Uh-oh. Chemo Brain. As if I didn't already have enough trouble remembering anything for more than two minutes. I suppose in some ways this is a good thing, as it explains how and why this problem happens, and suggests at least one way to deal with it. Make lists. Have caregivers or others make lists for you.
http://www.medicalnewstoday.com/articles/253277.php
http://www.foxnews.com/health/2012/11/27/evidence-chemo-brain-verified-by-researchers/
On a different note, here's a question. In one of his presentations, Kabat-Zinn speaks of a condition whereby some people come to think of themselves as being defined by their disease. I wonder what that looks llike. Know anybody with that condition?
Nothing but some minor sniffles yesterday and today. Hoping you do at least as well.
Best to all. Hang in there.
Thursday, November 29, 2012
Tuesday, November 27, 2012
Day 9
A pretty strange day today. Began by waking in my recliner to find home health nurse changing a bandage on my IV. Seemed to suggest the day was pointed downward, but it turned somehow. Highlights include getting some overdue chores done while working with housekeeper, Tami. Favorite was driving Larry IV (power chair) out the yard to the storage shed and maneuvering it through the wet grass and mud to where I had stored the remnants of RoD. (Ramp of Death). The point? Retrieve a piece of 2X4 lumber to make bed elevator blocks. Found a saw in the shed and even managed to saw the block in half without shredding my hands. Why share? Because elevating my legs in bed this way will keep my lymph edema down, and get my fat butt out of the recliner every night. Just a shred of normalcy at a time when they are few and far between.
Next was a new person coming to help me get a bath. I always get a little anxious about hanging it all out in front of someone I've never met, but I'm learning to live with that. It was a great sponge bath at a time when I must be very careful about skin-borne infections as well as all the others. And it feels great to be clean.
The trip to my long time primary care doc was perhaps the highlight, though I barely made it in and out of the car both coming and going.. He agreed to send a letter supporting my disability claim to the VA based on the draft I left him. This is no small favor, as he needs to edit it, have it processed, copies made and mailed. Better yet, he completed a lab order for the chemo clinic doc asking for three tests and a couple preventive injections they apparently hadn't thought of.
But the real kicker with Dr. O. was him sharing his opinion about my diabetic peripheral neuropathy compared to the obvious nerve damage in the lumbar spine caused by several pretty serious disc problems. His point was that he has never seen neuropathy so serious as to cause the kinds of mobility problems (can't walk a step without a walker) and loss of use of all organs in the lower unit. Of course, this is not good news for several reasons, the worst of which is that we have to go back to square one with the diagnostics to figure our what if anything can be done to relieve those problems. I suppose it could also call my VA disability claim into some question, although he makes the point that both neuropathy and spinal damage are obviously involved. He just doesn't know how much damage to attribute to each.
What does all this have to do with pancreatic cancer? We the point of taking the time to share it is that I'm learning daily life must go on with cancer and we do have other things to think about and deal with. That's not to minimize the importance and terror of the cancer. But to say that if we dig into life, we can work with it and find a few smiles here and there.
Best to all.
Monday, November 26, 2012
Day 8 - Nov 26, 2012
Today seemed like a whole lot of drama or excitement or flurry of hustle over the act of dripping two very small bags of medication. Could easily have done this at home and saved all the drama. But it wasn't ALL bad. So, here's the short version.
Because I had a 4 AM departure via taxi, I just avoided going to sleep by doing overdue chores, and got there a little early. Very large hospitals, when empty, seem somehow less than lifeless. The reason for the early shine is that I was having a "PortaCath" device implanted under my collarbone in a day surgery. Easy enough for someone with no attachments, but my catheter bag (cleverly disguised by Wal*Mart bag) wants to flop and tangle and pull itself out when I move from chair to bed to gurney. And if they leave you on the bed to dress, with no wheelchair within reach, well...... Just about every move takes 4 times longer than normal and often some creativity in using "Stick", my cane and constant companion. Imagine using a cane to put on a sock. Happens all the time here.
