Dec 28 - Blood Transfusion Successful

I was able to get 2 pints of blood at the hospital on Thursday. Although it took all day, we were there until 8:30pm, I had better color and a little bit more energy with the two new pints of blood. Now lets hope that I can keep my red blood cell count up high enough to get chemo next week, January 3rd. I'm still in agonizing pain during the evenings. I hope to get a new pain management plan next week as well. Well, I'll be leaving for the Ritz on the 31st, will be back on the 2nd. Happy New Year Everyone! Thank you all for your prayers. Please continue to pray for me in 2007. Let's hope for a cure this time. Yeah.. I realize it is not likely, but everything I have done in life until now has been against all odds. Why should this be any different?


Love ya for reading my posts.... that means you care!!!

December 27 - Dose #2 of Topetecan Not Successful

A small set back today. My hemoglobin was very low today, 7.5 as well as my platelette counts, 73. I need a blood transfusion. However, there were no rooms available for the rest of the year. So, I will be admitted tomorrow to MD Anderson Hospital for the blood transfusion. I'll probably spend the whole day there, but I will be able to come home at some point. Lovely way to spend my holiday, isn't it? The set back is disappointing, because they will not attempt to give me the Topetecan before my next scheduled appointment which is next Wednesday. This just delays the entire process and gives the disease more time to grow, but I am trying to stay positive (although it's getting harder to find any positive points of view in this ordeal).

My pain has also escalated dramatically to the point that I can't get more than two hours of sleep at a time. My meds were upped considerable today, so hopefully I will be able to get some sleep. Still planning on spending New Year's Eve at the Ritz. They can't take that away from me (at least I hope not).

December 26 - Port Placement Surgery

All went well today. Surgery was a success. Have to keep padding on and can't take a bath for two days, so I don't know what it actually looks like, but at least we know the surgery was successful.

12/21/2006 - Blood Work/PET results

Never a dull day. I received disturbing news today. I had another PET scan on Monday 12/18, partly because the 11/3 PET was vague, but also to have an accurate baseline before starting treatment. Since my pain has increased dramatically over the past several weeks, I suspected that there might be a spread. Unfortunately, my suspicions are correct. The cancer is spreading like wildfire. I have three new lesions on my liver and something around the pancreas as well since 11/3/2006. I see my doctor's PA tomorrow to get a better explanation of the PET findings. My nurse assures me that I am doing the only thing that can be done at this point. It is a good thing that I started the chemo this week. Hopefully the Topetecan will slow down the progression of the lesions. I also have to hope that this new drug, Avastin, is truly a miracle drug and can at least stop the rapid progression and possibly reduce some of the current tumor impact.

12/20/2006 Topetecan Treatment #1

1st Treatment went well. Arrived at 8:30am, was done by 11am. I slept most of the day, but no nausea. Although the chemo went well (I tend to tolerate chemo pretty well) my blood work is questionable. My hemoglobin is very low (they don't know why. they asked if I have had any excessive bleeding, but I have not. maybe there is internal bleeding. I'm not sure, but I'm going to have another CBC on Friday.). My liver enzymes are out of whack and my PT/INR is way high (3.8) . I'm having surgery on Tuesday, which is worrisome with such a high PT. Hopefully I won't have massive bleeding for a 15 minute port placement, but I am nervous, nevertheless.

Finally a Treatment Plan

Dr. Shah has finally written order for me to start Topetecan (cytotoxic chemotherapy) on Wednesday, December 20th. Topetecan will be administered weekly for three weeks, then I will take a one week break. This will be scheduled for 6 cyles (so that means at least 6 months of chemo). I will also be given Avastin concurrently. The Avastin will begin after four weeks (I believe this is because I have to have a port put in and Avastin cannot be administered within 4 weeks of any surgery).

Dr. Ramirez from MDA Houston finally called to give me the opinion of their Review Board. Believe it or not, the Radiologist still has not read my PET films. Interestingly, one of my radiologists here in Orlando felt that the PET was not definitive as to the metastasis and he suspected that MDA would want me to redo the scans, but here I am beginning treatment and the Radiologists out in MDA Houston have no had the decency to read my films and offer their opinion. I am disgusted with them.

