Topic: First post

Hello all
I've been reading the posts for a while and finally joined it. My husband has been diagnosed with stage IV cc/possibly pancreatic cancer on 10/26/11. He has also spots on liver, tail of pancreas, spots on a spleen and grapefruit size omentum mass. They only biopsied omentum mass and determined it was metastasized, with primary most likely in bile duct. He had gemzar/cisplatin for 6 months, then xeloda, then folfirinox. With folfirinox - Ca19.9 was going up, then down, but last result - went up again. During last 11 months his CA19.9 was as high as 24200, as low as 2290 back in March and now 12350. I have read in doctors' notes that folfirinox was the last attempt to slow cancer down. We haven't talked to his doctor since we found out about the cancer marker and I'm afraid he is not going to offer anything else. Just wondering if anybody had similar experience and what else could be available. I'm guessing doctor will order another CT scan, since his last one was back in May. My husband just had chemo (folfirinox) on Monday and has been having a lot of pain since yesterday. He is on fentanyl patch 100 mcg and after I called his doctor's nurse - doctor doubled it to 200 mcg as of today. So far it's not helping, even with additional Oxycodone and lortab. Husband refuses to go to ER. He has been also getting TPN for the last month, since he is pretty much stopped eating and barely drinking. Any advice is appreciated!

Re: First post

Dear TryingToHelp, welcome to our remarkable family but sorry you had to find us. Not everyone gets that horrible pain but my husband did and the only way we kept it under control was with Morphine. They gave him a long acting 12 hour dose 2 X a day with an hourly dose for breakthrough pain.
As for the doctor, if you feel in any way uncomfortable, we always advise 2nd and 3rd opinions. Where is your husband being treated? It is very important with a CC DX to be at a hospital and with a Doctor who has treated more then a few CC patients. Pain can be controlled but you have to hit on just the right RX for him as everyone is different. IF you feel he really needs to go to ER then you need to make that decision. I know it's hard, very hard but he needs to listen to you! If the pain is not under control it uses up valuable energy that he needs. Have you given any thought or talked to the ONC about Hospice? It does not mean the end as they come out even up to a year ahead but they sure do help a lot in every way. Glad you finally joined in as this is truly the best place to be....if you have to. Please keep us updated on your husband as we truly care.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: First post

Thank you, Lainy. We live in a relatively small city, but there are few big names hospitals 3-6 hours away (Duke, UVA, John Hopkins). Back in November 2011 we did go to Duke for the second opinion and both doctors agreed on the same treatment. I was hoping for experimental treatment, but at that time my husband had jaundice and didn't qualify for anything. It has been quite a roller coaster, like for a lot of people who posted here. In 11 months husband was 6 times in the hospital. It all started with appendix removal, then he had kidney stones, kidney blockage, blood infection, virus infection and last time - blood transfusion. So it has definitely been a battle. I'm wondering if anybody had pain pump for home use? Anybody experienced cancer marker jumping up and down and is it even possible for cancer marker to go back down with the same chemo? What other chemo cocktails are available aside from the ones I mentioned before? I had already asked doctor about chemoembolization and radioembolization, but got an answer that it'd be too risky in his situation. Doctor had not mention hospice and we didn't ask either. What is "normal" - is doctor supposed to bring it up or we should? About ER - I'm hoping that patch will start working in a few hours and if it doesn't work by tomorrow morning - I will insist on going to ER. Anybody out there with similar experience? Thanks again, Alla

Re: First post

Dear Alla, I can't help with chemo questions as Teddy never had chemo. He did have a Whipple surgery then radiation and Cyber Knife. Teddy also had the blood infections and a kidney problem beause the tumor bent his right urter and that had to be stented. Yes, this is a roller coaster ride and the survival of the Caretaker is better the stronger we try to be. As far as Hospice goes usually the ONC brings it up when he feels it is necessary. Teddy was in home hospice for 4  months. As  far as I know Cancers Markers can jump around. Honestly, about the only thing we know for sure is that we know not much as CC has a mind of its own. Thank goodness for this Board and all the wonderful people on it. I know you are going to get answers on the chemo questions but Friday nights are slower. I would think the Fentynal patch would be working by now. I know it didn't work for Teddy but again everything works differrent for everyone. If hubby is still in a lot of pain in the morning I would definately take him in to ER.  I hope you both get some sleep tonight and please let us know what happens......you are NOT alone!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: First post

Thank you, Lainy. I appreciate it...

