Made it to the half-way point today, both for the radiation/chemo segment and the overall treatment regimen. Up until last week I had been looking forward to this point. But the side effects are kicking in and kicking my butt a bit. Actually wasn't sure I'd make today's treatment because in the middle of the night I considered a cab ride to the ER. Mouth sores, mild nausea, sore throat to the point of feeling like throat tissue is peeling and there is some obstruction lodged there.
This didn't happen with the Gemcitabine alone, so it's down to the 5FU. Disappointing because they convinced me that this was the less powerful when it comes to side effects.
Will pour down the cough drops and lemon/honey tea and keep my fingers crossed for some sleep tonight. Just three more weeks of that brand of poison.
One thing that's encouraging is observing the others undergoing radiation as we come together in the waiting room. A most cordial gang of geezers, all very kind and thoughtful. What's encouraging is they never talk about their cancer. They talk about life. That makes for a very healthy perspective for me.
Never give up.
Thursday, February 28, 2013
Sunday, February 24, 2013
The radiation treatment has become less annoying and in fact, I find myself looking forward to it (it's the people) and miss it on the off days. The annoyance is largely from the time and difficulty involved in getting there, getting done, and getting back home. Wheelchair bound with neuropathy it takes two or three times as long to do anything as it would a mobile person. So from beginning to get ready to getting home takes more than six hours for a fifteen minute treatment. Makes it a challenge to get the rest of life taken care of.
Not sure if it's the 5FU chemo or the radiation but some untoward side effects have finally shown up. Not serious yet, but getting little sores on arms, in mouth and on my head. And there was a week of "flu-like symptoms" this week, just sniffling and sneezing to the extent of some minor nose bleeding. Feeling pretty good today with all that stuff.
The radiation machine broke down Friday and they had to go look in Kazikistan for an engineer to fix it. So six hours to miss an appointment. A wee bit annoying.
Otherwise an uneventful week, save for getting the powerchair stuck in the mud today, near but not near enough to the front door. Had made two trips over the same spot while trying to move some planters and pots up onto the ramp and porch to get ready for herb and flower time. It took about two hours to get it extricated, but all is well. Although I had confidence in Plans A, B and C for getting free and into the house, I still found myself getting strangely anxious as I waited while the sun dropped down into the time of uncomfortably cool.
But all's well and I'm kinda looking forward to getting another week of treatment under my belt.
Never give up.
Not sure if it's the 5FU chemo or the radiation but some untoward side effects have finally shown up. Not serious yet, but getting little sores on arms, in mouth and on my head. And there was a week of "flu-like symptoms" this week, just sniffling and sneezing to the extent of some minor nose bleeding. Feeling pretty good today with all that stuff.
The radiation machine broke down Friday and they had to go look in Kazikistan for an engineer to fix it. So six hours to miss an appointment. A wee bit annoying.
Otherwise an uneventful week, save for getting the powerchair stuck in the mud today, near but not near enough to the front door. Had made two trips over the same spot while trying to move some planters and pots up onto the ramp and porch to get ready for herb and flower time. It took about two hours to get it extricated, but all is well. Although I had confidence in Plans A, B and C for getting free and into the house, I still found myself getting strangely anxious as I waited while the sun dropped down into the time of uncomfortably cool.
But all's well and I'm kinda looking forward to getting another week of treatment under my belt.
Never give up.
Friday, February 8, 2013
Not sure which day this is, but it feels like a turning point, and not necessarily a good one. I began radiation therapy in earnest this week and I've been troubled and anxious about it for weeks. The main problem is that my peripheral neuropathy condition makes it very difficult to get onto the radiation "table". It takes one tech to lift my legs, while two hold my shoulders to keep me from sliding off the table. Clearly this facility is not designed with disabled patients in mind. Seems ironic and absurd to me. The people are great, and that helps make up for it. It's as though they know patients are struggling with the facility and the procedures and they have to be on their toes to offset that. Whatever the reason, I'm grateful for that part of it. Five days per week for twenty eight sessions. Two done, bunches to go.
