› Forums › General Melanoma Community › Post-hospitalization options for advanced melanoma patients
- This topic has 3 replies, 3 voices, and was last updated 7 years, 2 months ago by
Ashley09.
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- April 1, 2018 at 12:52 am
Hi everyone,
My father was diagnosed at the beginning of March with stage four melanoma with brain metastases. It's been a heartbreaking month, as you can imagine. He was admitted to the hospital pretty much the moment he was diagnosed, due to brain swelling and the need for immediate radiation treatment. He's also begun the targeted therapy treatment since he is BRAF positive.
Now that he has been there for nearly a month, the hospital is looking to discharge him. He is stll incredibly weak, dealing with expressive aphasia (meaning he can't speak or communicate what he needs), can't get up to use the restroom, etc. Basically, he's bedridden with very few options to let people know what he needs.
My family has been looking into our options–namely, nursing homes and home care. Home care seems nearly impossible at the moment with the level of care and attention he requires. In all my research, it seems that the nursing facilities in commuting distance for my mom don't have much information on how they help cancer patients. It has also been extremely challenging to find a nursing home willing to administer the targeted therapy medication my dad needs (they are taken orally, but due to his difficulty swallowing, they have been putting them through a feeding tube).
So…any insight? Has anyone else had difficulty finding a nursing facility that is prepared to deal with the extent of care and the kind of treatment melanoma patients require? We are in the Southern California area and welcome any suggestions!
Thanks so much.
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- April 2, 2018 at 1:43 am
Hi. I'm so sorry that you are having to go through all of this. 🙁 I have a few questions about your Dad. How old is he, and is he on Medicare. If he is on Medicare, he can be moved to a Rehab facility in order to get stronger and Medicare will pay for the first 30 days. My only concern there would be the feeding tube, although I believed that some skilled rehab have that capability. I can't give you specifics as I'm not in the Southern California area, and my dad did not need a feeding tube when in rehab.
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- April 3, 2018 at 2:08 am
Hi Ashley,
My family and I just went through the same situation with my brother Jered who is stage iv. While my brother was bouncing back from being close to death in the ICU for 20 days, his patient advocate started asking us to visit nearby LTACHs so he could be transferred. We did, and we were unable to find a facility that would administer chemo medications, which his Zelboraf/Mekinist targeted therapies are considered.
We felt desperate and scared as to what we could do for him much like you are feeling about your father. My insight after all of this is that hospitals do not like dealing with stage iv melanoma patients, they feel it's a hopeless situation. My brother's ICU nurses and most specialists didn't know about the amazing effects new drugs, especially the targeted therapies, have for melanoma sufferers.
After telling them about the LTACHs not willing to give him his chemo pills, they moved on to suggesting hospice. After discussing our frustrations and fears with Jered's oncologists, he promised us Jered would not be discharged from the hospital until he was ready to go to a rehabilitation facility or home. As the previous person replied, rehabilitation hospitals will give chemo drugs and are set up to deal with more complicated patients like your father.
Jered stayed in the hospital for a total 50 days, in that time I heard of patients being there for 4 months at a time when they couldn't go anywhere else. Fight for your father to remain where he is so his targeted therapy can do its thing. We had to deal with doctors and nurses asking us daily what we were going to do, trying to push us to take him elsewhere; had we taken him to an LTACH and not started and continued with his targeted therapies, I truly believe my brother would not be here. He stayed at the hospital until he learned to swallow his pills and was able to have his trach removed. He was then sent to a HealthSouth rehabilitation hospital.
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