Has it been a full month? Apologies to anyone who might be looking here for useful information.
We're now a week past the final Gemcitabine treatment. Finally it feels like it's beginning to clear out of my body. Still the annoying runny nose and weepy eyes, and an awful time getting to sleep, but I now feel more "awake" at times during the day. It's a bit of a surprise because I didn't ever know I was less than fully awake.
So now I've managed to make it through all the chemo and radiation they had in mind for me and am feeling not much the worse for wear. I did manage to sleep through my CT scan appointment last week, so will have to go do that on Monday. I'm a bit apprehensive about it because the bad news option leaves little option. But must suck it up and go find out what is or isn't down there.
Was thinking a little while ago that I never did notice any difference from missing my spleen, which they took along with the tumor in early October. Why is that? Does it do nothing other than secrete bile? Is bile necessary for anything, really? Aside from making us bilious from time to time?
So that's all for now. Will post again after I learn the results of the scan next week.
Never give up. Today is all we have anyway.
Showing posts with label side effects. Show all posts
Showing posts with label side effects. Show all posts
Saturday, June 1, 2013
Wednesday, April 24, 2013
So it's been a full month. Nothing to be discouraged about, and something new today to feel a little encouragement about.
Dr N gave me a three week break following completion of the radiation/5-FU therapy. Had planned for two weeks, but the side effects during the first week off were intense enough to cause him to wait another week to clear that stuff out of my system before starting back to Gemcitabine.
Somewhere I read that the first week following daily radiation/5-FU therapy can involve side effects equal or greater than those during the treatment. That did happen with me. The side effects were more annoying than debilitating, but Dr N wanted to make sure that stuff was cleared out completely before beginning the next phase so as not to reduce the effectiveness of the Gemcitabine.
The side effects of radiation/5-FU for me were mucositis including inflammation and some blisters from the lips all the way to the stomach. This pretty much killed my appetite, although I could still get hungry from time to time. Continued losing weight through this period and didn't put a stop to that until last week, when I finally gained two pounds, having forced myself to eat half a rhubarb pie with frozen yogurt. Ugh. Had minor nausea throughout, mostly limited to times when taking medication or eating. I'm sure it was a consequence of the mucositis.
So about a week after stopping the radiation/5-FU therapy, the body began to get back to normal and I started back on Gemcitabine two weeks ago. Was a little concerned that the side effects might be a bit more severe following the experience with radiation/5-FU, but it turns out they have been almost identical to the first two months on the stuff.
One of the fun things that has happened during this period is the way Dr N always asks if I've experienced any abdominal pain during the previous weeks. My answer is and always has been "no", and each time it seems his smile gets a little more broad and the surprise in his voice seems a little more emphatic each time.
The first encouraging thing is one I likely manufactured in my mind, but it was there nonetheless, so I'll take it. After the 30 day followup with the radiation oncologist he said he would schedule me for a six month followup visit. Later that day I realized I had not considered or planned on anything six months out in the past year and it brought a nice warm smile, even knowing it might not be at all relevant.
Now for the (potentially) good news. I asked Dr N to see if he could find an alternative anti-coagulant to the enoxaparin because my medical pharmacy benefit had changed and my co-pay went from $5 to $380 monthly for this subcutaneous monster. Today I got a call from the group pharmacy letting me know that my new prescription for Xarelto (Rivaroxaban) was ready and it should arrive in a few days. This, of course, is for the pulmonary embolism they found in October and apparently is one of the few anti-coagulants that is effective with pancreatic cancer. Don't know much about it except for the few Internet references I've found, but those look very encouraging. My belly will be happy to be done with the bruising and bleeding from that twice daily injection.
That's all for now. Still here. Still kicking. Still hurting. Still smiling. And still looking forward to tomorrow.
Namaste. Never give up.
Dr N gave me a three week break following completion of the radiation/5-FU therapy. Had planned for two weeks, but the side effects during the first week off were intense enough to cause him to wait another week to clear that stuff out of my system before starting back to Gemcitabine.
Somewhere I read that the first week following daily radiation/5-FU therapy can involve side effects equal or greater than those during the treatment. That did happen with me. The side effects were more annoying than debilitating, but Dr N wanted to make sure that stuff was cleared out completely before beginning the next phase so as not to reduce the effectiveness of the Gemcitabine.
The side effects of radiation/5-FU for me were mucositis including inflammation and some blisters from the lips all the way to the stomach. This pretty much killed my appetite, although I could still get hungry from time to time. Continued losing weight through this period and didn't put a stop to that until last week, when I finally gained two pounds, having forced myself to eat half a rhubarb pie with frozen yogurt. Ugh. Had minor nausea throughout, mostly limited to times when taking medication or eating. I'm sure it was a consequence of the mucositis.
So about a week after stopping the radiation/5-FU therapy, the body began to get back to normal and I started back on Gemcitabine two weeks ago. Was a little concerned that the side effects might be a bit more severe following the experience with radiation/5-FU, but it turns out they have been almost identical to the first two months on the stuff.
One of the fun things that has happened during this period is the way Dr N always asks if I've experienced any abdominal pain during the previous weeks. My answer is and always has been "no", and each time it seems his smile gets a little more broad and the surprise in his voice seems a little more emphatic each time.