Today we also began Flouorouracil (5-FU) chemotherapy which is intended to facilitate or enhance the radiation treatment. I'd prepared myself for the weekly chemo treatments, but was surprised to find the doctor decided to use a continuous infusion pump instead of weekly IV infusions. So I have this damn pump in a bag strapped around my neck for six weeks. This is and will continue to be annoying as Hell. I'm so sick of tubes pouring stuff in and draining stuff out. It's like I needn't be here at all, so long as the tubes and pumps are doing their jobs. They say the side effects with 5-FU are generally less severe than with Gemcitabine, which I tolerated very well. Doc said I'm more likely to suffer side effects from radiation than from the chemo. Gotta remember he's trying to cure me of this menace when we approached the treatment thinking cure was not a reasonable option.
That's the troubling part of the day. I asked him what he meant when he said, at the onset of treatment, that he "thought he could do me some good." His response today was that although the odds are against us, it's not impossible that we will cure this monster. So long as it's not making matters worse, it's therefore worth doing the treatment. He suggested that the secondary objective was to delay recurrence, which is frequent with pancreatic cancer. And suddenly mortality hit me in the face. Because he said that when recurrence occurs, there is essentially no cure and the cancer will kill you. So in that regard, it's a matter of buying time. For what? How can I use this time to benefit those I love? How can I use the time to experience the fullness of life? Finally coming to encounter the reality of pancreatic cancer. And it's no fun. Could use some ideas here, folks.
Stay tuned. And don't give up. Ever.
Today we also began Flouorouracil (5-FU) chemotherapy which is intended to facilitate or enhance the radiation treatment. I'd prepared myself for the weekly chemo treatments, but was surprised to find the doctor decided to use a continuous infusion pump instead of weekly IV infusions. So I have this damn pump in a bag strapped around my neck for six weeks. This is and will continue to be annoying as Hell. I'm so sick of tubes pouring stuff in and draining stuff out. It's like I needn't be here at all, so long as the tubes and pumps are doing their jobs. They say the side effects with 5-FU are generally less severe than with Gemcitabine, which I tolerated very well. Doc said I'm more likely to suffer side effects from radiation than from the chemo. Gotta remember he's trying to cure me of this menace when we approached the treatment thinking cure was not a reasonable option.
That's the troubling part of the day. I asked him what he meant when he said, at the onset of treatment, that he "thought he could do me some good." His response today was that although the odds are against us, it's not impossible that we will cure this monster. So long as it's not making matters worse, it's therefore worth doing the treatment. He suggested that the secondary objective was to delay recurrence, which is frequent with pancreatic cancer. And suddenly mortality hit me in the face. Because he said that when recurrence occurs, there is essentially no cure and the cancer will kill you. So in that regard, it's a matter of buying time. For what? How can I use this time to benefit those I love? How can I use the time to experience the fullness of life? Finally coming to encounter the reality of pancreatic cancer. And it's no fun. Could use some ideas here, folks.
Stay tuned. And don't give up. Ever.
Thursday, January 24, 2013
Not sure what chemo day this is, but I've finished two three week cycles of Gemcitabine. I have been blessed with few and mild side effects. Some sniffles and sneezes that typically lasted only an hour. Usually occurred on the third day after a chemo treatment. Got a little fatigued in the second cycle and I have only the chemo to point toward.
Now in a period of chemo pause while we prepare for the radiation/chemo phase. Great news today is that it's a 28 treatment plan, a full month less than I'd come to expect. Getting up the gumption to go in there every weekday for six weeks is the biggest challenge so far.
I'm blessed to be at this point, as the CT scan done two weeks back showed no new metastatic growths around the pancreas. There was some swelling and a small pulmonary embolism in the lung which we continue to treat with blood thinner injections.
Today we did another scan, this one to map the parts of my body that are to be blasted with the accelerator. I'm impressed with the docs, but the organization structure for getting to and supporting the treatments gives me pause and pains.
I suppose it's a mixed blessing that I have so many health problems separate from cancer. Leaves very little time to think about the cancer and my prospects.
This below received in an email from Pancreatic Cancer Action Network (PANCAN) today. Keep in mind that PA'NCAN is all about promoting clinical trials and I make no judgment about that one way or another. They do seem to do pretty good and useful work.
