Tuesday, December 27, 2011
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.
Friday, December 16, 2011
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.
Monday, December 12, 2011
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.
Sunday, December 11, 2011
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|
Friday, November 11, 2011
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!
Thursday, October 13, 2011
The National Ovarian Cancer Alliance developed an app for smart phones and iPad, etc that allows women to keep track of daily occurrences, and if there starts to be any consistency in certain symptoms, such as bloating, urination frequency... then you can keep track of those in a diary format and take a look overall at what your body is telling you. Until there is a reliable screening method, keeping track of symptoms is the next best thing. The CA125 count is used as an ovarian cancer marker, but as I have heard Dr. Porubcin say many times, you can't rely on that number or use a course of treatment based on that number.
Taking charge of your health is the best thing you can do for yourself!
Tuesday, October 11, 2011
Her last CA125 count was in the 300's, so hopefully this next one will be lower. They should have the number in a couple of days. Dr. Porubcin reminded that he doesn't necessarily treat Ovarian Cancer by the number alone... so even if the number does go up, he may not start another treatment unless there are other symptoms that should surface (such as ascites/fluid buildup in abdomen).
So I guess mom is in a wait-and-see-what-happens mode. That's about all I got out of the conversation. The nice thing is that mom should have a nice break from treatments so that will give her some time to do some things without thinking about working around chemo sessions.
Tuesday, October 4, 2011
Dr. Porubcin still wants to see mom next week for her appointment on Monday. At that time he will suggest another possible course of action or treatment.
It's unfortunate because the Doxil was working and mom was on a good pace with the drug - finally - and having another treatment ON SCHEDULE would have been a good thing. Hopefully this won't be too large of a hiccup in her process, however I can't help but feel unnerved as this sounds like the shortage is due to some SNAFU of a third-party manufacturer. I've heard it described as "production delays" but that still doesn't answer the question. Why?
In a Chicago Tribune article, they noted that Johnson & Johnson's "specialty manufacturer" of the drug was moving out of the contract manufacturing business, which could cause shortages of the drug. This was reported in July. But the fact remains that if they saw a shortage coming down the road, then they should have found another "specialty manufacturer" to take care of this so the transition would be smooth. Not too much to ask. Of course I am not experienced at running a billion dollar company but one would think that there should be some processes in place if they are relying on other manufacturers.
So is Johnson and Johnson going to get in any trouble for this - for inconveniencing thousands of cancer patients? Depends on how bad some situations are I guess.
Thursday, September 15, 2011
The Good's Wine Cellar restaurant was especially busy for a Thursday. We were able to order pretty quickly after going through everyone's dietary restrictions...no seeds, dairy, spicy, etc. When the waitress got around to Peggy she just said "I'll eat anything you put in front of me." Of course we had dessert and mom ordered the banana creme pie that was a mile high. Mom got a lot of nice gifts (of which I left mine on the dining room table and remembered halfway to Geneseo): an embroidered sweatshirt, a bangle bracelet from the triplets, a special sister statute and a really nice flower arrangement.
The funny topic at the table was the popular video-of-the-moment. They all knew about it from somewhere - the news maybe? - and it was worth a few chuckles. The video is of a couple of computer newbies were trying to figure out how to take a picture of themselves on the computer and somehow they recorded themselves and it ended up on YouTube. So when I got home I had to look it up and it is pretty funny.
Tuesday, September 13, 2011
Sunday she sang with the choir in Church and everyone was happy to have her back in the loft. The service was a special commemoration to Sept. 11 First Responders and prayers for families and the choir sang a special song. She looked good but obviously I couldn't hear her over anyone else.
Thursday is her birthday so we are going to Good's in Kewanee to meet up with the Aunts and have lunch. I'm sure she would appreciate a card from everyone as she will be turning 73. It marks a special occasion for her as she is living with cancer. I'm hoping that there will be many more candles on her cake for many more years to come!
Friday, September 2, 2011
It is in the same place that she had the last treatment, on the third floor of the hospital. The room isn't as comfortable as the Cancer room at Dr. Porubcin's office but she's not going to be picky. It is still a nice facility and the nurses are good.