The first encouraging thing is one I likely manufactured in my mind, but it was there nonetheless, so I'll take it. After the 30 day followup with the radiation oncologist he said he would schedule me for a six month followup visit. Later that day I realized I had not considered or planned on anything six months out in the past year and it brought a nice warm smile, even knowing it might not be at all relevant.
Now for the (potentially) good news. I asked Dr N to see if he could find an alternative anti-coagulant to the enoxaparin because my medical pharmacy benefit had changed and my co-pay went from $5 to $380 monthly for this subcutaneous monster. Today I got a call from the group pharmacy letting me know that my new prescription for Xarelto (Rivaroxaban) was ready and it should arrive in a few days. This, of course, is for the pulmonary embolism they found in October and apparently is one of the few anti-coagulants that is effective with pancreatic cancer. Don't know much about it except for the few Internet references I've found, but those look very encouraging. My belly will be happy to be done with the bruising and bleeding from that twice daily injection.
That's all for now. Still here. Still kicking. Still hurting. Still smiling. And still looking forward to tomorrow.
Namaste. Never give up.
Sunday, March 17, 2013
Heading into the home stretch of the 5-FU/radiation treatment regime. Four sessions remain of the planned 28. Chemo doc removed the 5-FU pump for the weekend, largely due to nasty mucositis, and radiation team gave me Monday off so both can end on Friday. Saturday was not too bad in that I got outdoors for a while and could mostly ignore the discomfort. But it's significantly worse today, and that's surprising as I expected it to go the other way. Ah,well... just five calendar days left for that regimen and then after a break it will be two three-week programs of Gemcitabine IV therapy. I tolerated that very well the first time and hope to have the same experience.
Overall, today is kinda miserable. All food except scrambled eggs looks and tastes bad. Can't chew and teeth remain in glass on sink. As of yesterday, had lost exactly 80 lbs since the diagnosis was made. Be happy to stop after 40 more and chemo doc says that plan should be ok.
So as crappy as it feels, I am determined to make the best of this deal and be grateful that I'm so close to the end of radiation.
As for you, survivor, I hope you are well. Better days may well be ahead.
Keep on truckin' and never give up.
Overall, today is kinda miserable. All food except scrambled eggs looks and tastes bad. Can't chew and teeth remain in glass on sink. As of yesterday, had lost exactly 80 lbs since the diagnosis was made. Be happy to stop after 40 more and chemo doc says that plan should be ok.
So as crappy as it feels, I am determined to make the best of this deal and be grateful that I'm so close to the end of radiation.
As for you, survivor, I hope you are well. Better days may well be ahead.
Keep on truckin' and never give up.
Sunday, March 10, 2013
So much for looking forward to radiation treatments. They're starting to take a bit of a toll and that will no doubt increase as we go for the next two weeks. The only problem I'm sure is related to radiation is the diarrhea. It was bound to happen as I can't imagine how they could get a beam in there without damaging some of the surrounding organs and tissue. The pancreas is, after all, surrounded by other organs and the beam has to go through them to get to the target. Still and all, I have great faith in the oncology radiation doc and the techs. They are extremely careful to get me positioned properly and watch closely as the beam travels across my abdomen. Chemo doc prescribed a med for the blasts and it appears to be working for now.
The 5-FU has begun to have adverse effects again. After they had the pump disconnected for a week, my mouth and throat finally healed and were good as new. That's encouraging to think about how quickly they will heal once we're done with this stuff in two weeks. The effect is common, and I believe is called mucositis, and it inflames the skin of the throat and mouth to the point where I don't really want to eat anything. It could also be caused by radiation in that local area. Guzzling the protein shakes now and then works somewhat. But the stuff I can eat with this problem (dairy mostly, scrambled eggs and hot cereal) tend to aggravate the other problem. There is a deal called Magic Mouthwash that helps some in that the Lydocaine in it numbs the mouth and throat for a couple hours at a time.
Please don't take this as complaining. I'm not. Just passing on the information about this experience so that anyone looking here for information will get what's real.
There is a new release about how Doxepin relieves some Mucositis pain. Here...
http://www.clinicaloncology.com/ViewArticle.aspx?d=Solid%2BTumors&d_id=148&i=February+2013&i_id=932&a_id=22583
All for now. In two weeks I get to ring that damn bell. Never give up. You are a survivor.
The 5-FU has begun to have adverse effects again. After they had the pump disconnected for a week, my mouth and throat finally healed and were good as new. That's encouraging to think about how quickly they will heal once we're done with this stuff in two weeks. The effect is common, and I believe is called mucositis, and it inflames the skin of the throat and mouth to the point where I don't really want to eat anything. It could also be caused by radiation in that local area. Guzzling the protein shakes now and then works somewhat. But the stuff I can eat with this problem (dairy mostly, scrambled eggs and hot cereal) tend to aggravate the other problem. There is a deal called Magic Mouthwash that helps some in that the Lydocaine in it numbs the mouth and throat for a couple hours at a time.
Please don't take this as complaining. I'm not. Just passing on the information about this experience so that anyone looking here for information will get what's real.
There is a new release about how Doxepin relieves some Mucositis pain. Here...
http://www.clinicaloncology.com/ViewArticle.aspx?d=Solid%2BTumors&d_id=148&i=February+2013&i_id=932&a_id=22583
All for now. In two weeks I get to ring that damn bell. Never give up. You are a survivor.
Thursday, February 28, 2013
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.
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.
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.
Thursday, November 29, 2012
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.
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.
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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