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CSN Outage 12/5/19
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Prayer Request
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Sep 05, 2018 - 12:17 pm
Today my husband Jim is having his Petscan. I ask that you please shoot up a quick prayer that the surgeon is willing to do a staged liver resection now. 30 mets, I know it's a long shot but after 8 months of chemo it's hard not to have just a slight bit o hope for good news! We will get the results next week and I will post just as soon as I know. Thanks all for your support! I don't know how I would have been able to handle all this had it not been for such a wonderful group of people! |
Joined: Aug 2018
Joshua 1:9
Just finished praying for you and your husband. There's always hope.
mountainhiker
Joined: Dec 2017
Done. And so sorry, 30 seems
Done. And so sorry, 30 seems like so many more than I can imagine
Joined: Jul 2017
Done
Praying and hoping for positive news for your husband.
Joined: Feb 2009
Prayers
Prayers sent. I'm always saying prayers for this board. I'm praying your husband gets some promising news. God is Hope. There is always hope.
Kim
Joined: Mar 2017
Prayers work..
Praying for your husband and you.
May your PET scan scan show no further spread.
Joined: Jul 2016
Prayers sent.
Prayers sent.
Joined: Jan 2018
Thanks Everyone!
We need all the prayers we can get and a little extra doen't hurt! Somewhere in his life something must have gone terribly wrong as he has lost his faith in God, long before his diagnosis. I told him to try and find it again, but in the meantime I have enough for both of us. I let him know that you all were praying for him he gave me a big smile and said to thank each of you. Every day I pray for each of you and I thank God for helping me find you. It's so sad that Cancer is what brought us together I wish you didn't have it, I wish we had met traveling or as foodies anything but this nightmare of a rollercoater. You will never know how much I admire and love you all. God Bless!
Joined: May 2013
Hoping you get
good news from this scan next week!!!!!
Joined: Dec 2016
Prayers coming your way
Praying your husband will receive great news and end results will be complete
healing and long life.
Joined: Feb 2009
You're Not Alone
Just remember that here you are never alone. It might not be that your husband relies on God or has faith, but you do, and some of us here do as well. There are many on here, including myself, that pray everyday for this board and their families. This board is made for all. You are doing a wonderful service to your husband by coming on this board to help him. You are a wonderful wife and caregiver. We are always here for you.
Kim
Joined: May 2018
Re
That doc is good and he specializes in complex surgeries. They have a nice floor where they will take care of your hubby. Pain control will be done thru port and he will be pressing the button in a device that will send medication in his blood stream. After that they will try pain pills. Will be doing breathing exersices even at night. Need to walk asap he can. I walked the same day for 30 yards and the nurse was holding me. On day 2 All by myself around a nursing station. Took a shower by myself a quick one in day 3. No energy and fatigue for exactly 1 month. Could walk, go to a supermarket but was tired. Driving resumed 10 days after the surgery. The energy returned to normal exactly 1 month after the surgery. All right lobe 60 percent was removed. Buy protein shakes. Meg can order ensure drinks while in a hospital but they need an order. Had sore throat after after a tube but they have stuff for throat sgain Meg can put an order. Liver grew back in about 1 month to a normal size. Butt.
Joined: Jan 2018
PET scan results
Sent a prayer for your husband and you.
Joined: Apr 2018
Praying that you husband gets
Praying that you husband gets the best news possible!
Joined: Jan 2018
Monday Blues
We managed to have a fun packed weekend! My Birthday was Saturday so we celebrated the whole weekend long, dinner & drinks with our friends, boating, fishing. He had so much energy with this little chemo break, for a while there I acutally forgot about all our woes. It was really a delight seeing him be his old pre-cancer self again! We are focused on our upcoming vacation now to keep our minds off the results. Knowing that the tumor board meets today is torture, they are talking about the results and the next plan of action and we are in the dark for a few more days. Okay I am going back to look at pictures of the Cenote in Mexico where we will soon be! Thank you all for your prayers. I will post back on Wednesday as soon we get home from the oncologist office....until then no more thinking about it
Joined: May 2013
I have been checking
I hope you got good answers today! Happy belated birthday!
Joined: Jul 2017
Never lose hope
Praying for great results. Your post gives me hope as I went from 3 to 17 mets in a short time this year. I dread my next scan, that necessary evil.
So glad you could enjoy your birthday and that your hubby had a truly GOOD day. We need tobe so thankful for the good days as they are all gifts.
Joined: Jan 2018
Your journey has been so
Your journey has been so tough. But when I look at your picture, I see one strong woman. You have been through so much already, but I know in my heart that you will get through this. Your next scan will be good, I just know it will be. You are a fighter, you are strong. I honestly, would not have prevailed like you and I truly admire you for that. 17 mets is a lot, but it is beatable. My husband started with 30, a lot of the little ones disappeared as of May, the largest ones shrank incredibly. If he can do it, you can too! As always you are in my prayers!
Joined: Jan 2018
Update
Thank you all for your prayers and for thinking of us. We got the results and.....I am just as stressed! The large tumor is still very active And as well as his liver. The surgeon however did not say no to surgery though. She asked that our oncologist run an MRI with contrast to see if there is enough shrinkage to safely rescect. What really irks me is this surgeon is not a heptic surgeron just a colorectal surgeon. She will refuse to do surgery if the liver has too much involovment, but how is she to know as the liver is NOT her specialty. In the meantime, they are stopping the infussion of Flofri after only 22 treatments and is putting him on a maintenace pill for now. There is not much tissue left in storage, but they are taking it to run genetic testing to hopefully find a more targeted therapy.
