January lunch at Good's

Monday mom and I headed to Good's in Kewanee for lunch with Carol, Peggy, Rosemary, Steve, Laurie and Virgil. It was a good day to travel and the waitstaff there at the Good's restaurant is getting pretty used to seeing the group each month.

Mom had (or tried) a port flush Tuesday morning. The nurses didn't have much success in getting it to work as there is some fiberous material still clogging the area. So they put some chemicals in there to break it up or keep it from getting worse. Not a big concern right now as she isn't in any chemo treatment but eventually they will have to clear it out somehow.

We are leaving for AZ next Thursday, LATE, flying out on Allegiant from the Moline airport. The snow forecast looks ok so hopefully the weather will be nice and clear. Looking forward to some warmer weather!

Arizona bound

Mom and I are shedding our winter gear and going to take a trip to Arizona to stay with Aunt Ruth and Uncle Bernie for a week at the end of the month. Mom has been wanting to go and visit them for a long time - so, since she is taking a break from chemo, now is the time!

My dad's sister, Cheryl, and her husband Paul live outside of Phoenix, and my cousins DeAnna and Darcy live around that area as well, so we are going to try and make a date and time to meet up with them. It will be nice to see them again.

We are flying out on January 26 and returning on February 2 on Allegiant, which has a direct flight from Moline to the Phoenix/Mesa airport.

Happy Holidays

Mom had her port flushed last week at Trinity - or rather they tried to clear it out but there was a bunch of fibrous material in there and so the nurses weren't able to fully access it. It's not a big concern but they will need to get it cleared up eventually if Dr. Porubcin schedules mom for chemo in a few months. For now it's ok. She has another port flush scheduled for January 17, so maybe the nurses will be able to clear it up then.

We had a great Christmas weekend - mom stayed over and got her fill of grandsons and pets. Tom made home made lasagna for Christmas Eve dinner and we also went over to Tim and Lisa's (Tom's brother) to exchange gifts. Mom is starting to think about making a trip to Arizona to visit Aunt Ruth and Uncle Bernie for a couple of days and then also visit Aunt Cheryl and Uncle Paul (Dad's sister and brother in law) in Peoria, AZ. There's a couple of weeks between the port flush on Jan. 17 and then blood work in February where she can travel.

The latest Doxil update is that the manufacturer, Ben Venue Lab, is still working on "equipment issues" and won't start producing more Doxil until next year, so the closest available date will be November or December of 2012 before it will hit market. If anything came out of the Hearings last week, I guess that the FDA has a few more rules to better manage the shortages when they occur. As most of the problems are manufacturing issues, along with drug costs, the FDA must feel that they must put some sort of rules in place to get a heads up on when a drug shortage is coming down the road. I don't understand how this is going to improve things... or get more Doxil manufactured quickly, but they have to start somewhere.

The Ovarian Cancer National Alliance has a list of good web sites to keep tabs on the drug shortage, along with connections to write your congress/senate person.

Senate HELP Committee Hearings on Drug Shortage

Yesterday I was able to watch some of a hearing online that the Senate Health, Education, Labor and Pensions (HELP) Committee held about the drug shortages. It was titled “Prescription Drug Shortages: Examining a Public Health Concern and Potential Solution.”

A couple of points that I got out of the portion that I listened to: 1) there is a drug shortage problem; 2) the FDA has been trying to address drug shortage problem(s) for many years; 3) they are going to continue to address the shortages and communicate with “stakeholders” to “mitigate” the chance of drug shortages in the future.

The above does not make me feel better about the situation and I felt like everyone was talking in circles. I downloaded all of the transcript documents which I am going to read this weekend and I hope that I will read about something actionable that the committee will do other than give the FDA a bunch of mandates.

I had the great opportunity to meet the President of the Illinois Medical Society, Dr. Wayne Polek, at my Rotary meeting on Tuesday. He addressed the club and talked about the Healthcare act in general, but that gave me an open door to ask about the drug shortage and tell him that cancer patients are not getting crucial treatments. He said that the drug shortage problem is very complex, and related to profitability, and the discussion was more than we had time for so I agreed to send him an email and we would correspond. I am interested in knowing what doctors are trying to do about this other than just tell their patients “There is no more medicine available.” Not only is that not very comforting to a cancer patient, it’s downright scary.

