I got a call from Roswell this morning. Apparently, the final word on that first study is . . . the person ahead of me was not eligible, so I got the slot after all!! I was shocked because Dr. Dy made it sound like it was a pretty definite no go last Friday. I go for all the preliminary testing on Thursday. So, as long as everything checks out, I should be starting treatment sometime next week. No hair loss and no yucky fatigue to deal with. Let's hope it works!!
Sending positive thoughts and prayers for the person who wasn't eligible, and hopes for a beneficial alternative treatment.
Monday, October 31, 2011
Saturday, October 29, 2011
A slight change in plans . . .
I received a call from Dr. Dy late yesterday afternoon. I think I neglected to say in my last post that there was one person ahead of me for the one slot left in this study. We were told that there were some issues regarding eligibility for this person, so they didn't think he/she would get the slot. Dr. Dy seemed relatively certain that I would get the slot. Well, it looks like this other person is going to get it after all. I am a bit disappointed. But, then again, who knows if it would have worked anyway.
So, on to plan B. There is another study that I can get into pretty quickly with a sister drug of a chemo that I had earlier this year. The good news: My tumors responded to the chemo, so hopefully they'll respond to this drug. It's administered by infusion at the hospital once every 3 weeks, so less time at the hospital. The not-so-good news: Fatigue will be an issue, as well as some neuropathy. And, I will lose my hair. :( Oh well.
It might be kind of fun looking for a new wig. My old one is blond. I'm just not comfortable being a blond anymore. I kind of like the silver/grey in my hair. I think I might try to keep that color scheme if I can. Curly or straight - I'm not sure yet. I'm open for suggestions!
So, on to plan B. There is another study that I can get into pretty quickly with a sister drug of a chemo that I had earlier this year. The good news: My tumors responded to the chemo, so hopefully they'll respond to this drug. It's administered by infusion at the hospital once every 3 weeks, so less time at the hospital. The not-so-good news: Fatigue will be an issue, as well as some neuropathy. And, I will lose my hair. :( Oh well.
It might be kind of fun looking for a new wig. My old one is blond. I'm just not comfortable being a blond anymore. I kind of like the silver/grey in my hair. I think I might try to keep that color scheme if I can. Curly or straight - I'm not sure yet. I'm open for suggestions!
Wednesday, October 26, 2011
Clinical Trial
Ken and I went to Roswell for an appointment with one of the doctors who is over their clinical trials. She (Dr. Dy) was great. I dealt with her a little bit the last time we went this route, and she was the one doctor I really liked.
She told us about a clinical trial at Roswell that has one slot remaining. It starts next week. I don't remember the name of the drug. It has a long name with numbers after it. The paperwork is in my purse somewhere. The idea of this drug is to get into the tumors and cause them to implode or self-destruct. It would be administered by infusion at the hospital. The infusion would only take an hour, but I would have to stay a total of 12 hours so that they can monitor my blood pressure. Apparently, when they tested this drug on DOGS, their blood pressure dropped. Yes, I said dogs. No worries. They've done plenty of testing on humans, too. I am not the first. In fact, to date, they haven't seen any blood pressure problems in people. But, protocol requires that they monitor us humans closely just in case one of us has a bit of canine somewhere in their family tree. Kidding.
So, I would go to the hospital one day a week for three weeks, then have the fourth week off. There are no other major side effects with this drug, so I should be able to keep working and doing normal stuff. Yay!! And I can keep my hair!!! (A small tender mercy, but so appreciated!) They'll do a CT scan every 8 weeks to see how I'm doing. If there is shrinkage, no progression, or very little progression, I can stay on it. So, here's hoping I have NO allergic reactions, and here's hoping that in 8 weeks I'm in good a shape as I am now, or better!
She told us about a clinical trial at Roswell that has one slot remaining. It starts next week. I don't remember the name of the drug. It has a long name with numbers after it. The paperwork is in my purse somewhere. The idea of this drug is to get into the tumors and cause them to implode or self-destruct. It would be administered by infusion at the hospital. The infusion would only take an hour, but I would have to stay a total of 12 hours so that they can monitor my blood pressure. Apparently, when they tested this drug on DOGS, their blood pressure dropped. Yes, I said dogs. No worries. They've done plenty of testing on humans, too. I am not the first. In fact, to date, they haven't seen any blood pressure problems in people. But, protocol requires that they monitor us humans closely just in case one of us has a bit of canine somewhere in their family tree. Kidding.
So, I would go to the hospital one day a week for three weeks, then have the fourth week off. There are no other major side effects with this drug, so I should be able to keep working and doing normal stuff. Yay!! And I can keep my hair!!! (A small tender mercy, but so appreciated!) They'll do a CT scan every 8 weeks to see how I'm doing. If there is shrinkage, no progression, or very little progression, I can stay on it. So, here's hoping I have NO allergic reactions, and here's hoping that in 8 weeks I'm in good a shape as I am now, or better!
