May 22, 2017 at 8:33 pm #94422
Gail….Rambling is good, we are here and we understand and want to support you all the way
Are you able to switch to a palliative care team?
So much agree with you, quality of life is taking precedence over quantity of “possible” life. It’s likely that with good support addressing all physical and mental needs your family will enjoy meaningful time together.
Hang in there, dear Gail. Sending a tidal wave of good wishes your way.
Hugs and love,
MarionMay 22, 2017 at 5:43 pm #94421spokanemomParticipant
I am thinking of you and your family today and I pray that the PET results show the cancer has been kept at bay. It sounds like you you are being a true supporter of your husband on this extremely difficult path. I hope you have a positive meeting with the oncologists and you find a little peace in making the next decision.
VictoriaMay 22, 2017 at 3:51 pm #94420positivityParticipant
I know this can be an extremely difficult time, and this a great place to get support. It is always those judgment calls or decisions we need to make that puts pressure on the patient and caregivers. Know that you are doing everything in your power to help, and that is great you are willing for him to try cannabis oil for pain. Treatment can be rough on certain patients and allowing the body to take a break may be the best decision.
These are opinions as I continue this journey also. I understand moving forward as I have in the past 6 months, continue to make decisions and hope for the best.
Keep us posted.May 22, 2017 at 11:11 am #94419darlaParticipant
My heart aches for what you and your family are dealing with right now. I know how overwhelming it must all be. Yes, just try to take it one day at a time. You never know what may be waiting just around the corner. Enjoy what you can and although I know it is hard, know that you have a whole lot of people here that truly understand and care. So keep on rambling. Getting it out does help. Up date us when you can. We truly care. My thoughts are with you today. Take care.
DarlaMay 22, 2017 at 2:11 am #94418
After a very disappointing time last week (platelets were only 55,000 so no treatment could be given) my husband for the first time verbalized that he might not want to o continue treatment. He feels at this point like he is only surviving to be a patient and his quality of life is rapidly declining.
We are going,to have another PET scan tomorrow (without contrast since that makes him ill) and then meet with the oncologist to determine next steps. With all of the complications he has only had 2 treatments since April began and we are hoping to find that the cancer has been held at bay (in which case we will continue with a modified treatment regiment to allow more recovery time) or the decisions will be up to him.
I’ve also reached out to the medical marijuana doctors in our state to get him registered so we can start using the oil. We had decided that once we knew there were no trials available for him we would pursue that path.
I did make arrangements for a psychologist to meet with him on Wednesday to help him work through his thoughts and come to a decision. I know people say that some feel better for a while after they stop treatment, and I am praying that we can get enough good time to get to the end of the school year and our twins’ graduation from elementary school.
I know some of this is a repeat from a prior post but I am just so sad and afraid right now of what the next few weeks and months may have in store for us. I know I need to think in 24 increments but sometimes it’s just too much to bear.
Thanks for your support and for taking the time to read my ramblings.
GailMay 15, 2017 at 8:54 pm #94417
Gail….some time ago a book was written titled: Ready to Live, Prepared to Die: A Provocative Guide to the Rest of Your Life
The authors intention was to build a long lasting memory for her child. Not that I am suggesting for you to ask your husband to read this, but perhaps you this book offers helpful hints as to how you possibly can capture important interactions your kids have with their Dad.
Perhaps you can videotape their interactions. I use the I-phone, it’s easy and quick.
MarionMay 15, 2017 at 2:30 pm #94416
Thanks for your reply. I have taken the kids to a counselor twice now, the last time right after we had been through a week of hospitalization. I try to do my best to tell them what’s happening in advance, whether it’s someone else picking them up from school or changing our normal after school activities.
I’m trying to also find ways to create meaningful memories for the kids with him, and things they can do together when he is feeling well. I definitely feel like I live in multiple realities at the moment, the kids know he’s very ill but not the specifics, his reality of moment to moment life, and then my own trying to juggle it all. I’m completely blessed that my job has been flexible beyond belief.
GailMay 13, 2017 at 4:34 am #94415bglassModerator
Please know my thoughts and prayers are with you as you navigate these most difficult circumstances.