The procedure was apparently simple and quick. I awoke elsewhere, grateful for the sleep. The Porta Cath was implanted to facilitate chemo drips, blood draws, etc. I am a notoriously horrid stick for blood draws and IVs with many bruises to prove the point. They dance and scream and run around when they see a needle. So this dzugyi can be accessed any time by most anyone with a needle. A small reservoir under the bone but protruding at the surface, with an attached tube running into a large vein just above the heart. Perfect for mainlining. So after 12 hours, the small (1.5") incision hurts and stings a little, but that should be gone within a day or two.. I will be sooooo glad to get rid of these IV lines and their daily flushing ritual. Another half hour to an hour I really don't have to spare. But onward.
I used Kabat-Zinn's mindfulness meditation several times during this adventure. Mostly, when I found my neck and shoulder muscles tensed to the point they could not be relaxed by pulling or kneading. Tension gone in less than a minute. Needed three tries to make it gone altogether. What nice relief.
The chemo treatment room was SRO today. Literally, there were people standing around waiting for one of the thirty treatment chairs to be open. All very friendly. I now I soon saw why. Lunch!!!! A daily ritual, somebody brings in boxes of a hundred or so sandwiches, a box of chips and crackers, a box of Little Debbie snack desserts and a box of drinks. It takes five kids to make the rounds in a line, several times and be sure everyone, patient and staff, does not leave hungry. You can argue the ethics of passing out less than healthy food, but you cannot argue that it gets people to their appointments on time. Same doses as last time. Small bag of anti-nausea liquid, medium bag of Gemcitabine, less than an hour with the pump running.
Then, Ben, my occasional volunteer driver, brought me home to Bud, who started doing backflips for treats and demanded to go out to play "Let's Be Idiots". Great fun, actually.
And there it is. If you are approaching a chemo regimen. My only advice at this point is ask and read. Best bet, by far is your physician, like it or not. The information could mean the difference in your treatment results. Best of luck to you.
b.
Today seemed like a whole lot of drama or excitement or flurry of hustle over the act of dripping two very small bags of medication. Could easily have done this at home and saved all the drama. But it wasn't ALL bad. So, here's the short version.
Because I had a 4 AM departure via taxi, I just avoided going to sleep by doing overdue chores, and got there a little early. Very large hospitals, when empty, seem somehow less than lifeless. The reason for the early shine is that I was having a "PortaCath" device implanted under my collarbone in a day surgery. Easy enough for someone with no attachments, but my catheter bag (cleverly disguised by Wal*Mart bag) wants to flop and tangle and pull itself out when I move from chair to bed to gurney. And if they leave you on the bed to dress, with no wheelchair within reach, well...... Just about every move takes 4 times longer than normal and often some creativity in using "Stick", my cane and constant companion. Imagine using a cane to put on a sock. Happens all the time here.
The procedure was apparently simple and quick. I awoke elsewhere, grateful for the sleep. The Porta Cath was implanted to facilitate chemo drips, blood draws, etc. I am a notoriously horrid stick for blood draws and IVs with many bruises to prove the point. They dance and scream and run around when they see a needle. So this dzugyi can be accessed any time by most anyone with a needle. A small reservoir under the bone but protruding at the surface, with an attached tube running into a large vein just above the heart. Perfect for mainlining. So after 12 hours, the small (1.5") incision hurts and stings a little, but that should be gone within a day or two.. I will be sooooo glad to get rid of these IV lines and their daily flushing ritual. Another half hour to an hour I really don't have to spare. But onward.
I used Kabat-Zinn's mindfulness meditation several times during this adventure. Mostly, when I found my neck and shoulder muscles tensed to the point they could not be relaxed by pulling or kneading. Tension gone in less than a minute. Needed three tries to make it gone altogether. What nice relief.
The chemo treatment room was SRO today. Literally, there were people standing around waiting for one of the thirty treatment chairs to be open. All very friendly. I now I soon saw why. Lunch!!!! A daily ritual, somebody brings in boxes of a hundred or so sandwiches, a box of chips and crackers, a box of Little Debbie snack desserts and a box of drinks. It takes five kids to make the rounds in a line, several times and be sure everyone, patient and staff, does not leave hungry. You can argue the ethics of passing out less than healthy food, but you cannot argue that it gets people to their appointments on time. Same doses as last time. Small bag of anti-nausea liquid, medium bag of Gemcitabine, less than an hour with the pump running.
