I had my second week of chemo on Tuesday and my blood work looks good and the Gemzar went into my veins with no burning AND she got my vein on the first prick in a hard place to even find the vein so I was not only impressed with my nurse but happy with the results of no burning. No side effects yet.....that happens about Thursday/Friday which is just a little tiredness and belly burn from the poison (chemo) they inject into me.
I have no chemo next week and even get to stop the Xeloda chemo after another week. So....my body gets one week out of the month to rebuild and then do it all over again. I feel better than I have in AWHILE.
I also saw Dr. Goswami in the a.m. yesterday and he thinks all looks good. Blood is clotting at a safe level but not too thin to cause a brain bleed.....we hope. I will see him again in 30 days but I have my Anti XA (blood clotting test) checked every week. It determines if I need to up my Lovenox shot or lower it....or keep it at 50 mg which is where is has been for two weeks. I think we might have found the magic amount....lets hope.
I almost have my x-mas shopping done but we mostly do stocking stuffers and $$ so it is pretty easy. I kinda miss the days when Pat and I went whole hog the day after Thanksgiving and hit the malls/stores. Notice I said KINDA!
We have heard a little more about the clinical trial with Dr. Chapman at Barnes Jewish in St. Louis. Still need to wait and see 100% what it consists of but they called Jenn and said I would have to be off ALL chemo for 6 months. I don't think I could do that to my body and I would really worry about metastasis. The drug for the clinical trial is the liquid form of Xeloda. I take 3000 mg a day of the pill form. The BIG difference is it would pump the drug right into the tumor and hopefully cause enough shrinkage to remove it. You are kind of a lab rat in these studies. No one knows if it will work or not. Then you have a pump they will surgically implant under your skin and attach it to your inside to keep it in place. Then I would have the liquid chemo injected....I think it is slowly released over a period of time and they fill it back up again. I should know more by the end of January. I am not ruling it out but my dr in Houston says since I am stable, my tumor had NOT grown, and the chemo is slowly killing the tumor....why change something that is working. It's alot to ponder on but it is also the Christmas Season so I am going to try and enjoy the Reason For The Season as I hope all of you do, too!! I would ask that if you have enough money for gifts, Christmas dinner, gas money to get to the malls, cigarettes......find that extra $10 for a donation to a worthy not for profit charity....Salvation Army, Toys for Tots, a local food pantry.......even giving extra at church to help out with poinsettia's, etc. It should be the first thing you do before budgeting for X-mas but I can guess for alot of people, it is not. It is never to late to change!! Pat and I are doing it this year and we give to charities/church all year long.....but we have not always did a little extra at X-mas like we are this year!!
Happy Holidays to all of you and may God keep you safe and WARM!!
Hugs!
Patty
Showing posts with label Chapman. Show all posts
Showing posts with label Chapman. Show all posts
Wednesday, November 30, 2011
Monday, November 14, 2011
The Roller Coaster Continues
I think it's fair to say that we've all (Mom, Me, Amy, Samantha, Pat, Leslie, etc.) been dreading writing on the blog this afternoon/evening.
Dr. Chapman's office called around 3 p.m. today. He is not willing to perform a resection due to the involvement of Mom's hepatic artery in her tumor. In addition to the occlusion in her vena cava, the clotting is extensive in the veins through her liver.
Mom may still be a candidate for the clinical trial of a chemo pump on cholangiocarcinoma patients. Dr. Chapman's office said that the Trial Team would be calling Mom today, but no call came in. The trial has not begun yet, but will soon. We don't have much more information on the pump, but hopefully when the Team calls back, we will. There is a possibility that the pump and/or the chemo regimen Mom was on before will shrink the tumor. If that happens, then she might be a candidate for resection at that time.
My Mom is one of the strongest, bravest people I know. She is coping with the hand that has been dealt her extremely well. However, it is incredibly hard for her to entertain the notion that she might soon be cancer-free, only to quickly realize that 'cancer-free' is further away than she hoped. Please keep her in your prayers tonight and in the coming days, as she attempts to regain her footing. If you have time, please drop her an email, send her a card, message her on Facebook, etc. A little sunshine on a gloomy day goes a long way.