**Important Clinical Trial News**
Last November, we shared that Celgene Corporation (Celgene) released positive news relating to its pivotal clinical trial in the treatment of pancreatic cancer. 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. Use of gemcitabine alone has been the standard of care for pancreatic cancer.
Now in a period of chemo pause while we prepare for the radiation/chemo phase. Great news today is that it's a 28 treatment plan, a full month less than I'd come to expect. Getting up the gumption to go in there every weekday for six weeks is the biggest challenge so far.
I'm blessed to be at this point, as the CT scan done two weeks back showed no new metastatic growths around the pancreas. There was some swelling and a small pulmonary embolism in the lung which we continue to treat with blood thinner injections.
Today we did another scan, this one to map the parts of my body that are to be blasted with the accelerator. I'm impressed with the docs, but the organization structure for getting to and supporting the treatments gives me pause and pains.
I suppose it's a mixed blessing that I have so many health problems separate from cancer. Leaves very little time to think about the cancer and my prospects.
This below received in an email from Pancreatic Cancer Action Network (PANCAN) today. Keep in mind that PA'NCAN is all about promoting clinical trials and I make no judgment about that one way or another. They do seem to do pretty good and useful work.
**Important Clinical Trial News**
Last November, we shared that Celgene Corporation (Celgene) released positive news relating to its pivotal clinical trial in the treatment of pancreatic cancer. 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. Use of gemcitabine alone has been the standard of care for pancreatic cancer.
The supporting data was released today by Celgene, showing that overall survival increased by nearly two months (8.5 vs. 6.7) in patients who received the combination treatment. A
59 percent increase in one-year survival was also reported. This information suggests that ABRAXANE plus gemcitabine is a safe and effective treatment option for patients with untreated metastatic pancreatic adenocarcinoma. On average, patients treated with gemcitabine and ABRAXANE did experience more side effects than patients treated with gemcitabine alone, though the combination was still well-tolerated.
59 percent increase in one-year survival was also reported. This information suggests that ABRAXANE plus gemcitabine is a safe and effective treatment option for patients with untreated metastatic pancreatic adenocarcinoma. On average, patients treated with gemcitabine and ABRAXANE did experience more side effects than patients treated with gemcitabine alone, though the combination was still well-tolerated.
The complete findings of this study will be presented at the Gastrointestinal Cancers Symposium in San Francisco later this week. Celgene will then take this data to the U.S. Food and Drug Administration (FDA) for approval in pancreatic cancer. ABRAXANE is already approved to treat breast cancer and non-small cell lung cancer. Before FDA approval of ABRAXANE for use in pancreatic cancer, physicians may prescribe ABRAXANE if they feel it is the patient’s best option.
These positive results indicate another step forward in the treatment of this disease. This success also illustrates that clinical trials can give patients access to state-of-the art treatments that may be their best option. Overall, patients who participated in this trial experienced more time with their families and loved ones. Treatment progress for pancreatic cancer will only be achieved through the clinical trials process. Further, this positive news brings us one step closer to the Pancreatic Cancer Action Network’s goal of doubling pancreatic cancer survival by 2020.
If you or a loved one is facing pancreatic cancer, we recommend that you consider clinical trials as a treatment option every time you discuss your treatment plans. At the Pancreatic Cancer Action Network we maintain the most comprehensive database of pancreatic cancer-specific clinical trials in the country, and we are staffed to help patients understand access and eligibility for these trials. If you have questions about this important news, please call our Patient and Liaison Services (PALS) program at 877-272-6226, Monday through Friday from
7 a.m. to 5 p.m., Pacific Time or email pals@pancan.org.
Sincerely,
7 a.m. to 5 p.m., Pacific Time or email pals@pancan.org.
Sincerely,
Julie Fleshman, JD, MBA President and CEO |
Friday, December 21, 2012
Day 29 was a mixture of pleasure and pain, but overall I'm happy how it turned out. The past week side effects have been mostly absent again. Some sniffles and sneezing, but it always goes away in an hour or so.
Nothing else.