Sunday, October 23, 2011
A couple of things . . .
My husband and I had our first "drain date" last Thursday. We set up his laptop on the dining room table so we could go step by step along with the instructional DVD. We laid out all of the paraphernalia on the blue sterile field. (That's the official medical term. It's a large blue paper towel, but that doesn't sound as important.) We turned on the DVD and began the process. Ken got me all hooked up to the special vacuum sealed bottle, broke the seal, and waited for the floodgates to open. We got a drip . . . then another drip . . . then two drips. Very underwhelming. We thought that maybe we did something wrong, so we went over everything again. Still, nothing but drips. We got maybe 20 cc's of fluid. Quite a difference from the 800 cc's we got with the first drain at Roswell last week. I was sure there was more fluid in there and thought there must be an obstruction of some kind. I was particularly concerned because I had plans to go to a fun women's conference in Rochester Friday and Saturday, and I didn't want anything to get in the way of that.
The next day, I called Roswell and told them what happened. They told me to come in, go to x-ray first, and then go to the thoracic clinic. I thought for sure they were going to have to flush the catheter somehow, which sounded very uncomfortable to me. By the time I got to the clinic, they had already seen the x-ray. I was told it looked great. My lung is almost back to normal and there is very little fluid left in the cavity! I was really surprised. I thought it would take a lot longer for the fluid to dissipate. That's why I was sure there was something wrong with the catheter. They did a drain there just to put my mind at ease, and again only got about 20 cc's. They want me to keep the catheter for a while longer just to be on the safe side which is fine with me. It should be coming out sooner than later, though, which is awesome!
I left Roswell feeling great and looking forward to "Time Out for Women" in Rochester. It was held at the convention center there with incredible speakers and musicians. It's sponsored by our church, the Church of Jesus Christ of Latter-Day Saints (Mormon), but there were hundreds of women there, many of different faiths. I was so looking forward to the uplifting and inspirational messages and music. Most of all, I was looking forward to a brief but much needed escape from all things CANCER! Surprisingly (or maybe not so surprisingly), I found this was not to be. I discovered that too many people have been touched by cancer in some way for it not to come up. Dallyn Vail Bayles was a singer there at the conference - a very incredible singer, by the way. He introduced one of his songs by telling us that he had recently lost two family members to cancer. One of them was a young mother of two. Before she passed, she requested that Dallyn sing her favorite song at her funeral called "Better Than I". Some of the lyrics:
If this has been a test
I cannot see the reason
But maybe knowing I don't know
Is part of getting through
I try to do what's best
And faith has made it easy
To see the best thing I can do
Is put my trust in You
For . . .
You know better than I
You know the way
I've let go the need to know why
For You know better than I
Needless to say, I dissolved in a puddle of tears as he sang that song. Not sad tears, but incredibly grateful tears. He was singing exactly what has been in my heart. The combination of being in a room filled with faith-filled women and listening to music that spoke to my heart was overwhelming. The Spirit was so strong.
Later in the program, we had the privilege of hearing from an incredible woman who had had 5 major operations in her life due to cancer. The last one left her completely blind. She was amazing! She admitted that after that last surgery, she really didn't feel like she wanted to continue in this life. But, in time, she found her smile again and was able turn things around. Some of the stories she told were hysterical. She was not only a wonderful example of faith and strength, she exuded a love of life and the ability to be truly happy in spite of trials.
No escape from cancer for me. That's OK. It is what it is. I am blessed to be touched by those who have been inspired or strengthened in some way in connection with this crazy disease.
The peace and gratitude I feel is due to the love of God, the Father and His son, Jesus Christ. That love not only lightens my burden and makes it easier to bear, it causes me to feel true joy in spite of it all. My heartfelt desire is to pay that blessing forward to those who are struggling to understand why these things happen sometimes.
The next day, I called Roswell and told them what happened. They told me to come in, go to x-ray first, and then go to the thoracic clinic. I thought for sure they were going to have to flush the catheter somehow, which sounded very uncomfortable to me. By the time I got to the clinic, they had already seen the x-ray. I was told it looked great. My lung is almost back to normal and there is very little fluid left in the cavity! I was really surprised. I thought it would take a lot longer for the fluid to dissipate. That's why I was sure there was something wrong with the catheter. They did a drain there just to put my mind at ease, and again only got about 20 cc's. They want me to keep the catheter for a while longer just to be on the safe side which is fine with me. It should be coming out sooner than later, though, which is awesome!