Thank you, thank you, thank you for all your prayers. We know they are being heard. Surgery just isn't in God's plans right now.
Written/Posted by Jenn.
Friday, November 11, 2011
Of course we don't mind waiting...
Dr. Chapman's office called Mom this afternoon around 3:30. He hasn't had enough time to review Mom's scan with the radiologist and doesn't want to be the only one to read it. Mom must wait until Monday (a LONG 60 or so hours from now) to hear his decision.
On the upside, we have 60 additional hours to pray. Go on. Get going! :)
Written/Posted by Jenn.
On the upside, we have 60 additional hours to pray. Go on. Get going! :)
Written/Posted by Jenn.
Thursday, November 10, 2011
Potential Resection
In an effort to describe our anxiousness yesterday, allow me to tell you about our first encounter with Dr. Chapman. After an hour or so of waiting, the nurse finally called Mom's name. We walked down a long hall and turned a corner. Samantha ran into the phone on the wall, knocking it to the floor. A very nice man walks up smiling, says "It happens to the best of us", and picked up the phone. Turns out, the man was Dr. Chapman.
Dr. Chapman is an incredibly straight-forward, genuine man. He reviewed Mom's history and began discussing her options. Mom has intrahepatic cholangiocarcinoma. There are two other types: extrahepatic and hilar. Intrahepatic is incredibly rare. It starts in the center of the liver, so it involves many of the critical structures (veins and arteries). Intrahepatic cholangiocarcinoma is the only type that is not eligible for a transplant. The recurrence rate is unfortunately high. Mom would have to be on anti-rejection medications, and if the cancer did come back her body would be unable to fight it off. Essentially, they could be wasting a transplant liver.
The next option is a liver resection. A resection would involve removing the tumor. Mom had a volume MRI yesterday afternoon at Barnes-Jewish. This type of MRI will allow Dr. Chapman to ensure Mom has enough healthy liver remaining if he can remove the tumor. Judging by the scans he's seen so far, he said it was 'borderline'. He will also have to make sure that she has an artery that is not too involved in the tumor. He thinks that her right hepatic artery may be spared, but until he see the MRI from yesterday he can't say if resection is possible. The resection surgery is quite risky for intrahepatic cholangiocarcinoma. It isn't uncommon that Dr. Chapman actually clamps off all major arteries/veins, removes the liver completely, takes it to the back table to remove the tumor, and puts it back in. Mom will know by tomorrow afternoon if Dr. Chapman is willing to do the resection. If so, it looks as though the surgery would occur fairly soon. The other complicating factor in a resection is that Mom's inferior vena cava is 100% occluded (clotted). If the resection occurs, he would probably remove the entire occluded portion (about 10 inches) of her vena cava and reconstruct it. Even with a resection, due to the size of her tumor, Dr. Chapman believes Mom has a 50% chance of the cancer recurring. There are many unknowns at this point, but we obviously hope that she is eligible for the resection.
The last option, if she can't have a resection, is a clinical trial that Dr. Chapman recently got approved for. It is specifically for intrahepatic cholangiocarcinoma patients and would involve placing a pump just under Mom's skin that would pump chemo through an artery directly into her tumor. It has less side-effects than the chemo she has been receiving, would affect her blood less, and has a better response. It sounds as if Dr. Chapman can't do the resection, then the chemo pump is what he would recommend Mom doing.
It was an overwhelmingly hopeful appointment. Dr. Chapman is the first doctor Mom has seen that has said "Yes, I think there's a legitimate chance I can take the tumor out". And even a 50% chance of recurrence is a 50% chance of her being cancer-free. I think she would take those odds without hesitation.