And that's the pleasure part. Doc N is both pleased and surprised by my progress so far with Gemcitabine. He asked me three times about stomach pain, as though he couldn't believe I hadn't had any. The bad news was I was stuck in a wheelchair made for a pre-schooler when what I need is one with a wide load sign.. A couple hours in that and my normal jovial demeanor was heading for the exit fast. Also stumbled several times transferring from and to the wheelchair, but luckily had managed to position my fanny at least part way above the seat when the knees gave out.
The good news? A misinterpretation on my part of Doc N's initial description of the chemo drugs and their side effects. If all goes well with the next three weeks, I will start 5-FU or whatever along with daily radiation. The first good news is that those drips are weekly, not daily. The second is that between the two chemicals, 5-FU is not the one with more pronounced side effects. It turns out the Gemcitabine has more pronounced side effects. So this is likely close to as bad as it gets for me. Unless of course those baddies go viral and we have to get radical. Should get first clue about that in three weeks, as they want to do a scan to check for new malignancies before doing the radiation. Fingers and eyes crossed about that.
Time to drag my achin self to bed. Best to you all. And best wishes for a peaceful pain free holiday.
Oh. It appears that one of the local VA Social Workers has pulled a rabbit out of the hat and convinced the low-income transportation service from the next county north to take me to daily radiation treatment for two months. I hope this does work, as that would be a very large pile to taxi fares. Thank you, young man.
Nothing else.
And that's the pleasure part. Doc N is both pleased and surprised by my progress so far with Gemcitabine. He asked me three times about stomach pain, as though he couldn't believe I hadn't had any. The bad news was I was stuck in a wheelchair made for a pre-schooler when what I need is one with a wide load sign.. A couple hours in that and my normal jovial demeanor was heading for the exit fast. Also stumbled several times transferring from and to the wheelchair, but luckily had managed to position my fanny at least part way above the seat when the knees gave out.
The good news? A misinterpretation on my part of Doc N's initial description of the chemo drugs and their side effects. If all goes well with the next three weeks, I will start 5-FU or whatever along with daily radiation. The first good news is that those drips are weekly, not daily. The second is that between the two chemicals, 5-FU is not the one with more pronounced side effects. It turns out the Gemcitabine has more pronounced side effects. So this is likely close to as bad as it gets for me. Unless of course those baddies go viral and we have to get radical. Should get first clue about that in three weeks, as they want to do a scan to check for new malignancies before doing the radiation. Fingers and eyes crossed about that.
Time to drag my achin self to bed. Best to you all. And best wishes for a peaceful pain free holiday.
Oh. It appears that one of the local VA Social Workers has pulled a rabbit out of the hat and convinced the low-income transportation service from the next county north to take me to daily radiation treatment for two months. I hope this does work, as that would be a very large pile to taxi fares. Thank you, young man.
Wednesday, December 12, 2012
Day 21 - My juice-free day. I am curious to see what will happen with side effects, etc. after missing the regular weekly chemo drip this week. I was supposed to go in for blood work, but they allowed my Home Health Nurse to come wake me at half past the crack of dawn to stick me at home. I am grateful to avoid the two hour round trip, the time getting ready, the shaky transfer to and from the driver's car, and the wheelchair trip up and down my Super Ramp Of Death. Instead, I took Bud for a long romp in Larry IV. Cold and bracing but nice.
This week have been fighting sniffles and coughs and chills. Mostly they pass quickly but today they're sticking around a while. Add to that some difficulty getting to sleep and some hard to shake blues and you have the possible side effects for the week. Mostly get around them ok. For the blues I took Bud out to the woods to find a nice dead branch that we made into a Christmas Tree. Got the new boob tube configured and watched my first home 3-D movie last night. The Avengers, a pretty good flick and a little fun in 3-D with great visual effects anyway. Have done some cleaning in preparation for a visit from a bestest friend Christmas week. And stayed in touch with some friends and acquaintances via social networks and telephone. Those little moves can take a pretty big chunk out of the time the blues have to do their dirty work on me.
Read a NY Times article about aspirin, including a line about a clinical trial that shows it to have remarkable effect in preventing adenocarcinoma. Like the one that was in my pancreas. Too little, too late. But may be good to pass along to those who aren't here yet.
http://www.nytimes.com/2012/12/12/opinion/the-2000-year-old-wonder-drug.html?adxnnl=1&smid=fb-share&adxnnlx=1355339522-Lmxk0bQGoo958jCWGABcEA
With that, I shall continue my adventure with sniffles and Bud. Today we steam clean carpets from the wheelchair. This should be fun.