Then, Ben, my occasional volunteer driver, brought me home to Bud, who started doing backflips for treats and demanded to go out to play "Let's Be Idiots". Great fun, actually.
And there it is. If you are approaching a chemo regimen. My only advice at this point is ask and read. Best bet, by far is your physician, like it or not. The information could mean the difference in your treatment results. Best of luck to you.
b.
Saturday, November 24, 2012
Well, we've begun. I was beginning to wonder if we'd ever get here, but we have and all's well so far.
Day 1 (Nov 19, 2012)
Largely uneventful. Depending on who's reporting I suppose. A good appointment with CB prior to treatment. Beginning to like this doc more and more. He couldn't be less like me, but I am grateful that he treats me as an intelligent adult who can understand all his thoughts if only he's mindful about how he puts them out. We talked briefly about nutritional supplements as I had been talked in to taking a green tea concoction for it's cleansing powers. One of the five ingredients in this compound has the very same physical effect on cancer cells as chemo. For that reason, and needing to be able to understand my body's reactions quickly and accurately, he advised me off the stuff so we are working in a more controlled environment.
The treatment room was my biggest worry and it turned out to be kinda funny. The impression is that of a large hair salon. With several dozen comfy easy chair recliners lining the walls. About a dozen patients when I went in, some there for dialysis as well as some for chemo. What struck me was that everyone seemed to be very familiar with each other and the half dozen or so on the nursing staff. A lot of chit chat back and forth and good-natured greetings and well wishes to departing patients. All very friendly and casual.
They started me off with a small bag of anti-nausea stuff in the IV pick line, followed by a larger bag of the Gemcitabine. Altogether maybe an hour of IV drips. The highlight was their sandwiches and snacks and a really good cup of coffee. The lowlight was my catheter bag springing a leak for no apparent reason while I was in the chair. Seemed like I was the only one in the room the least bit concerned about it.
Day 2.
Virtually no side effects last night. Today nothing more than a mild temp and some sniffles. Could have been from the flu shot I had following the chemo treatment.
Day 3.
Even fewer side effects than yesterday.
Day 4.
Thanksgiving Day. I won't go into the mental gymnastics I did about thankfulness today. One thing I was grateful for was there were no side effects. I did get a number of emails and texts from friends wishing me well, and housekeeper came over just to visit for a couple hours with a treat of some sugar free cookies. Was Skyped by all my girls and first wife, Cindy and we all had some very nice visits. Very grateful for that. It's not easy doing this chemo thing as a disabled old guy alone.
Day 5.
No side effects today. Well one small nausea flare up that amounted to nothing. Came about from a strong cough. Took the nausea pills and nothing more that day.
Day 6.
Cold out there dragging Bud through the woods on the power chair. ("Larry") Led to some sniffles but didn't amount to much or last long.
And so it went. Most of the first week of chemo was pretty uneventful. Monday morning, before my next treatment, I'm going in for outpatient surgery to put a Portacath thing in my neck so they can put the IV drip in their without messing with veins. Supposed to be at the hospital at 5:15. Right. We'll see.
One of the things I'm counting on to help me get through this treatment regimen, and particularly the middle two months of daily radiation, is the practice of mindfulness meditation as espoused by Jon Kabat-Zinn. I've had great success with his work in past years during periods of profound emotional pain. He has practiced this form of pain management at the University of Massachusetts medical center for decades. Look him up and give it a try. You won't be sorry.
See you next time.
Day 1 (Nov 19, 2012)
Largely uneventful. Depending on who's reporting I suppose. A good appointment with CB prior to treatment. Beginning to like this doc more and more. He couldn't be less like me, but I am grateful that he treats me as an intelligent adult who can understand all his thoughts if only he's mindful about how he puts them out. We talked briefly about nutritional supplements as I had been talked in to taking a green tea concoction for it's cleansing powers. One of the five ingredients in this compound has the very same physical effect on cancer cells as chemo. For that reason, and needing to be able to understand my body's reactions quickly and accurately, he advised me off the stuff so we are working in a more controlled environment.