At any rate, Dr. Ramirez claims that the board suggests the standard treatment of Topetecan weekly for three weeks and off one week, as Dr. Shah suggests, but to recheck after three months. Whereas Dr. Shah is suggesting to go for 6 months of treatment. Dr. Ramirez does not support adding Avastin. He claims that he can see how Dr. Shah, being a medical oncologist, would find that Avastin has credence, but they (in the field of Gynecological Oncology) have not seen any supporting evidence of Avastin working for cervical cancer. I mentioned that there is a GOG Phase I clinical trail going on right now all over the country for Avastin for recurrent cervical cancer. His response is that only 1% of Phase I trials result in successful findings.

He was stern in his recommendation. I am more excited about Avastin than Topetecan for that matter. In fact, I wish I did not have to take the Topetecan. I wonder if there is some improvement after 6 cycles, if they will discontinue Topetecan but continue Avastin?

Another disappointment is that I had a trip planned to drive up to North Carolina to take my kids to see snow (the little ones have never seen snow). I had plans with two other families. However, now that my chemo will start on the 20th (I was planning to go from the 18th to the 23rd), I have to cancel the trip. Dr. Shah said that it would be ok to push everything out a week and start on the 27th, but my husband and I feel that it would be irresponsible of us to push off the treatment. The CT/PET that showed my recurrence was 11/1/06. At that time, I had no symptoms. Now I am in constant chronic pain requiring pain meds around the clock (it gets a little worse each day). So really.. I think I need to get started. Of course, they are allowed to be irresponsible in taking so long to find me a treatment plan, but it's my life after all. Hopefully I will have other opportunities to take the children to see snow.

Testing

Testing

A glimmer of hope

Good news...finally. I received verbal authorization today that my insurance company will cover one of the drugs that is currently being trialled for Recurrent Cervical Cancer. Although it is still on trial, and not proven for Cervical, this drug has proven to be very successful in controlling the spread of disease in other cancers such as Colorectal and Breast. Now I am just waiting for Dr. Shah to schedule me to start. It may still be a couple of weeks because it is a very expensive drug, so it has to be special ordered and written authorization from the insurance company must be received before the pharmacy will order it. The drug name is Avastin. This is similar to the drug that is being trialled at SKM in NYC. This is the type of drug Dr. Shah was wanting me to trial. Now I can receive it here in Orlando under her supervision. This makes me much happier. It's too bad it took this long to figure this out though, because I have spent weeks calling the different trial sites trying to get in to one. At least I am that much more knowledgeable now regarding the different types of cancer fighting agents that exist and feel good about this choice.

12/06/06 - Still no word from MDA Houston

More crap from MDA Houston again today, believe it or not. The Patient Advocate called me at 3:30pm (mind you their review board meeting that they are supposed to be reviewing my case in this afternoon is from 3-4pm) to tell me that they did not receive the CD. I saw the nurse on Tuesday while I was there with the CD in her hand, on the way to mail it via FED Ex. So I called the nurse to tell her that they did not receive the CD. Faye (nurse at MDA Orlando) said that she had already received that message and that she was able to track it and verify that it had in fact arrived Wednesday morning at 9:18am. I called Kimberly the Patient Advocate to give her Faye's number so that they could communicate.

Within 30 minutes, Kimberly called to tell me that she now was in possession of the CD and would put an expedite order on the reading of the CD. Can you imagine how outraged I am at this point? I totally laid in to her, and she had the nerve to tell me that she just found out about my case two days ago. Nobody had let her know about the complaint I opened when I was in Houston last week. Had I called her, she would have ensured that the reading of the films would have been expedited. Mind you, I did open a complaint with the office manager, who was sent in by the doctor I saw, who also told me he was putting an expedite order on the reading of my PET scans 9 Days ago. So I asked her, was it my responsibility to call her to let her know that I opened a complaint or was it the office manager's role? how is it that 30 minutes ago she didn't even know she had the CD that had been delivered the morning before? She said that they attempted delivery on Wednesday morning to her, but she happened not to be at her desk. Since there was no one to sign for it, it went back to the mail room. So I guess you don't get messages when you have a FEDEX delivered and you are not there to receive it?

