October 6, 2012 at 9:16 pm #65319
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…October 6, 2012 at 8:27 pm #65318
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!October 6, 2012 at 7:21 pm #65317
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…October 6, 2012 at 6:51 pm #65316
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.October 6, 2012 at 6:24 pm #65315marionsModerator
Alla….tons of good wishes are heading your way.
MarionOctober 6, 2012 at 5:38 pm #65314
Good move We are right with you! First and foremost is to alleviate pain. Good luck, let us know.October 6, 2012 at 5:00 pm #65313
I appreciate all replies. Pain patch didn’t help. Sitting in ER waiting room…October 6, 2012 at 8:22 am #65312marionsModerator
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.
MarionOctober 6, 2012 at 4:53 am #65311
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.October 6, 2012 at 4:35 am #65310
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.
God bless.October 6, 2012 at 3:56 am #65309
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!October 6, 2012 at 3:47 am #65308
I hope the links below helps.
God bless.October 6, 2012 at 2:57 am #65307
Thank you, Lainy. I appreciate it…October 6, 2012 at 2:28 am #65306
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!October 6, 2012 at 1:58 am #65305
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
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