The treatment room was my biggest worry and it turned out to be kinda funny. The impression is that of a large hair salon. With several dozen comfy easy chair recliners lining the walls. About a dozen patients when I went in, some there for dialysis as well as some for chemo. What struck me was that everyone seemed to be very familiar with each other and the half dozen or so on the nursing staff. A lot of chit chat back and forth and good-natured greetings and well wishes to departing patients. All very friendly and casual.
They started me off with a small bag of anti-nausea stuff in the IV pick line, followed by a larger bag of the Gemcitabine. Altogether maybe an hour of IV drips. The highlight was their sandwiches and snacks and a really good cup of coffee. The lowlight was my catheter bag springing a leak for no apparent reason while I was in the chair. Seemed like I was the only one in the room the least bit concerned about it.
Day 2.
Virtually no side effects last night. Today nothing more than a mild temp and some sniffles. Could have been from the flu shot I had following the chemo treatment.
Day 3.
Even fewer side effects than yesterday.
Day 4.
Thanksgiving Day. I won't go into the mental gymnastics I did about thankfulness today. One thing I was grateful for was there were no side effects. I did get a number of emails and texts from friends wishing me well, and housekeeper came over just to visit for a couple hours with a treat of some sugar free cookies. Was Skyped by all my girls and first wife, Cindy and we all had some very nice visits. Very grateful for that. It's not easy doing this chemo thing as a disabled old guy alone.
Day 5.
No side effects today. Well one small nausea flare up that amounted to nothing. Came about from a strong cough. Took the nausea pills and nothing more that day.
Day 6.
Cold out there dragging Bud through the woods on the power chair. ("Larry") Led to some sniffles but didn't amount to much or last long.
And so it went. Most of the first week of chemo was pretty uneventful. Monday morning, before my next treatment, I'm going in for outpatient surgery to put a Portacath thing in my neck so they can put the IV drip in their without messing with veins. Supposed to be at the hospital at 5:15. Right. We'll see.
One of the things I'm counting on to help me get through this treatment regimen, and particularly the middle two months of daily radiation, is the practice of mindfulness meditation as espoused by Jon Kabat-Zinn. I've had great success with his work in past years during periods of profound emotional pain. He has practiced this form of pain management at the University of Massachusetts medical center for decades. Look him up and give it a try. You won't be sorry.
See you next time.
Saturday, November 10, 2012
Abraxane clinical trial results
The Pancreatic Cancer Action Network is pleased to share the positive results of a pivotal clinical trial in the treatment of pancreatic cancer that were announced today by Celgene Corporation (Celgene). Celgene conducted a phase III clinical trial with the intent to show that the combination of its chemotherapy drug, ABRAXANE®, with gemcitabine would improve overall survival in patients with untreated, metastatic pancreatic adenocarcinoma when compared with gemcitabine alone. Treatment with gemcitabine alone has been the standard of care for pancreatic cancer.
In the study, ABRAXANE in combination with gemcitabine demonstrated a statistically significant improvement in overall survival compared to gemcitabine alone. The complete overall survival statistics are not yet available. However, this information suggests that ABRAXANE plus gemcitabine is a safe and effective treatment option for patients with untreated metastatic pancreatic adenocarcinoma. When Celgene releases the full data in support of this trial, we will communicate it to you.
ABRAXANE was approved for breast cancer in 2005 and last month was approved for a type of lung cancer. It is a form of the chemotherapy drug paclitaxel that is modified by the addition of a human protein called albumin.
After the full data is released, Celgene will take this data to the U.S. Food and Drug Administration (FDA) for approval in pancreatic cancer. Until this time, because ABRAXANE is currently approved for the treatment of other cancers, physicians may choose to prescribe it for a pancreatic cancer patient if they feel it is the patient’s best option.
More hope
The results of this clinical trial provide a new tier of hope to the pancreatic cancer community. This news illustrates that trials give patients access to state-of-the-art treatment that may be their best option, and they help speed scientific progress toward therapeutic breakthroughs. Clinical trials are the only way to make progress toward better treatments.