When I pressed more about the HAI pump, she said she is very familiar with it and does not recommend it to her patients as she believes the numbers are not accurate. HUH? Well that statement has made my husband lose interest in seeking the oppinion from the Dr I had set up for a second opinnion! I spoke up, I had enough I told her though I love her very much and feel that she is a wonderful doctor that he needs more aggressive treatment and that it is not within our city. She of course in turn said we needed to stay locally, as its best for our family and his work. She would refer us to Moffit if we wanted. I told her to wait. My husband will only go for one more opinion. His job is everything. He is so afraid to lose it. His health insurance is through them as well as his only life insurance for me and the boys. I really want to scream. His job is literally going to be the death of him!
So not knowing what to do, I will stand still right now as I have been taught. I can not make any rash decissions. I need to look into Moffiitt, Mayo (jacksonville) and Shands hospitals and see which has the most aggressive heptic surgeon there is.... Until then wait for yet another test. At leaast his disease is stable! So that I shall celebrate!
Again, thanks all for your continued support!
Joined: Aug 2018
With all due respect
I don't think your husband's colorectal surgeon should be giving advice regarding liver surgery. See the article below which I have posted before (full disclosure - it was written by my surgeon and oncologist):
https://link.springer.com/article/10.1245/s10434-015-4456-9
My opinion, for what it's worth, is that your husband needs to get to MSK asap.
I heard the same negative talk from several oncologists locally/regionally (Philly area) that there was nothing that could be done for me except chemo which may keep me around 2 more years. First meeting at MSK and I was told they were going to do their best to cure me which included a liver resection that I was told couldn't be done by other doctors. And I too heard the nonsense talk about the HAI pump not being effective, outdated technology, blah, blah, blah. Whatever, Dr. Kemeny's track record speaks for itself.
I honestly believe that some doctors' egos are so big that they just can't bring themselves to admit that someone else may actuall know more than they do.
It's good that you like your husband's doctor, but it doesn't sound like she has his best interests in mind.
mountainhiker
Joined: Jan 2018
I agree
I don't think it's her ego as much as her inexperience and she is willing to refer us elsewhere. Upon leaving I told her he is going to be that miracle patient! I would love for him to goto MSK, but he is stubborn about his stupid job. A job that would replace him in 2 seconds flat! We used to have a branch MD anderson here in Orlando, but they broke ties with the hospital. I am hoping to find an agressive sugeon. nearby as that is all he is willing to go to. What really worries me is the stupid Colorectal Surgeon. SHE is the one who is playing God. To speak from a heptic point view is highly negligible. Once the MRI is done and the Genetic testing we are most certainlly going elsewhere.
Thank you so much for the article, I will send the link to my husband now.
Joined: Aug 2018
Men are like that
I had similar feelings at the beginning about missing time from work, but it finally hit me that the job doesn't matter if I'm not around. Didn't hurt that my pastor beat it into my head that my wife and 3 kids need me way more than they need to collect on a life insurance policy. If you're close with your pastor, maybe he can help motivate your husband.
Getting to a cancer center with great doctors who deal with this stuff all the time can make all the difference.
I'm typically a very reserved person - stay to myself for the most part. But since receiving this diagnosis I'm talking to anyone willing to listen about getting checked and if they already have a diagnosis what I've done to get where I am today (and yes, I know it could come back any time but after being told I had 2 years at most I'm thrilled to be 1 1/2 years out, feeling great and cancer free). I hope I'm not overstepping any boundaries, but if your husband would like to talk to another man in a similar situation I would be happy to do that over e-mail or phone.
mountainhiker
Joined: Feb 2009
A Second Opinion
All I'm thinking is a second opinion. Just think about it and make him think about it as well. I'm not sure how far Moffitt is from you but a job is not worth his life. He needs to like about getting the best possible treatment.
Kim
Joined: May 2013
I agree she should not be talking about surgery
that’s not her field and honestly every liver surgeon will give different answers depending on experience and skill. Your husband reminds me of mine, work is every deciding factor in the choices he makes. I hope you are able to get a good second opinion.
Joined: Jan 2018
I just read up about her!
OH HELL NO! She is only 40 years old, just finished another fellowship. I have nothing wrong with young doctors, but this one no way! 40 years old!?!!?! Yeah, not enough experience under her belt to be playing God let alone to even just give us any thoughts outside of her training. Funny thing is this young 'en has a wait list until November to get in! Oh my, I feel horribe for all the patients she see's who has advanced disease like my husband! I wonder how many are really surgical and she turns away. Now I rather not wonder, it will depress me too much!
Joined: Mar 2017
Advocate
Twinzma,
Your husband is in good hands with you as his advocate! Your husband sounds like mine in that to some degree he just puts his head down and tries to plow through this without looking around, researching or asking questions. This is where we come in! This researching, asking, questioning the doctors can be a confusing thing sometimes and I often wonder what happens to the patients who do not have someone in their corner questioning and researching.
Keep up the good work!
Joined: Jul 2017
I think you're doing best
I think you're doing best being a caregiver. I don't have any input on the treatments but I'm continuing to pray and wishing you and your husband well. (And yeah, find another surgeon--a good liver surgeon).