The nurses at Dr. Porubcin's office still have her on the waiting list with the drug company... so hopefully when the next treatment comes up the first week of October she will have Doxil available.
Wednesday, August 31, 2011
Tomorrow she is going to get her port flushed. It hasn't been accessed in a month, and that can cause hiccups when it comes time for the treatment, so getting that done will keep things going along when it's time for the Doxil.
Monday, August 29, 2011
They scheduled chemo for Tuesday afternoon, but then mom called and said that they gave the last bag of Doxil to another person, so they had to order more. We thought the Doxil shortage was taken care of last week but I guess they are still having issues. Hopefully she can get in for a treatment on Thursday, but they will call her as soon as they know. She really doesn't need this hiccup right now since things are going so well.
Dr. Porubcin wants to do two more rounds of Doxil treatments and then another CT scan. If all is well, then maybe she can get a break from the chemo for the winter and see how it goes.
She has been feeling good these last couple of weeks, and her feet have not been that bad either. Red and sore but no blisters.
Wednesday, August 24, 2011
Friday, July 22, 2011
She is rescheduled for a doctor appointment in 5 weeks, but they didn't reschedule her for chemo. The nurses at Trinity weren't sure if more Doxil would turn up at that point or not.
As if having cancer isn't bad enough, the drug that you depend on is now is shortage. And it's about the only thing that mom has that we can have a little glimmer of hope of something working. If this becomes a bigger setback it could throw her CA125 count off. It has been such a delicate thing - I think consistency is the key with Doxil. And keeping her on the regimen is crucial.
The chemo went fine yesterday and the were able to hook her up in another part of the hospital (not the normal Chemo room at Trinity) due to the fact that the Infusion Center had the Doxil and not the Cancer Room. It's confusing but at least it got accomplished.
They didn't have a CA125 number available, so mom said she was going to call today and find out. Her blood work was fine - and it looks like the iron infusions worked well. She had her last iron infusion Wednesday and they didn't schedule any more.
One of the nurses at Trinity, Sherry, is helping with all of this Medicare Part D(onut hole) issue, so we should have some good options worked out by the time Caterpillar discontinues her prescription plan. Mom expects to get their final letter soon, and thinks that she'll have until at least September to be covered under Caterpillar before going to Blue Cross Blue Shield's Medicare Part D. There are options where mom can get grant assistance from some foundations during the gap phase.
Interesting point: Supposedly the Obamacare plan was to eliminate these caps set by prescription plans, however, some companies such as Caterpillar, were able to write themselves out of the equation and continue to enforce the limit. I suspect this was done by lobbyists - which in my mind tells me who really runs our government. I have to do some [more] reading about Obamacare prescription plans but that's my immediate impression. I wish I could read more than two pages at a time without falling asleep.
Her feet are taking a beating- fortunately cousin Gayle brought some Udderly Smooth lotion and cousin Dennis sent some of the Udderly Smooth tubes for her to keep handy, so she's good to go. Our HyVee store in Rock Island is now carrying the 4 oz tube, so that's nice. At least someone listens to me! I put in the request a few months ago and they have been carrying it since June. Now if only I could get them to stock TAB soda again, I would be a happy camper.
Sunday, July 17, 2011
Her feet were really bad the last couple of weeks - especially the week of Lois' funeral. Several blisters (larger than before) were popping out and the bottoms were red and peeling. She was keeping the ice on them and the Udderly Smooth lotion, and that alleviates some of the burning. I would say that the heat probably aggravates her feet more than in the spring... so hopefully this will be the worst of it for the next couple of months.
Sunday, July 3, 2011
Otherwise, mom has been feeling ok except for her feet. The hot weather (and we had some doozies last week) really irritate the soles of her feet. And she has been on her feet quite a bit last week as well so that doesn't help. And she will be on her feet a lot this week helping with Lois' visitation and funeral so she is in the mindset that she has to deal with it for now. She has been going to see Ralph, Lois' husband in extended care at the hospital, every day as well.
I don't even know where to pick up about the "Donut Hole" prescription insurance issue. Mom believes she is going to go with Blue Cross Blue Shield, as it really doesn't matter who the insurance carrier is - it's all Medicare Part D and it's all the same. She is learning more of the nuts and bolts of the plan, and now there seems to be not only donut hole (they like to call it a GAP) issue, but now there are Tiers of co-pay coverage: Tier 1, Generic Drugs; Tier 2, Preferred Brand Drugs; Tier 3, Brand Drugs; Tier 4, Specialty Drugs.