We are so appreciative of those who participate in clinical trials. We believe they are pioneers for progress and make an indelible mark for furthering treatment, and possibly saving thousands of lives in the future. If you have questions about this breaking news, please call our Patient and Liaison Services (PALS) program and speak with one of our trained PALS Associates at 877-272-6226, Monday through Friday from 7 a.m. to 5 p.m., Pacific Time or email pals@pancan.org.
The Pancreatic Cancer Action Network is pleased to share the positive results of a pivotal clinical trial in the treatment of pancreatic cancer that were announced today by Celgene Corporation (Celgene). Celgene conducted a phase III clinical trial with the intent to show that the combination of its chemotherapy drug, ABRAXANE®, with gemcitabine would improve overall survival in patients with untreated, metastatic pancreatic adenocarcinoma when compared with gemcitabine alone. Treatment with gemcitabine alone has been the standard of care for pancreatic cancer.
In the study, ABRAXANE in combination with gemcitabine demonstrated a statistically significant improvement in overall survival compared to gemcitabine alone. The complete overall survival statistics are not yet available. However, this information suggests that ABRAXANE plus gemcitabine is a safe and effective treatment option for patients with untreated metastatic pancreatic adenocarcinoma. When Celgene releases the full data in support of this trial, we will communicate it to you.
ABRAXANE was approved for breast cancer in 2005 and last month was approved for a type of lung cancer. It is a form of the chemotherapy drug paclitaxel that is modified by the addition of a human protein called albumin.
After the full data is released, Celgene will take this data to the U.S. Food and Drug Administration (FDA) for approval in pancreatic cancer. Until this time, because ABRAXANE is currently approved for the treatment of other cancers, physicians may choose to prescribe it for a pancreatic cancer patient if they feel it is the patient’s best option.
More hope
The results of this clinical trial provide a new tier of hope to the pancreatic cancer community. This news illustrates that trials give patients access to state-of-the-art treatment that may be their best option, and they help speed scientific progress toward therapeutic breakthroughs. Clinical trials are the only way to make progress toward better treatments.
We are so appreciative of those who participate in clinical trials. We believe they are pioneers for progress and make an indelible mark for furthering treatment, and possibly saving thousands of lives in the future. If you have questions about this breaking news, please call our Patient and Liaison Services (PALS) program and speak with one of our trained PALS Associates at 877-272-6226, Monday through Friday from 7 a.m. to 5 p.m., Pacific Time or email pals@pancan.org.
Friday, November 9, 2012
Here's what's up, based largely on my Tuesday appt with Dr. Benjamin
Nadeau. aka ChemoBoy Although I met with ChemoBoy several times while
in the hospital, this was my first visit to his clinic. He happened to
be wearing the same disgusting orange shirt he had on at our first
visit. I really wanted to rip it off and set it on fire in the trash
can.
So, here's the chemo plan. Begin on Nov 19 if possible.We're getting a
bit anxious about delaying, but have to get my infections gone before
we start. That also depends on getting a permanent vein port stuck
into my neck so they can pour in the juice more easily than with a
normal IV. I had underestimated the time involved. As it stands, his
plan is weekly for two months on Gemcitabine, the primary popular
standard chemo for pancreatic cancer.Then two months on 5-FU. (love
the name) 5-fluorouracil along with daily radiation.This is the one
that carries the most yukky side effects.Then another two months on
Gemcitabine.
I was pretty encouraged by my visit with ChemoBoy. Perhaps just
because he's been less downbeat than he was in our first meeting. He
went line by line through the mystery of the CBC blood panel results
and explained them in intelligent adult ways. CB was clear about not
getting involved in any clinical trials and not considering some of
the innovative stuff they're doing at Vanderbilt as it really doesn't
seem to work with Pancreatic Cancer. He did say though that their
practice is affiliating with a larger practice in Nashville that is
doing some more innovative things. He referred to these options as
things to consider "if it comes back". Asked him about that and what
he said was it is possible, though not terribly likely that they got
rid of all the cancer with the surgery. If pushed, he's betting there
are some cancer cells running around, likely near the former home of
the pancreas and spleen.
