peony
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Hi Marion. It’s been a difficult few days. One of the hospice nurses suggested we switch to methadone. They have seen great success with the drug so we agreed to give it a try since dans pain has been increasing expoentially. However it’s been a tough transition and this is the first time I’ve seen him in such excruciating pain. Hospice has been great in responding and addressing each issue.
I have good days and bad days but am doing my best to keep it together.
As far as the reimbursement for meds, we’ve been lucky that insurance is picking up almost everything. The zadroga act inclusion of cancer will allow us to initiate a claim to the 2.7 billion dollars allotted to the vast amount of people affected by 9/11.
Thanks for asking after us. All my best to you Marion.
Laurie
I attached the link from the paper with a list of all the cancers that are now covered.
Laurie
Hi Anna, my husband was dx oct 2010 atnthe age of 47 with intrahepatic cc , inoperable. His first treatment was
Gemzar and cisplantin for 8 months. The tumors shrunk.
He then switched to Gemzar and oxaliplatin and avastan for 6 months.In jan 2012 he stopped chemo since he could no longer tolerate the side effects.
But remained on avastan only for 4 months.
He also had radiation for mets in his spine. And continues to get Zomeda.In June he started a 6 week clinical trial in NYC. After 8 weeks the results were inconclusive.
The original rumors have not had any significant growth, however he has additional mets to the spine and involvement in the Omentum.
I wish you and your mom all the best.
Thank you for your well wishes ladies.
Marion, when Dan was first admitted they started him on golytly and ducalox and a suppository. I was surprised it worked since nothing we had done at home did the trick. But I think the large quantity of the golytly was the magic . For his pain they gave him a shot of dylaudin (sp?) and fentynal IV. By the time they discharged him they converted the pain meds to 150 mcg fetanyl patch and 40 mg of oxycodone 4x per day as needed. And 400mg ibproven .(I can’t spell).
He’s still in some pain but not as bad as before he went in. Also bloating, gas and heartburn are still an issue. But we have gas x and a host of other OTC drugs for that.
I wonder what Others are taking for pain?
Anyway, it’s good to have him home. I only wish I could be with him all day. I feel guilty when I’m working. Hospice will be coming this week so at least someone will be at our house a few hours a week. And of course I will take FML when I need to.
Hugs to all.
Laurie
Hi Melissa , my husband takes zofran for nausea. It works really well for him but you can only take 1 every 12 hours.
Hi bluebird. My husband was on oxali also and got sores. The only thing that gave him relieve was the biotene, which Marion mentioned. He uses both the mouthwash and toothpaste. I hope it works for him. Peony
Pam, I was on zoloft several years ago.
The doc gave me a starter back and built up the dosage very slowly.
I believe I started on 10 mg for 7 days , then 25mg for 2 weeks etc…finally up to 50mg.
I was very nausous in the beginning and felt weird but that eventually wore off and the medication worked really well and got me thru a very tough time in my life.
Getting off the medication was the same slow process.
Don’t give up on taking them too soon. It could be just what you need.
Since my husband was diagnosed I’ve been on Lexapro. that works also.
Peony
There are no words to express the sadness I feel over the loss of the strong, vibrant, caring and altruistic person that Kim was.
My heart goes out to her girls, and I pray that they will find peace and heal over time.
Hi,
I’m so sad and sorry for your loss. It seems so unfair.
My husband is only 48 and we’ve been fighting this awful disease since 10/2010. I cant begin to imagine my life without him.
I can’t offer any advise, but please know that people on this website understand and care deeply.
Visit and vent as often as you can, it may bring you some peace and comfort.
Hugs and prayers
PeonyHi Lisa, Sorry to hear about your husbands diagnosis. My husband was initially diagnosed by Dr. Kruger and Dr. Churkie(wrong spelling) at NYPres in NYC with ICC. But they are surgeons and surgery wasn’t an option for us.. So we met with Dr. Poppa for initial treatment and she worked closely with a local oncologist in our home town so he wouldn’t have to go into NYC daily. The oncologists should work with someone locally for you as well.
He started with Gemzar/cis, then a few other combinations.
Zofran works great. Constipation is an awful side effect of both the treatment and pain killers. We found the best relieve was a combo of prune juice, coffee and milk of magnesia (ugh!) BUT it works.Keep the faith
Peony
Thank you Percy.
Thanks Nancy.
Yes he has had radiation to his spine in 2 areas and it helped for awhile but he now has multiple rib fractures and additional tumors in the omentum.hope you are coping well and I’m happy to see your still on the website.
Peony
Hi Nancy,
sorry to hear about your recurrence. I have read your posts and noticed you’d seen Dr. Bruckner. It’s great to hear that you didn’t have many side effects. It gives me hope for my husband if he decided to try chemo again, which he does not want to do.
We also saw Myron Schwartz regarding surgery but opted not to have it done.
Best of luck with your scan, you’ll be in my prayers as well.
Peony
Hi Susan,
My husband was diagnosed in October 2010 Intrahepatic CC with mets to spine, lung and liver. He was on Gemzar/Cisplatin for awhile then Gem/Oxaliplatin and finally just Avastin.
He stopped chemo in January 2012 and stopped the Avastin 2 months ago. His reaction to the chemo was severe and he was sick all the time.
I would like Dan to try Dr. Bruckners low dose chemo as he insists he can control the side effects.
We’re still in negotiations.I understand how you feel about giving up too soon, I have mixed feelings as well but it’s was horrible to see my husband suffer so much. He is better at handling the pain then the sickness. He is now able to get up and go to work everyday, even if its only for 1/2 day.
I’m skeptical about the trial but praying for the best.
Percy – thank you for the link.
Peony