6 (edited by PCL1029 Fri, 05 Oct 2012 20:50:34)

Re: First post

Hi,
I hope the links below helps.

http://www.cholangiocarcinoma.org/punbb … hp?id=7843

http://www.asco.org/ASCOv2/Meetings/Abs … ctID=88276

God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: First post

Thank you for the link! I appreciate it. The one thing I always find confusing is a response rate. Or partial response. What do those numbers mean exactly? Thanks again!

8 (edited by PCL1029 Fri, 05 Oct 2012 21:37:04)

Re: First post

Hi,
In general, a complete response rate is 100% tumor shrinkage occur;
Partial response is >30% in tumor shrinkage after chemotherapy or radiation treatment.
But as a patient, I do not think that much about the overall response rates due to cholangiocarcinoma is a tough cancer and the recurrence rate is between 50-75% even after resection.(surgery), not to mention if it is unresectable .So for ME, it is meaningless to look at the response rate but rather how the patient feels at a particular point during treatment. If the patient  feels good that day;that means "the quality of life" for that day is good even it is on the chemotherapy the same day.
I may sound a bit depressed to most of you who read my messages , if so,I am sorry; but even I am  now is clean and taking only "maintenance chemotherapy". I never say I am cancer free for the reason I know I have to always guard against this difficult cancer due to its high recurrence rate. Of course every patient is different in his/her  overall health status,eating habits and other risk factors; So what I said may not apply to all of you.
Thanks and
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: First post

Percy, I don't think you sound depressed, I think you just state the truths. I believe people handle truths in diferent ways. We always took the approach much like you as we wanted to know what was for real. Teddy used to say, "now we know, lets fix it". I believe people have a right to know unless they just really don't want to in which case I guess they wouldn't ask. You have done so much massive research we thank you as I am sure it requires many days of work. So, thank you and go to sleep now as it's 1100PM your time! By the way, a thank you for yor your wife as well as she has shared you with all of us.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: First post

Hello Alla....I am not a doctor (we don't have one on this site as of yet) but I would like to share some thoughts with you.   We had very few postings regarding the pain pump, but as far as I remember it worked well for those select few.  The pain your husband is experiencing will not go away; rather it will continue to escalate.  Therefore; it is of utmost importance to stay in touch with his physician.  As you have mentioned if all fails you really don’t have any other choice but to persuade your husband to go to the ER.  The hope is to bring his pain under control only and then for him to return to your home.   

In regards to chemotherapy yes, we have seen a repeat of former chemotherapy, but in these instances the patients had either taken a break all together or he/she came off an intermittent agent or combination of agents and then went back to one of the prior treatments.  In general though, once maximum benefit is reached, a different type of chemotherapy is used. 
In most instances, the rise and fall of tumor markers are a fairly good indication as to how the patient is responding to a particular treatment.   
Hospice can be addressed by either, the physician or by you.  In fact, dear Alla, don’t be afraid to ask questions of any sort.  It is your right to be given information pertaining to your husband’s medical condition and in general physicians welcome it.  You are the best judge in regards to the type of questions asked in your husband’s presence or whether it is best to address certain things privately with the physician.  My husband only wanted to know as much as he could handle therefore, I made sure to follow his clues and obtained information behind closed doors or via a pre-arranged phone conference with his doctor. 

This is such a difficult time; my heart goes out to you.  Often I wonder about the enormous strength required by both, the patient and the caregiver and where we draw it from. 

I wish for your husband to be relieved of his pain and for your strength to continue to guide you as it has all along.  Please stay in touch.  We care.

Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: First post

I appreciate all replies. Pain patch didn't help. Sitting in ER waiting room...