And guess what Tier the Lovenox is - yep the two highest Tiers.
They have two plans, a "Value" plan and a "Plus" plan, and depending on the plan she selects, will depend on her monthly premium, deductable and then the co-pays for the drugs. Both indicate that that when the GAP hits, she will receive a discount on brand name drugs, but I can't imagine what they think a "discount" is. After the gap she will pay whichever is the greater amount - flat copay or 5% coinsurance for the drug.
At (another issue) is the original letter from Caterpillar stating that she has reached the lifetime maximum benefits of the prescription insurance plan. If Obamacare is intended to do away with caps, then technically mom should be reaching a "cap," unless the government made a deal with Caterpillar that allowed them to have a cap. Now I need to read more about the health care reform.
That is what turns the donut hole into a rabbit hole.
Friday, June 24, 2011
Monday, June 20, 2011
Mom had her chemo on Thursday (Doxil) and that went well. On Saturday we went to the Geneseo Arts and Crafts in the Park to check out her Jazzercise club and then see what we could buy that we really didn't need. I ended up with a bag of rocks andmom bought some kettle corn popcorn for the boys. It was a great morning and we saw a lot of people out and about. That's the best part of a hometown - going back and seeing familiar faces. Everyone there was happy to see mom (photo of mom and Connie Paris) and gave tons of hugs and "you are on the prayer list" comments. It makes me feel at ease that she is in good hands as I can't be out there all the time. We ran into neighbor Marion and had lunch at the Congregational Church under a tent.
Wednesday, June 15, 2011
Tuesday, June 14, 2011
Tuesday, May 31, 2011
Tuesday, May 10, 2011
Thursday, May 5, 2011
Friday, April 22, 2011
Sunday, April 17, 2011
Wednesday, April 6, 2011
Tuesday, March 29, 2011
Sunday, February 20, 2011
Friday, February 11, 2011
Wednesday, February 9, 2011
Tuesday, February 8, 2011
Monday, February 7, 2011
Sunday, February 6, 2011
Tuesday, February 1, 2011
Tuesday, January 25, 2011
Friday, January 21, 2011
Tuesday, January 18, 2011
Wednesday, January 12, 2011
Monday, January 3, 2011
Good news: mom's CA125 count is down to the 400 level. It is not down as much as we wanted, but I'll take it. I really don't know what else could gauge the effectiveness of the chemo at killing the cancer if we didn't have that number.
There was a law passed last month: Johanna's Law. Actually it was the renewal of an old law… a reaffirmation/reauthorization for the Centers for Disease Control and Prevention (CDC) to develop and implement campaigns to raise awareness and educate women and medical professionals about the signs and symptoms of gynecologic cancers. http://bit.ly/dLvnFG
While that is all nice and good, I think that money going toward that cause could be better used for prevention and screening of Ovarian Cancer. Because with Ovarian Cancer – once you start getting the symptoms (and really pay attention to the symptoms) it's too late. There's no "pre-emptive" screening for Ovarian Cancer. You can't walk in to your doctors office and ask for a count without having symptoms to back it up. That is the catch 22.
Before mom started getting sick, we didn't run across any ovarian cancer awareness campaigns of any sort. And supposedly there was $16 million dollars from the Johanna Law going toward getting the message out.
Mom wasn't in the risk category because we have no family history of the cancer. But if Johanna's Law is supposed to do its job, we should be hearing more about gynecological cancers in the most conspicuous places…maybe a coffee shop or at the grocery store. Church?
I read an article the other day about Ovarian Cancer prevention and screening study done by Duke University. http://bit.ly/hHKU9Y One of the doctors stated that more work needs to be done to find better approaches to screening methods. They are exploring models to determine better preventative methods and screening methods before things get out of hand. They even talk about the high-risk group – which is obvious, but the end all is a screening method for the rest of women. At this point I consider any woman who doesn't have a history of cancer in the family to be at high risk for Ovarian Cancer.
To be continued.