Any way you look at this, it is horribly inept, unprofessional and beyond words.

I'm sure you can imagine how livid I am. She complained that I was venting to her when she was just trying to help me. She acknowledged that there was a lot of negligence in the handling of my case, but all she can do is ensure that the matter is handlied properly from this point forward.

I told her that I could not believe MDA Houston could be ranked #1 in the nation or that they were in the business of saving lives. I told her that the doctor himself acknowledged that I am currently on borrowed time, as I have already outlived the average life expectancy of someone with Recurrent Cervical Cancer, and yet no one has considered my case urgent.

I also asked her how they could not have made an exception and found someone capable of reading a paper film rather than one copied on CD (or realized that they did not have the correct format in less than 7 days). Surely someone in MD Anderson was capable of reading the film the old fashioned way.

Anyway.. as you can imagine I am disgusted with them.

And.. they have me scheduled to go visit their Phase I clinic on Dec 21st. As if I have the luxury of waiting until then to discuss possible trials. I guess they knew when they made that appointment time that it would probably take the Review Board this long to discuss my case.

Beyond frustrated.

December 4th - Met with Dr. Shah (MDA Orlando)

If you tuned in last week, you would know that I was supposed to receive a phone call today from Dr. Ramirez, who I saw last week in Houston, regarading the MDA Houston recommendation for my case. While I was sitting in Dr. Shah's office today, MDA Houston happens to call them.

Would you believe that MDA Houston was supposed to review my case today in their Tuesday Review Board (they were supposed to have discussed it last Tuesday, but the Radiologist had not read the PET report or seen the films, which I hand delivered that day; they could not review it on Thursday because they had canceled their Thursday meeting; so today, at 1pm, they call my onc in Orlando to request the PET on CD. They claim that they cannot read the PET in the format that was provided to them; what the heck is up with that? what did they do before they were able to copy them on CDs? Why didn't they say something sooner, like last week when I was there and hand delivered the films to them? This is outrageous and pathetic. They had me open a complaint and speak to their Case Manager. He said that they were putting the Radiology reading on a fast track to make sure that the films were read and reported on prior to Tuesday's meeting. Today the nurse calls me to tell me that this now has top priority. Are they in the business of saving lives or what? OK.. I"m just venting because there is nothing I can really do about it. I'm just outraged that they could be so unprofessional. I do not even care what they have to say anymore. I'm proceeding without their advise.

So... about my meeting with Dr. Shah... She seemed to think that my best option would be to get into any VEGF inhibitor trial that I could get into; however, the only one that is even open and possible at this point is the VEGF Trap at SKM in NY. My onc needs to confer with their research nurse to see if they can work around my need to be on blood thinners.

She did not think it was worth going to Tennessee for the Topotecan/Pemetrexed trial. She felt I would be better off taking Topetecan here, by itself, in the weekly format. She said that there is no proof that combining with Pemetrexed would work any better, so it isn't worth going on trial. The only reason she feels that going on a VEGF inhibitor trial is worth it is because the drug is not commercially available for my cancer type (although it is being trialed all over the place).

I talked to her about petitioning the insurance companies and pharmaceutical company. She said that she has tried this for her breast cancer patients and not had any success. The only time she has been able to get it approved is if the treatment was started out side of Florida (because in Florida they apparently don't have to pay for it). Sounds like she is strictly taking about the insurance companies though and didn't get what I was trying to convey about going directly to the pharmaceutical company.

I don't think that they are willing to administer the drug unless they have pre-approval from the insurance company because the drug costs about 10K a month. Some how they have to pay for those clinical trials.

I happened to call Sorono again today about R763 - Aurora Kinase Inhibitor, and the trial is now recruiting again. So, I called my onc and left a voice mail for her to get me in on the evaluation process.

So here are my possible options, in no particular order:

(1) If SK agrees to allow me to be on blood thinners, VEGF Trap in NYC, requiring travel to NYC every two weeks

(2) R763. This is a pill taken for three days in a row, every 21 days. Would require travel to San Antonio TX every 21 days

(3) Topetecan weekly here in MD Orlando