Re: First post

Good move We are right with you! First and foremost is to alleviate pain. Good luck, let us know.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: First post

Alla....tons of good wishes are heading your way.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: First post

Hi, Lainy,
Thanks for your counseling , I really need such encouragement, I think that is the result of " the more you know, the more you know what the limit of human intervention can be."
My wife helps me in letting me do what I want to do and try to keep all other house work done so I need not be worry about other thing except myself. So it is a partnership and I always appreciate. Thanks for asking , I am sure without her help, I will not be the same now.
Again, thanks for your support .
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: First post

Thank you all. He will have CT scan in an hour or so. Gave him diludid for pain, helped a little. I'm guessing they will admit him to hospital. Another waiting game, again...

Re: First post

Alla, I am so glad the Dilaudid is helping. We will anxiously await the Scan. I know just how you feel but stay strong! You never know how strong you are until "strong" is the only choice you have!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

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Thanks, Lainy. Waiting for the results now... What was the exact name of 12 hour pill your husband was taking? And name of the break through pill? If you don't mind me asking...

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You can ask me anything. I know he was on Morphine and I believe the 12 hour dose was 75 or 100 mg with breakthrough hourly of 50mg. THey started out with less but it didn't work.  The hardest thing is to see our boys in that kind of pain!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: First post

Hi Alla,

Pain control has been a huge issue for my husband as well.  He was diagnosed in October 2010 , Stage IV with mets to the spine, omentum, lungs and liver.  He was addmitted twice to the hospital to get the pain under control and also was seeing a pain specialist.  He is now on hospice and taking 60mg 3 x daily of Methadone, 90mg every 4 hours of oxycodone  and neurontin for pain.  The pain never seems to go away but  is mostly at 5 which he says he can tolerate.   

I know how difficult it is to watch them suffer and writhe in pain.  It's been the hardest thing for me to deal with.

If the methadone doesn't start to work I think morphine is the way to go.

Just the opionon of a fellow caregiver.

Good luck and keep us posted.

Best,
Laurie

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Thank you, Lainy and Laurie. I was afraid he was already on too much of pain pills, but his breakthrough oxycodone was only 5mg (2 pills at a time). Of course the patch is now 200 mg now, which didnt make any difference. He also took 20 mg oxycontin twice a day. Did your husbands experience constipation after all those pills? It sounds like patch didn't work for either of your husbands?

Re: First post

Hi back at you. Yes, sometimes Teddy got constipation but at that point he was with Hospice at home and took a daily pill for constipation and had no problems after. I would take a constipation pill over the pain any time. BTW At the end I took him to as Hospice facility and they took him off the Morphine and gave him a Fentenyl patch after I said NO it won't work. When I got there the next day I cannot tell you what he was going through. So they took the Fet. patch off and put him on Dilauded. That didn't work either. It was a nightmare. Its a whole other story. I am not a Doc as I often repeat but Morp was the best for him.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: First post

Based on CT scan - he got bowel obstruction. The ER doctor was rather vague and said he thinks tumor is what created the obstruction. Not sure what else he saw - didn't give much information. Anyway - hubby is getting admitted to the hospital. They put the nasogastric tube into his nose to try to fix it. It sounded that surgery might be needed or not - they are not sure at this point. Gave him another dose of Dilauded, that is helping. I'm relieved that his pain level is now at 3 vs 10.
Now my question is - anybody had bowel obstruction because of the tumor and what was done to fix it? Thanks again!

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Hi Alla:

I'm glad you got at least this partial diagnosis. A bowel obstruction is one of the most painful things one can experience. The NG tubes are not fun, but it should quickly help reduce his symptoms as he decompresses. Hopefully that will make his pain much more manageable.

Mark

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Hi Hi Alla, well at least they have a beginning, somewhere to start and I am so glad his pain level is down to a 3. I bet you would love to just lay down yourself and sleep for a week! Hope tomorrow is a better day for your hubby. Thanks for all the updates, we really appreciate that. Thinking about you!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: First post

Hi Alla,  constipation was a huge issue for my husband.  It was the reason for one of his hospital visits.  Suppositories, enemas and that colonoscopy drink didn't work.  The hospital  gave him go lightly , senna and a ducalex suppository and it worked.   Now he is on 6 senna a day and miralex daily and no more constipation. I think its a matter of finding the right cocktail that works. 
I'm happy to hear the dilaudid is working for him. 

Stay strong.