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Posts (23)

2 hours ago · Living with Neuropathy - Welcome to the group in Neuropathy

My husband was prescribed one of those compounds. Insurance wouldn’t pay for it and it was $60 for an ounce. He used it once.

Sun, Oct 1 11:01pm · Esophageal cancer reoccurring in Cancer

Does he have a PEG tube? My husband refused a PEG until he reached 116 pounds. Weight is an ally in this fight.

Mon, Sep 25 10:34am · opdivo in Lung Cancer

There is Gabriel House in Jacksonville: We stayed there when my husband had a kidney transplant in 2012. At that time it was $35/night.

Thu, Sep 14 2:35pm · Keytruda Treatment in Cancer

My husband has squamous cell carcinoma (spindle cell) which originated on his scalp. He has had numerous surgeries and radiations on his head. He began Erbitux in October. The May 2016 PET scan shows NO cancer on his head, but three areas of concern in his torso. Mayo doctor mentioned in March that we might try immunotherapy “if it comes to that.”

My husband had a transplanted kidney, which was rejected in March, because the immuno-suppressant drugs to keep the kidney were suspended in the summer of 2016. They were feeding the cancer.

Keytruda was not an option before, but with the kidney no longer a consideration, Keytruda started in May 2017. Mayo doctor said that Keytruda would target the kidney and take it out. Shortly after starting Keytruda, the remainder of his transplanted kidney function ceased. We take this to mean the Keytruda is doing exactly what it was designed to do – to help the immune system to find the bad guys and take them out.

He had numerous left-over wounds from surgeries before the Keytruda. They have healed quickly since it started.

His main complaint is fatigue, but it is hard to tell how much is related to dialysis and how much is related to Keytruda. He has an aversion to food smells – particularly meat. Sometimes it makes him sick. Again, hard to define the origin of that.

Wed, Sep 6 1:21pm · Esophageal cancer reoccurring in Cancer

Tumor boards are for doctors from different specialties to have a frank discussion on where the disease stands, what are the options, order of options, etc. Not for the layman.

Mon, Sep 4 1:04pm · Feeding tube removal in Cancer

@kimf, @geezer, @undiagnosedsickgirl, @mroreo126, @franknick, @ej9718, @rsinger22, @kathyzendner, @mswanda, @dbennett, @kirsty281, @maggee, @dicknlou, @lee28 and @lisab

Wondering if any of you have tried blenderized foods in tube feeding? My husband is on dialysis and has cancer. The doctor prescribed Nepro for dialysis patients – 4x per day. Husband is against using anything other than the canned formula. He fears clogging the tube. I say he needs SOME real food.

Sun, Sep 3 10:16pm · Proton Therapy travel and recommendation in Cancer

We live 6 hours away from Mayo Jacksonville. In summer of 2015, my husband was diagnosed with Squamous Cell Carcinoma (spindle) on his head. The immune-suppressants he was given for his kidney transplant allowed the cancer to flourish. He has undergone 30 treatments two different times at Mayo (Fall 2015 & Spring 2016). Each time the cancer would pop up somewhere else on his head, but never where it had been irradiated.

Both times my husband went on short term disability, we relocated to Jacksonville, and we rented an apartment. It was very stressful in that we not only had to deal with the illness, we were all alone. If my mother had not been able to stay at our house and take care of our two dogs it would have been even more stressful. It was also expensive.

Before the first treatment I told the radiation oncologist at Mayo that Baptist Medical Center in Pensacola (40 miles away from us) had the same equipment. His response was, “Yes, but do they know how to use it?” At that time, we were looking for a cure and would have gone to any lengths to get it. If we could have it done locally, how would we know that the outcome would be the same? All we knew was that Mayo was the best option we had before us.

In January 2017, my husband began his third round (30) of radiation – at a local oncology center. This time it was palliative.

Both Hematology and Radiation Oncology at Mayo worked with our local doctors to plan the treatment. The goal was to get rid of two painful tumors in his neck and that was accomplished. The terminal prognosis probably played into Mayo’s willingness to work with outside doctors. The difference in the treatment between locally and Mayo was certainly apparent. It was like getting from point A to point B – you can get there in a BMW or a Ford.

I can only recommend that you explore ALL options available.

Sun, Sep 3 7:09pm · Proton Therapy travel and recommendation in Cancer

Jacksonville has an on-campus facility for people who are awaiting transplants, post transplant, chemo and other immuno-compromised conditions. The name of it is Gabriel House. We stayed there for my husband’s kidney transplant. It is a beautiful facility. You might inquire if Minnesota has a place like that. In 2012, it was $35/night.

The communal nature of the Gabriel House was not my cup of tea as a caregiver. Food is forbidden in the rooms, as well as tv and radio. The object of this is to force you to interact with other residents.