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I've been gone a bit, but I'm back in search of any advice or insight into anyone who may have had the celiac plexis nerve block (ganglion nerves).
My mom who was dx with stage 3 in Ag 2011 had a temporary block done in February, and then a permanent block done just this past April. She says that the temporary block seemed to be more effective at managing her pain. She went from being in constant pain on 50+mcg fentanyl patches PLUS oxyfast (similar to oxicodone) for break through pain to NOTHING but maintenance 50mcg fentanyl patches applied every 2 to 3 days.
This past "permanent" block she has not had the same positive effect. More pain in general all the time. Not enough (that I have seen at least) to be in agony, but definitely a lot of discomfort. Just wondering if anyone had ever had a SECOND 'permanent' block done before, if that was even an option, or if there were any other options to pain management besides narcotics. She absolutely HATES taking the pain pills.
I had it done in late January. I had constant pain after 5-FU chemo and lost 35lbs. Didn't do well at all and was getting worse. They did the celiac block and worked like a charm. Still feel good with very minimal pain after almost 6 months. I do use oxy pain pills every 8 hours for my pain management. No need for a second as yet, but I would be asking for it. It worked for me. I think the Drs quoted 3 -4 months. I'm doing better.
12/06/11 - Diag w/Stage IV PC on head of pancreas. Liver and lymph mets
06/01/12 - Months of Gemzar chemo. Scan shows 50% smaller in size of liver tumors. Panc tumor shows 10% smaller in size.
10/22/12 - Scan shows spots on lungs. Moving to MM-398 trial. Bad side effects.
12/14/12 - One year mark. Scan shows no appreciable change.
03/06/13 - 15 month mark. Scan not good. Now on Xeloda pills.
Atantnc, welcome back! I was actually just thinking about you the other day and wondering how your mom was doing. If I remember correctly, you were hoping she would be able to have surgery in the future, right? I'm glad to see that she is with you and fighting. I would love an update on how things have been going for her. I can't offer any input on the nerve block though. That is something we haven't had to experience yet.
Bbake1....curious as to what happened with the 5FU that put you in the hospital? If you wouldn't mind sharing, I would be very interested as my dad is on 5FU currently. Just want to be on the lookout for symptoms. Thanks.
Deb
March 21, 2011 - Dad diagnosed. PC on head of pancreas.
April 2011 - Gemcitabine and radiation for a total of 12 weeks.
October 14, 2011 - Successful Whipple procedure. Cancer free! Best 5 months of my life!!!
March 2, 2012 - CT scan and discovery of possible mets to both lungs.
March 23, 2012 - Biopsy confirmed recurrence.
May 2, 2012 - Folfiri regimen started. Stopped after 2 treatments due to infection.
June 2, 2012 - Switched to Xeloda
Sept. 21, 2012 - No more chemo...treatment not working anymore. Now we wait and pray. October 6, 2012 - My dad is now at peace in Heaven, watching over us until we meet again.
♥ Forever in my heart! Miss you every day more than words can say! ♥
BBake1- sounds like what my mom had done the first go around. Worked like a charm for her, too! I'm hoping it provides you with relief for a long, long time!
Deb- So much has happened. I went through a very low point in January- I thought she wasn't going to make it, but things started turning around at the end of February. They finally got her to have a port put in and she was able to get nutrition through TPN after that (still does a nightly 12 hr infusion). That really helped her get her nutrition and weight back up. I guess with the way her tumor was positioned and two stents, it has made it very difficult if not impossible to get enough nutrition via actual eating. I'm pretty sure that was what was bringing her down the most- the inability to eat and thus slow starvation. BUT- I'm happy to say she is at a fairly healthy weight now and able to nibble on things she LIKES to eat instead of depending on actual eating to get her nutrition.
She hasn't been on chemo since BEFORE Christmas- her ca 19-9 tests have levelled off and somewhat stabilized even without the chemo. She had a CT scan done less than a month ago- and it has showed little and insignificant growth-- a possible suspect "shadow" on her liver, but not enough to warrant going back on chemo. However, her recent blood tests have shown a rise in her liver count which has me a bit worried. I'm trying not to freak out, but I'm hoping the cancer hasn't decided to suddenly become aggressive...especially after I was thinking just how lucky I was that she didn't have a very aggressive form of cancer. Fingers are crossed that it is nothing to do with that shadow.
In other news, I got engaged! I'm supposed to go look at wedding dresses for the FIRST go around this Saturday with my mom and my bff I have hope that she will be able to see me walk down the aisle! And I am proud to say that so far, she has beaten the odds given to her when she was diagnosed in July 2011 at Stage 3. It will be a YEAR next month that she has battled this awful beast, and she is still here and doing the things she loves to do!
