in my mind.  My doctor looked strange at me and asked why.  I said I have been getting Cisplatin, Doxil, and Avastin (I misspoke, I actually was on Carboplatin, Doxil and Avastin).  He sat back down contemplating Cisplatin…  He said I actual like that combo for you; I obviously was making a face because he asked what was wrong.  I said I just don’t like the name Cisplatin <laughing>.   He said why, so I emphased Cis-platin.  The chemo infusion nurse that was with us smiled, she understood why.  He just looked at me a bit concerned and I said I will get over it, it is just me <Smiling>…  So today’s treatment will be Cisplatin, Doxil, and Avastin…  We shall see what this combo does.  I’m thinking knock the you know what out of my CA-125.  The phrase “Be careful what you ask for” is coming to my mind, even subconsciously…

My appointment was a little later today so Lynn and I were able to stop and grab coffee and something to eat for later during my treatment.  That is nice having coffee right away.  We picked out our seats for today’s adventure and settled in.  The ladies that were already there were laughing, as we generally seem to take the same seats quite often.  Today though we seem to try different seats than usual.  The nurses commented, now how are we going to remember where everyone is...  It is going to be longer infusion today because of the Cisplatin.  They have to give you more IV fluids as Cisplatin can attack your kidneys.  It worked out well today as I have my blue insulated cup filled with ice water to drink during chemo.  I shall be trying to double my fluid intake over the next few days to keep my kidneys flushed out and not allow that chemo to linger there…  Yes, that means I will be close to a bathroom… 

The infusion went without a hitch today, which is wonderful…  Went home and napped for a bit…  When I woke about 4:30ish it was getting dusk and our home was dark and very quiet, not a creature was stirring.  I sat up and looked out the front window as I wondered if I was by myself…  I wasn’t, Lynn was upstairs in her office and Megs was in her bedroom studying…  Lynn came down stairs and said you are awake.  I said yes, and wondered if I was alone, till I noticed the cars…  That was a weird feeling waking up at dusk from a sound sleep, you wonder what day it is and what you missed <laughing>…

I worked the next two days after chemotherapy and took Friday off as generally the 3^rd day is my sleep on and off day…  With treatment on Tuesday, my lay around and putter day falls on Friday then Saturday I am moving around more…  When my treatments are on Wednesday my sleep and slow moving days fall on the weekend so I miss less work.  Having them on Tuesday is fine; the Doctors office does not seem to be so crazy…  So it all works out just fine…

The rest of the month is uneventful, busy with life…  That is a wonderful thing and I really enjoy all the challenges that come with it.  Work is crazy; it is that time of year, “end of year”…  I keep saying this too shall pass…  Been saying that for a number of years that and this is an unusual week, and then it got pushed to month. Now I think I am up to decade…  lol

Well on January 24^th 2012 Roswell Park Cancer Institute (right in my back yard) announce a clinical trial for a vaccine they developed and received FDA approval to move to Phase I of trial for a whole host of cancers.  They say “The new NY-ESO-1 dendritic cell vaccine is expected to show great promise in patients with bladder, brain, breast, esophageal, gastrointestinal, hepatocellular, kidney, lung, melanoma, ovarian, prostate, sarcoma and uterine tumors”…  They are looking for up to 20 patients to participate in Phase I.  How exciting is that.  In the news conference the also mentioned Primary Peritoneal Cancer and patients that have lingering disease…  I’m thinking hey that is me…

http://www.roswellpark.org/media/news/roswell-park-launches-landmark-immunotherapy-vaccine-trial

  So yes I called the phone number and threw my name into the mix.  My next doctor’s appointment on February 7^th Lynn and I will talk with my GYN Oncologist and get what he thinks about this study…  This is so exciting and it is right in my back yard. 

On January 30^th I received a call back from Roswell, they left a message for me to call back and ask for a person, so I did on February 1^st.  They took down my clinical information and talked about where I am in my treatment.  Said I will get a call back in about 4 weeks.  That works great, I’m thinking as we can talk with my Doctor and see what he knows of this trial and thinks…  and what he thinks about it with my situation.  My mom is so excited that I called and have received a call back.  She energizes me about it…  I don’t know if I have the protein yet that they are looking for, my Oncologist may…  Wouldn’t it be awesome if I do qualify, I get into the study and my insurance helps pay for it…  I know a girl can dream and wish can’t she… ?  Oh yea, I can…  ;-)