There should be more than one manufacturer that has the ability to make Doxil, so if that manufacturer isn’t keeping up with their quality control, then another manufacturer could step in and take over (and take the profits).

So yesterday, the Health and Human Services Department released a statement (as a part of the Senate hearing process I do not know) about President Obama’s Executive Order, and the FDA issuing a rule that will require manufacturers to report interruptions in production of critical drugs. Obama had already issued an executive order in October, so I guess they are just reiterating what they want to do to prevent future shortages. I honestly say that I don’t know if that will help or not, since the FDA hasn’t been able to keep an eye on the drug shortage ball in the last few years anyway.

Drug shortages and doxil ...

It's nice that mom is on a "chemo break" at least for the holidays, albeit that her CA125 is creeping up slowly on the scale. I can say with some certainty that Dr. Porubcin will be recommending chemo treatments in the future (after January), AND he already stated that he would prefer to put mom back on Doxil. But, there is a drug shortage and no more Doxil.

The Baltimore Sun had a good perspective on the drug shortage, however I think free market solution will address part of the issue. http://bsun.md/rs5CtD I'm not an expert yet, but I have to think that drug manufacturing is going to have to go through a larger overhaul than merely producing more Doxil.

Why hasn't another manufacturer stepped up to fill the demand? How far do people have to go with their demands? There is no doubt a demand... and those with an extreme need (like cancer patients) are depending on mass manufactured drugs with their lives... and manufacturers who throw in the towel because they aren't getting enough money..?.. and they (doctors, patients, lobbyists whomever) are expecting legislation to change this? I don't get it, and I don't like the answer "There is no more Doxil available." Cancer patients deserve more than that.

Doctor appointment

Mom's doctor appointment with Dr. Porubcin went as expected for the most part. Her CA125 crept up into the 40's, not a huge red flag, but he is thinking about the possibility of a chemo treatment in the future. The Doxil is still off the market, which is unfortunate because it worked when mom was having the treatments done. She is not having any other symptoms, so he's not going to look into another chemo drug at the moment. He will re-evaluate at the next appointment in February. He said she could go on one dose of Lovenox a day as long as it worked out in the prescription plan. The dosage will still be the same amount, but once a day will mean that there will be one less "stick" she'll have to deal with.

She's up to 107 pounds, which is great! I think she has more energy with more meat on her bones. She goes on walks twice a day and was almost in the clear to go to Jazzercise again, but Dr. Porubcin didn't want her to go quite that far just yet.

The float with Maxine

We went out to the Geneseo Victorian Walk last night and had some soup at First United Methodist and then went downtown to see the sights. There was a nice lighted parade this year. On one of the floats there was a rendition of the Hallmark card character, Maxine (www.maxine.com) and the sign said something about Have a Crappy Christmas - which was funny. More funny is the fact that one of mom's friends calls her "Maxine" because of the funny (and sometimes crabby) comments she makes from time to time.

Lunch at Good's

Mom and I took a road trip on Friday to have lunch at Good's with Aunt Carol, Aunt Rosemary and Uncle Steve. We all had a nice lunch and of course made room for pie afterwards. We also said a special prayer for Denny - Aunt Ruth had called and said that he was in the hospital because of some symptoms relating to his eye sight and head aches. Thankfully a stroke was ruled out but there are still tests to be done and mom said they were going to do a spinal fluid analysis that will hopefully give Denny and Peggy more insight into what is going on.

Mom has been feeling good the last couple of weeks, and she's looking forward to the holidays. We're going to go to a Christmas Open House next weekend at the Old Mill in Atkinson, Thanksgiving will be at my brother and sister-in-law's house in Port Byron along the Mississippi, and then the Geneseo Victorian Walk is on December 10. This year is the 25th Anniversary of the event, and it is also on Scotty's 22nd birthday. Mom is also thinking about a trip to Arizona in late February.

She has blood work done the week after next and then a doctor's appointment the first week of December. If she gets a good report then hopefully that will give her some time for the next few months to take some trips and not have to deal with chemo side effects. In hindsight maybe the drug shortage was a good thing in disguise. She has started on her new prescription plan with Blue Cross Blue Shield and it seems that it will be better than originally anticipated. She has a good value added option that will cover her Lovenox and reduce the effect of the donut hole. For once, it's nice to have some good news in her corner, but she is worried about Denny... so maybe everyone can send some cards his way and say some prayers. Prayers do work!