Mom continues to feel more like herself. She has been walking every day and walked almost a mile yesterday. Her smart-ass witty banter has returned in full force and is a welcome reminder that she is feeling much better. Please pray that she continues to feel well and has enough healthy liver and uninvolved arteries that Dr. Chapman will feel comfortable doing a resection.
Written/Posted by Jenn.
Dr. Chapman is an incredibly straight-forward, genuine man. He reviewed Mom's history and began discussing her options. Mom has intrahepatic cholangiocarcinoma. There are two other types: extrahepatic and hilar. Intrahepatic is incredibly rare. It starts in the center of the liver, so it involves many of the critical structures (veins and arteries). Intrahepatic cholangiocarcinoma is the only type that is not eligible for a transplant. The recurrence rate is unfortunately high. Mom would have to be on anti-rejection medications, and if the cancer did come back her body would be unable to fight it off. Essentially, they could be wasting a transplant liver.
The next option is a liver resection. A resection would involve removing the tumor. Mom had a volume MRI yesterday afternoon at Barnes-Jewish. This type of MRI will allow Dr. Chapman to ensure Mom has enough healthy liver remaining if he can remove the tumor. Judging by the scans he's seen so far, he said it was 'borderline'. He will also have to make sure that she has an artery that is not too involved in the tumor. He thinks that her right hepatic artery may be spared, but until he see the MRI from yesterday he can't say if resection is possible. The resection surgery is quite risky for intrahepatic cholangiocarcinoma. It isn't uncommon that Dr. Chapman actually clamps off all major arteries/veins, removes the liver completely, takes it to the back table to remove the tumor, and puts it back in. Mom will know by tomorrow afternoon if Dr. Chapman is willing to do the resection. If so, it looks as though the surgery would occur fairly soon. The other complicating factor in a resection is that Mom's inferior vena cava is 100% occluded (clotted). If the resection occurs, he would probably remove the entire occluded portion (about 10 inches) of her vena cava and reconstruct it. Even with a resection, due to the size of her tumor, Dr. Chapman believes Mom has a 50% chance of the cancer recurring. There are many unknowns at this point, but we obviously hope that she is eligible for the resection.
The last option, if she can't have a resection, is a clinical trial that Dr. Chapman recently got approved for. It is specifically for intrahepatic cholangiocarcinoma patients and would involve placing a pump just under Mom's skin that would pump chemo through an artery directly into her tumor. It has less side-effects than the chemo she has been receiving, would affect her blood less, and has a better response. It sounds as if Dr. Chapman can't do the resection, then the chemo pump is what he would recommend Mom doing.
It was an overwhelmingly hopeful appointment. Dr. Chapman is the first doctor Mom has seen that has said "Yes, I think there's a legitimate chance I can take the tumor out". And even a 50% chance of recurrence is a 50% chance of her being cancer-free. I think she would take those odds without hesitation.
Mom continues to feel more like herself. She has been walking every day and walked almost a mile yesterday. Her smart-ass witty banter has returned in full force and is a welcome reminder that she is feeling much better. Please pray that she continues to feel well and has enough healthy liver and uninvolved arteries that Dr. Chapman will feel comfortable doing a resection.
Written/Posted by Jenn.
Friday, November 4, 2011
Newfound Hope
First off, I would like to apologize for our lack of consistent posting. It seems as though we post only when Mom has doctor appointments. We hope to start posting more frequent updates.
Since Mom saw Dr. Goswami last week, she has continued to fight a fever. Dr. Houston started Mom on an antibiotic Monday. Thus far, it doesn't seem to be helping. The fever is low-grade, but is usually accompanied by a slight headache and increased heart rate. At this point, the cause is uncertain, so Mom is waiting it out.
This week, in three days, Mom gained 7 pounds. While the goal is for her to maintain or even gain weight, 7 pounds in three days is alarming. It has manifested itself in edema in her legs and lower back. Dr. Goswami thought it might be due to the large volume of water she's imbibing, so he suggested she cut back. Yesterday, she lost 1.25 pounds, but hasn't lost any weight today. Mom's struggle, at this point, is whether she should be up and moving (to help ward off clots) or sitting with her legs propped up. I think she's trying to do some combination of the two. The edema in her face and neck, which are thought to be a result of Cushing's from the steroids, has not improved. It will take some time for the steroids to leave her body, so we're hoping that in the next week, that swelling dissipates.