Here's to keepin' the faith and beating the statistics!
Hello,
Meant for bbake1
I was wondering. I am on gemzyr/abraxane and also having shrinkage of liver mets, but pancreas mass stable. My CA19-9 in creeping up. The doctor says you cannot go by just those numbers. They need to be looked at along with scans. What has been your experience? In following your posts we have similar diagnosis, but I have a year on you...diagnosed Jan. 2011. Regarding celiac plexis block, I had it before treatment began and manage pain well with low dose oxy every 8 hours. I assume the plexus block was permanent. Did not know there were two types.
I'm glad to hear that for the moment, everything is good and they were able to figure out the nutrition thing. Just curious, did the dr's say that surgery may still be an option? You know my dad had the whipple back in october and unfortunately, it has appeared again in his lungs. This cancer is a truly brutal one and very frustrating at times. We need to learn to appreciate the small victories, I guess, right?
On a much happier note, congratulations on your engagement! You know, no matter what happens in the future, you and your mom will always have this to share! And I think that's wonderful!
Glad to "see" you again!
Deb
March 21, 2011 - Dad diagnosed. PC on head of pancreas.
April 2011 - Gemcitabine and radiation for a total of 12 weeks.
October 14, 2011 - Successful Whipple procedure. Cancer free! Best 5 months of my life!!!
March 2, 2012 - CT scan and discovery of possible mets to both lungs.
March 23, 2012 - Biopsy confirmed recurrence.
May 2, 2012 - Folfiri regimen started. Stopped after 2 treatments due to infection.
June 2, 2012 - Switched to Xeloda
Sept. 21, 2012 - No more chemo...treatment not working anymore. Now we wait and pray. October 6, 2012 - My dad is now at peace in Heaven, watching over us until we meet again.
♥ Forever in my heart! Miss you every day more than words can say! ♥
Hello,
Meant for bbake1
I was wondering. I am on gemzyr/abraxane and also having shrinkage of liver mets, but pancreas mass stable. My CA19-9 in creeping up. The doctor says you cannot go by just those numbers. They need to be looked at along with scans. What has been your experience? In following your posts we have similar diagnosis, but I have a year on you...diagnosed Jan. 2011. Regarding celiac plexis block, I had it before treatment began and manage pain well with low dose oxy every 8 hours. I assume the plexus block was permanent. Did not know there were two types.
Sorry Teacher1 I didn't see your post. Permanent install yes, but the effect of the block may only last 6 months or so I was told. It can be re-done at that time. Again, so far so good. The oxy is doing fine alone and I do not see the need for another block. My Dr does not like the CA19-9 numbers and says it is not a definitive indicator of a problem. We don't even look at the CA19-9. He said it was kind if like the PSA for prostate cancer. At first it seemed like a good indicator, but now it is not as reliable. Scans are the only real way of seeing and knowing what is going on. My next scan is Aug 13, Dr visit Aug 14. FYI, 51st b-day Aug 15. So I am hoping for continued good news from the scan. Take care, Bob
12/06/11 - Diag w/Stage IV PC on head of pancreas. Liver and lymph mets
06/01/12 - Months of Gemzar chemo. Scan shows 50% smaller in size of liver tumors. Panc tumor shows 10% smaller in size.
10/22/12 - Scan shows spots on lungs. Moving to MM-398 trial. Bad side effects.
12/14/12 - One year mark. Scan shows no appreciable change.
03/06/13 - 15 month mark. Scan not good. Now on Xeloda pills.
bbake1ue to my concern and increase in numbers and a passage of months, I am being scanned the 13th of August as well with results the 14th. My last ones were good, but those counts keep going up. My doc downplays it like your doc. She says I am clinically stable. I am certainly blessed. After feeling "off" and tired for a few days after chemo, I am pretty OK. I struggle with constipation. That is a constant nuisance and worry. I walk a mile at least every day and eat carefully as well as drink a lot of water. I take low dose oxy which handles the pain well, so I as well do not feel the need for another block. Our paths with this cancer seem similar. I am grateful for your response. Feel better to hear your take on the CA19-9. Praying for good scans for both of us!
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Originally Posted by teacher1
ue to my concern and increase in numbers and a passage of months, I am being scanned the 13th of August as well with results the 14th. My last ones were good, but those counts keep going up. My doc downplays it like your doc. She says I am clinically stable. I am certainly blessed. After feeling "off" and tired for a few days after chemo, I am pretty OK. I struggle with constipation. That is a constant nuisance and worry. I walk a mile at least every day and eat carefully as well as drink a lot of water. I take low dose oxy which handles the pain well, so I as well do not feel the need for another block. Our paths with this cancer seem similar. I am grateful for your response. Feel better to hear your take on the CA19-9. Praying for good scans for both of us!