I left Roswell feeling great and looking forward to "Time Out for Women" in Rochester. It was held at the convention center there with incredible speakers and musicians. It's sponsored by our church, the Church of Jesus Christ of Latter-Day Saints (Mormon), but there were hundreds of women there, many of different faiths. I was so looking forward to the uplifting and inspirational messages and music. Most of all, I was looking forward to a brief but much needed escape from all things CANCER! Surprisingly (or maybe not so surprisingly), I found this was not to be. I discovered that too many people have been touched by cancer in some way for it not to come up. Dallyn Vail Bayles was a singer there at the conference - a very incredible singer, by the way. He introduced one of his songs by telling us that he had recently lost two family members to cancer. One of them was a young mother of two. Before she passed, she requested that Dallyn sing her favorite song at her funeral called "Better Than I". Some of the lyrics:
If this has been a test
I cannot see the reason
But maybe knowing I don't know
Is part of getting through
I try to do what's best
And faith has made it easy
To see the best thing I can do
Is put my trust in You
For . . .
You know better than I
You know the way
I've let go the need to know why
For You know better than I
Needless to say, I dissolved in a puddle of tears as he sang that song. Not sad tears, but incredibly grateful tears. He was singing exactly what has been in my heart. The combination of being in a room filled with faith-filled women and listening to music that spoke to my heart was overwhelming. The Spirit was so strong.
Later in the program, we had the privilege of hearing from an incredible woman who had had 5 major operations in her life due to cancer. The last one left her completely blind. She was amazing! She admitted that after that last surgery, she really didn't feel like she wanted to continue in this life. But, in time, she found her smile again and was able turn things around. Some of the stories she told were hysterical. She was not only a wonderful example of faith and strength, she exuded a love of life and the ability to be truly happy in spite of trials.
No escape from cancer for me. That's OK. It is what it is. I am blessed to be touched by those who have been inspired or strengthened in some way in connection with this crazy disease.
The peace and gratitude I feel is due to the love of God, the Father and His son, Jesus Christ. That love not only lightens my burden and makes it easier to bear, it causes me to feel true joy in spite of it all. My heartfelt desire is to pay that blessing forward to those who are struggling to understand why these things happen sometimes.
Tuesday, October 18, 2011
We have a game plan . . . well, almost.
Ken and I met with Dr. Khushalani this afternoon. Surprisingly, he had just gotten off the phone with Dr. Deshpande. They FINALLY connected! Woohoo!!
We discussed several different options. He feels that I would benefit most by continuing to go the clinical trial route, while perhaps using the Adrimycin as a possible 2nd line of defense. There are two clinical trials here at Roswell that may be beneficial for me. One of the trials has only one slot left and another patient is being considered for that slot. If for some reason this other patient turns out not to be eligible, I might have a shot. The other trial doesn't begin for 2 weeks and he's not sure how many slots will be available for that one. I'm scheduled to meet with Dr. Dy (dee) in the Clinical Trial Dept next week. She will be able to give us a better idea of what may be available. If it turns out I have to wait a longer period of time than 2 or 3 weeks to get started on something, Dr. Khushalani suggested a couple of rounds of Adrimycin with the heart protectorant could be an option for the interim. He would not suggest using Adrimycin as our first line of defense because while I did have a total response to it the first time, the tumors were back within 3 months. He said if I had gone 6 months or a year without any regrowth, it might make sense to try it again. Since that wasn't the case, the risk to my heart would most likely outweigh the benefit, even with the protectorant. However, he seemed to feel all right about a couple of rounds in the interim, if need be.
We felt pretty good after the appointment. We have met Dr. Dy and feel very comfortable with her. I hope she'll have some good news for us next week in the way of available clinical trials. In the meantime, I feel good. Ken is becoming proficient at helping me with my catheter. Hopefully, it will be able to come out soon. Although, it could be a fun Halloween prop. Hmmm. I'll have to give that some thought.
We discussed several different options. He feels that I would benefit most by continuing to go the clinical trial route, while perhaps using the Adrimycin as a possible 2nd line of defense. There are two clinical trials here at Roswell that may be beneficial for me. One of the trials has only one slot left and another patient is being considered for that slot. If for some reason this other patient turns out not to be eligible, I might have a shot. The other trial doesn't begin for 2 weeks and he's not sure how many slots will be available for that one. I'm scheduled to meet with Dr. Dy (dee) in the Clinical Trial Dept next week. She will be able to give us a better idea of what may be available. If it turns out I have to wait a longer period of time than 2 or 3 weeks to get started on something, Dr. Khushalani suggested a couple of rounds of Adrimycin with the heart protectorant could be an option for the interim. He would not suggest using Adrimycin as our first line of defense because while I did have a total response to it the first time, the tumors were back within 3 months. He said if I had gone 6 months or a year without any regrowth, it might make sense to try it again. Since that wasn't the case, the risk to my heart would most likely outweigh the benefit, even with the protectorant. However, he seemed to feel all right about a couple of rounds in the interim, if need be.