Mom's blood sugar is FINALLY stabilizing. She hasn't had to give herself insulin for over a week now. This is great news, as preparing meals without carbohydrates is difficult.
Also good news, is that Mom's really feeling better. She has been painting a mailbox for Bartley and I, and finished it yesterday. She has been walking regularly down the driveway and back, and even went to Oblong with Samantha and Sarah for some shopping on Saturday. Any doubts that she may not have great short-term memory due to her brain hemorrhage have ceased. She is feeling and acting more like herself each day.
While Mom was in the hospital last time (about two weeks ago), we withheld some information from the blog. It is difficult to explain how hard it is to have exciting, hopeful news, only to realize shortly thereafter that whatever it was isn't going to happen or work out. The day that Mom was discharged from St. John's, Dr. Goswami came in and asked what was going on with her cancer, as he usually does. We explained that MD Anderson is very happy with the tumor's progress. It is stable, and is actually dying inside. He asked about a doctor at Barnes-Jewish in St. Louis that Mom had mentioned previously. The doctor's name is Dr. William Chapman, and he is known for doing resections and transplants on cholangiocarcinoma patients. Mom told Dr. Goswami that she had thought about calling him that day, but that we hadn't done it yet. Dr. Goswami looked at her for a moment, and then he said "Do you mind if I call him?". She, of course, didn't mind, and Dr. Goswami said he would put a call in.
Mom hadn't heard anything since, and, for fear of pestering, hadn't asked Dr. Goswami about it. Yesterday, Dr. Goswami called Mom at home. Dr. Chapman had returned his call. He told Dr. Goswami that although MD Anderson is very good at determining chemo and radiation regimens, he didn't agree with their general assessment of cholangiocarcinoma. He asked if Mom would be willing to see him on November 9th. :) I know that Mom was overwhelmed by the news, and I can say with a fair amount of certainty that tears of joy, hope, and excitement were shed yesterday by all who got her text. See the links below for more information on Dr. Chapman's cholangiocarcinoma success stories.
Obviously, nothing is certain at this point. We usually try to wait until we know if seemingly good news will pan out in the long run before we let everyone else know. However, with the prospect of a resection or transplant comes immense hope. We couldn't keep it to ourselves. Mom needs every prayer you've got from now until Wednesday morning. Patients who are eligible for these surgeries have to fit a large set of criteria. If you have read anything about cholangiocarcinoma, you know that a resection provides a lengthened survival rate and is better than only chemo/radiation. However, a transplant is the only real means of long-term survival.
Please pray, maybe even harder than ever, that Mom will be a candidate. Pray that Dr. Chapman will see how badly she needs a transplant and wants to live. Pray that if she is eligible for a transplant, that she is one of the 16,000 on the transplant list who receives a liver. Pray that she will finally have hope of living without a tumor, that she will be able to see McKenna and Braeda and know that she will watch them grow up, and that she will grow old, wrinkly, and gray.
Thank you, thank you, thank you for all of your prayers. Without your prayers and God, we know that she would not be here now. And as always, we are ever grateful to Dr. Goswami, who oftentimes is the reason we have hope at all.
http://newsblog.barnesjewish.org/tag/dr-william-chapman/
http://transplantblog.barnesjewish.org/tag/dr-william-chapman/
Written/Posted by Jenn
Since Mom saw Dr. Goswami last week, she has continued to fight a fever. Dr. Houston started Mom on an antibiotic Monday. Thus far, it doesn't seem to be helping. The fever is low-grade, but is usually accompanied by a slight headache and increased heart rate. At this point, the cause is uncertain, so Mom is waiting it out.