This week have been fighting sniffles and coughs and chills. Mostly they pass quickly but today they're sticking around a while. Add to that some difficulty getting to sleep and some hard to shake blues and you have the possible side effects for the week. Mostly get around them ok. For the blues I took Bud out to the woods to find a nice dead branch that we made into a Christmas Tree. Got the new boob tube configured and watched my first home 3-D movie last night. The Avengers, a pretty good flick and a little fun in 3-D with great visual effects anyway. Have done some cleaning in preparation for a visit from a bestest friend Christmas week. And stayed in touch with some friends and acquaintances via social networks and telephone. Those little moves can take a pretty big chunk out of the time the blues have to do their dirty work on me.
Read a NY Times article about aspirin, including a line about a clinical trial that shows it to have remarkable effect in preventing adenocarcinoma. Like the one that was in my pancreas. Too little, too late. But may be good to pass along to those who aren't here yet.
http://www.nytimes.com/2012/12/12/opinion/the-2000-year-old-wonder-drug.html?adxnnl=1&smid=fb-share&adxnnlx=1355339522-Lmxk0bQGoo958jCWGABcEA
With that, I shall continue my adventure with sniffles and Bud. Today we steam clean carpets from the wheelchair. This should be fun.
Thursday, December 6, 2012
Day 18. Another largely uneventful few days. These little side effect bouts are a little annoying at worst. Thought I'd add today because we changed the treatment schedule and wanted to see if delaying today's treatment four days had some kind of effect. I believe it did. But not much. I'm getting the sense that the chemo dosage is carefully planned to last the duration of the time between treatments. I know the mind has an awful lot to do with this as well, at least in my history it does. Originally supposed to get treatment #3 on Day 14. I'm sure that I felt the side effect sniffles and cough clear up more and more Monday through Wednesday. Sure enough, my body seemed to have little or no chemical left today, and my blood work seemed to suggest that was true, with the white cell count climbing back above average into it's usual spot. So today I began with sniffles and chills even before the treatment was finished. That should last a few more hours at most. (Sure enough. They've disappeared even before I've finished this.) Next week is my "week off" so I'll be off the juice for about 14 days. Still must go for blood work, but no time in the snack chair.
For some reason, today as Brenda opened the IV line, I could "feel" that juice running off to kill some bad cells. Now, I know it could not work that fast, but the thought was more than b.s. as I've experienced such images a number of times as or just before they came about. We'll see.
The Treatment Room nurses are a breed apart. With four nurses covering up to 28 patients with each at a different place in their treatment sequence, these ladies never ever stop running. Literally. Always a smile and a gentle word or laugh for us, no matter what they're grappling with. And they have the eyes of a hawk and are about as fast on the move. Today, Brenda asked me how the anti-nausea med was working at home and I told her the only nausea bouts were unexpected and brought on by coughing. About ten minutes later I sneezed and she jumped from the station across the room to see if I was going to cough and need the bag. Nope, just smiled instead. I think if we scratch our nose in there, we will have a nurse on it checking for side effects.
Thank you all.
For some reason, today as Brenda opened the IV line, I could "feel" that juice running off to kill some bad cells. Now, I know it could not work that fast, but the thought was more than b.s. as I've experienced such images a number of times as or just before they came about. We'll see.
The Treatment Room nurses are a breed apart. With four nurses covering up to 28 patients with each at a different place in their treatment sequence, these ladies never ever stop running. Literally. Always a smile and a gentle word or laugh for us, no matter what they're grappling with. And they have the eyes of a hawk and are about as fast on the move. Today, Brenda asked me how the anti-nausea med was working at home and I told her the only nausea bouts were unexpected and brought on by coughing. About ten minutes later I sneezed and she jumped from the station across the room to see if I was going to cough and need the bag. Nope, just smiled instead. I think if we scratch our nose in there, we will have a nurse on it checking for side effects.
Thank you all.
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