When I asked him why he seemed more optimistic than in our first
visit, he said that he has to be careful and conservative in initial
visits lest patients, in their hopefulness, hear something that makes
them believe he brings a cure. When I asked him why he decided to go
ahead with chemo and radiation/chemo in spite of my present and past
infections and problems, he said he was wanting to go forward because
he "thinks he can do me some good". Having no other place to hang my
hat, I'll take that for now.
Generally, each chemo treatment is a couple hours, though they can
last as long as six. Perhaps a good time to do some leg exercises when
I'm not scooting Larry to the barf room.
Still have the drain in that they used in hospital to drain the
abscess and that will be there till about the 15th. Using a very cool
self administered IV thingy for potent antibiotics. My legs have
become substantially weaker, and it's now a challenge to stand more
than a few minutes, while walking more than a few steps with walker is
pretty much out. Maybe I can improve that with exercise.
Finally, weight is down under 290, from 350 six months ago in
hospital, which we all think is a good thing. Must work on keeping my
appetite and eating good stuff to keep diabetes from running amok.
These days are pretty much eaten up by getting ready for some medical
treatment, going to the treatment, having home treatments from Nursey,
and dealing with questions that come up about previous medical
treatments. Gets old fast. But trying to keep making at least a little
progress each day
Nadeau. aka ChemoBoy Although I met with ChemoBoy several times while
in the hospital, this was my first visit to his clinic. He happened to
be wearing the same disgusting orange shirt he had on at our first
visit. I really wanted to rip it off and set it on fire in the trash
can.
So, here's the chemo plan. Begin on Nov 19 if possible.We're getting a
bit anxious about delaying, but have to get my infections gone before
we start. That also depends on getting a permanent vein port stuck
into my neck so they can pour in the juice more easily than with a
normal IV. I had underestimated the time involved. As it stands, his
plan is weekly for two months on Gemcitabine, the primary popular
standard chemo for pancreatic cancer.Then two months on 5-FU. (love
the name) 5-fluorouracil along with daily radiation.This is the one
that carries the most yukky side effects.Then another two months on
Gemcitabine.
I was pretty encouraged by my visit with ChemoBoy. Perhaps just
because he's been less downbeat than he was in our first meeting. He
went line by line through the mystery of the CBC blood panel results
and explained them in intelligent adult ways. CB was clear about not
getting involved in any clinical trials and not considering some of
the innovative stuff they're doing at Vanderbilt as it really doesn't
seem to work with Pancreatic Cancer. He did say though that their
practice is affiliating with a larger practice in Nashville that is
doing some more innovative things. He referred to these options as
things to consider "if it comes back". Asked him about that and what
he said was it is possible, though not terribly likely that they got
rid of all the cancer with the surgery. If pushed, he's betting there
are some cancer cells running around, likely near the former home of
the pancreas and spleen.
When I asked him why he seemed more optimistic than in our first
visit, he said that he has to be careful and conservative in initial
visits lest patients, in their hopefulness, hear something that makes
them believe he brings a cure. When I asked him why he decided to go
ahead with chemo and radiation/chemo in spite of my present and past
infections and problems, he said he was wanting to go forward because
he "thinks he can do me some good". Having no other place to hang my
hat, I'll take that for now.
Generally, each chemo treatment is a couple hours, though they can
last as long as six. Perhaps a good time to do some leg exercises when
I'm not scooting Larry to the barf room.
Still have the drain in that they used in hospital to drain the
abscess and that will be there till about the 15th. Using a very cool
self administered IV thingy for potent antibiotics. My legs have
become substantially weaker, and it's now a challenge to stand more
than a few minutes, while walking more than a few steps with walker is
pretty much out. Maybe I can improve that with exercise.
Finally, weight is down under 290, from 350 six months ago in
hospital, which we all think is a good thing. Must work on keeping my
appetite and eating good stuff to keep diabetes from running amok.
These days are pretty much eaten up by getting ready for some medical
treatment, going to the treatment, having home treatments from Nursey,
and dealing with questions that come up about previous medical
treatments. Gets old fast. But trying to keep making at least a little
progress each day
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