We felt pretty good after the appointment. We have met Dr. Dy and feel very comfortable with her. I hope she'll have some good news for us next week in the way of available clinical trials. In the meantime, I feel good. Ken is becoming proficient at helping me with my catheter. Hopefully, it will be able to come out soon. Although, it could be a fun Halloween prop. Hmmm. I'll have to give that some thought.
Tuesday, October 11, 2011
Who knew using this little catheter could be so involved?
Went to Roswell today to learn how to drain this fluid myself. Well, actually I couldn't do it myself if I had to. It definitely takes 2 sets of hands. But, before I go into that - I ran into Dr. Khushalani in the elevator. I asked him if he had heard from Dr. Deshpande yet and he said no. I told him that he should hear from him today or tomorrow. Truth be told, I wanted to hold him hostage in the elevator and get Dr. Deshpande on the phone right then and there. Would that have been too forward of me?
Back to my training session. The nurse was wonderful. She went through everything step by step. Fortunately, the kits come with written detailed instructions, and there is also a DVD showing the whole procedure. Good thing. I would never remember on my own. Everything has to be sterile, so you can't touch this or that unless you have gloves on. There are "clips" and "valves" and we have to know where they go and in which order. Holy cow!! My mother was there with me to be my 2nd set of eyes and ears, but she probably won't be helping with the draining at home. Ken will be my assistant for that. Poor guy. He didn't sign up for this!
One last addendum - turns out the 2nd pathology report on the fluid came back negative. So, now the doctors are looking at it as a true negative. This is a very good thing. If we can shrink these tumors down with chemo or other means, surgery may yet be an option after all. Woohoo!!
Thanks to everyone for your prayers and good wishes. For every new day the Lord gives me, I am truly grateful.
Back to my training session. The nurse was wonderful. She went through everything step by step. Fortunately, the kits come with written detailed instructions, and there is also a DVD showing the whole procedure. Good thing. I would never remember on my own. Everything has to be sterile, so you can't touch this or that unless you have gloves on. There are "clips" and "valves" and we have to know where they go and in which order. Holy cow!! My mother was there with me to be my 2nd set of eyes and ears, but she probably won't be helping with the draining at home. Ken will be my assistant for that. Poor guy. He didn't sign up for this!
One last addendum - turns out the 2nd pathology report on the fluid came back negative. So, now the doctors are looking at it as a true negative. This is a very good thing. If we can shrink these tumors down with chemo or other means, surgery may yet be an option after all. Woohoo!!
Thanks to everyone for your prayers and good wishes. For every new day the Lord gives me, I am truly grateful.
Sunday, October 9, 2011
Guess who called??
I was at the gas station filling up my tank yesterday when I got a call from Dr. Deshpande. He was so gracious. He apologized up and down for not getting back to me sooner. He said he has had a crazy week which I don't doubt. I don't know how these oncologists do it! Anyway, he went over what we had discussed at our meeting on 9/28. He has emailed Dr. Khushalani with this information and will follow up with a phone call. He tried to call yesterday, but the clinic is closed on Saturdays. He was reluctant to leave a message, so he will call again on Monday. He reiterated that he would be in touch with me as soon as he connects with Dr. Khushalani.
I guess it's true - the squeaky wheel does get the grease. Thanks to those of you who assured me that, under the circumstances, it was OK to be a pest. I will give him till the middle of next week to get back to me. If he doesn't, I guess I'll go back to being my new pesky self!
I guess it's true - the squeaky wheel does get the grease. Thanks to those of you who assured me that, under the circumstances, it was OK to be a pest. I will give him till the middle of next week to get back to me. If he doesn't, I guess I'll go back to being my new pesky self!
Thursday, October 6, 2011
I'm a little teapot . . .
I had my catheter put in today. They drained quite a bit of fluid before they put in the catheter which was quite a relief. My breathing is almost normal again - yay! I still have a bit of a cough, but they tell me that's normal. However, I have to cough "gingerly" because it's quite painful around the incision site. Very unsatisfying! I go back to Roswell on Tuesday to learn how to use my new catheter to drain the fluid myself. It sounds like the more often I drain it, the quicker the fluid will dissipate altogether allowing my lung to inflate and re-position itself as it should be. With any luck, I'll be able to have the catheter removed in a month or two.
I have not heard anything from Dr. Deshpande at Yale. I'm a little disappointed about that. I've emailed him, and I called and spoke with his secretary/receptionist on Wednesday. She took all of my info and said she would give him the message that I was waiting to hear from him. I was hoping I'd hear something today. No luck. Looks like I'll be making phone calls again tomorrow. I really hate to make a pest of myself, but he is not leaving me much choice. I'm not angry, just determined. I honestly don't know how cancer doctors do all that they do. It amazes me. As a patient though, I can't allow them to let me fall through the cracks. I'm anxious to get started with some sort of treatment. Hopefully, I'll connect with him tomorrow.
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