This week, in three days, Mom gained 7 pounds. While the goal is for her to maintain or even gain weight, 7 pounds in three days is alarming. It has manifested itself in edema in her legs and lower back. Dr. Goswami thought it might be due to the large volume of water she's imbibing, so he suggested she cut back. Yesterday, she lost 1.25 pounds, but hasn't lost any weight today. Mom's struggle, at this point, is whether she should be up and moving (to help ward off clots) or sitting with her legs propped up. I think she's trying to do some combination of the two. The edema in her face and neck, which are thought to be a result of Cushing's from the steroids, has not improved. It will take some time for the steroids to leave her body, so we're hoping that in the next week, that swelling dissipates.
Mom's blood sugar is FINALLY stabilizing. She hasn't had to give herself insulin for over a week now. This is great news, as preparing meals without carbohydrates is difficult.
Also good news, is that Mom's really feeling better. She has been painting a mailbox for Bartley and I, and finished it yesterday. She has been walking regularly down the driveway and back, and even went to Oblong with Samantha and Sarah for some shopping on Saturday. Any doubts that she may not have great short-term memory due to her brain hemorrhage have ceased. She is feeling and acting more like herself each day.
While Mom was in the hospital last time (about two weeks ago), we withheld some information from the blog. It is difficult to explain how hard it is to have exciting, hopeful news, only to realize shortly thereafter that whatever it was isn't going to happen or work out. The day that Mom was discharged from St. John's, Dr. Goswami came in and asked what was going on with her cancer, as he usually does. We explained that MD Anderson is very happy with the tumor's progress. It is stable, and is actually dying inside. He asked about a doctor at Barnes-Jewish in St. Louis that Mom had mentioned previously. The doctor's name is Dr. William Chapman, and he is known for doing resections and transplants on cholangiocarcinoma patients. Mom told Dr. Goswami that she had thought about calling him that day, but that we hadn't done it yet. Dr. Goswami looked at her for a moment, and then he said "Do you mind if I call him?". She, of course, didn't mind, and Dr. Goswami said he would put a call in.
Mom hadn't heard anything since, and, for fear of pestering, hadn't asked Dr. Goswami about it. Yesterday, Dr. Goswami called Mom at home. Dr. Chapman had returned his call. He told Dr. Goswami that although MD Anderson is very good at determining chemo and radiation regimens, he didn't agree with their general assessment of cholangiocarcinoma. He asked if Mom would be willing to see him on November 9th. :) I know that Mom was overwhelmed by the news, and I can say with a fair amount of certainty that tears of joy, hope, and excitement were shed yesterday by all who got her text. See the links below for more information on Dr. Chapman's cholangiocarcinoma success stories.
Obviously, nothing is certain at this point. We usually try to wait until we know if seemingly good news will pan out in the long run before we let everyone else know. However, with the prospect of a resection or transplant comes immense hope. We couldn't keep it to ourselves. Mom needs every prayer you've got from now until Wednesday morning. Patients who are eligible for these surgeries have to fit a large set of criteria. If you have read anything about cholangiocarcinoma, you know that a resection provides a lengthened survival rate and is better than only chemo/radiation. However, a transplant is the only real means of long-term survival.
Please pray, maybe even harder than ever, that Mom will be a candidate. Pray that Dr. Chapman will see how badly she needs a transplant and wants to live. Pray that if she is eligible for a transplant, that she is one of the 16,000 on the transplant list who receives a liver. Pray that she will finally have hope of living without a tumor, that she will be able to see McKenna and Braeda and know that she will watch them grow up, and that she will grow old, wrinkly, and gray.
Momma and Braeda enjoying an afternoon nap at home.
Thank you, thank you, thank you for all of your prayers. Without your prayers and God, we know that she would not be here now. And as always, we are ever grateful to Dr. Goswami, who oftentimes is the reason we have hope at all.
http://newsblog.barnesjewish.org/tag/dr-william-chapman/
http://transplantblog.barnesjewish.org/tag/dr-william-chapman/
Written/Posted by Jenn
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