Responding to Marion’s call for ideas on coping approaches, your messages reminded me of the following: I am a single parent and when my kids were small we went through a very difficult period during which I worried I was so distracted by a family crisis that I might be missing their issues and needs. I also suspected my kids might try to hide problems from me not wanting to make the situation more difficult. I decided to put another set of eyes on them to be sure nothing was getting missed. We were living far away from family at the time, so I had them meet each week with a child psychologist to talk about how they were doing. Her help was valuable in keeping our family dynamic healthy and positive. Had I been living closer to family I might have organized the “extra eyes” differently, but the arrangement left me somewhat less worried that I would not notice their needs.
Reaching out to a mentoring organization is a great idea. I hope you are able to find the support you need, it sounds like there is a good circle of help reaching out to you.
Regards, MaryMay 13, 2017 at 12:58 am #94414
Gail…….you are not alone in this. Anyone out there in the cholangiocarcinoma world relating to Gail’s family situation? If so, please contact her.
MarionMay 12, 2017 at 11:02 pm #94413
I’m hopeful that we can get some temporary measure of relief…and hopefully we will see some of his strength return. its not surprising to me that he’s got almost no energy today given the chemo earlier this week, but it’s tough to see him slowing down even more. I was really hoping to get to the mother’s day breakfast this morning at school with the kids, but he was feeling dizzy so those plans went back to the drawing board.
I think overall it’s the concept that we will just keep doing this treatment regimen until it either stops working or his body can no longer tolerate has us both in a funk. I reached out to the 4th angel foundation today and they are doing some research to try to connect me with a family in similar circumstances.
The support I get from the people on this site is helpful beyond words. I wish you all a peaceful weekend!
GailMay 11, 2017 at 3:50 am #94412
Gail…..I haven’t given up hope that your husband can improve. He had plenty of complications and came through, hence I wish for him to regain his strengths and the possibility of a clinical trail can become a reality. You so much deserve a break.
Hugs and love
Marion.May 10, 2017 at 5:09 pm #94411lcr1965Member
You can try to see someone at Fox Chase. They have clinical trials for cholangio patients. My guess is that they have the same trials as Penn but you never know.. My wife met with a doctor at Fox Chase who recommended a trial based on a mutation she has. We’re still going to meet with a doctor at Penn later this month for another opinion. Both places had a clinical trials phone number and we were able to find out if there were any possible trials even before we met with a doctor.May 10, 2017 at 4:48 am #94410spokanemomParticipant
I know the recommendation not to pursue clinical trials was not the news you were hoping to hear, and I agree with Marion that the oncologist needs to be specific about why he would not be considered for a trial. Have you met with a different oncologist ever and if so can you meet with them again? Now might be the time to seek a second/third opinion. Can you get to any of the major cancer centers listed at http://cholangiocarcinoma.org/for-patients/major-cancer-centers/ ?
We are here for you, so don’t feel bad about venting. This is the place to vent! I so appreciate your willingness to share your journey. It makes me feel less alone.
VictoriaMay 9, 2017 at 3:58 pm #94409
thanks everyone for your support.
My husband is still receiving gem/cis which has been effective when he has been well enough to receive treatment. The Foundation One report showed the following alterations:
1) KRAS G12D – we understand there has been some work by Steve Rosenberg at the NIH using T cell immunotherapy with this alteration and are definitely interested in pursuing this as an option.
2) MYC – it appears there may be some clinical trials for this but its unclear
The doctors at Penn have otherwise been very aggressive in their approach and treatment, so I was a bit surprised by their recommendation to hold off on meeting about any potential trials. However, I know that with the cancer in the lymph nodes and bones it’s more than a mountain to climb.
Where would you suggest we reach out to next?
GailMay 9, 2017 at 4:33 am #94408
momof3: is your husband still receiving gem/cis? Is it possible to obtain another opinion from a physician treating a high volume of cholangiocarcinoma patients?
Also, it would help for the oncologist to explain to you:
Is your husband’s performance status:
Ambulatory and capable of all selfcare but unable to carry out any work activities; up and about more than 50% of waking hours? If that is the case, what are the reasons for denying him access to a clinical trial?
Which molecular alterations had been identified?
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