willow
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Bless you, both! Kris.. Never feel you’re on a soap box. This is valuable and desperately needed info that will help many. Its a gift, not a lecture. Thank you!
I didn’t realize that Medicare might pay for this when I was hiring home health aids (cna’s) through a private agency and paying for it with his long term care insurance. This was for my dad before we moved him to an assisted living facility. Maybe he didn’t qualify fir coverage at the time because he didn’t really need skilled nursing till the very end when medical issues were combined with dementia. For a long time he just needed supervision and help with activities of daily living. In the other hand, later..insurance did help When he had an infection like cellulitis. After taking him to the Dr, for diagnosis, home health was ordered. A home health nurse came to assess the healing and change dressings. Later, when he had a suprapubic catheter, they came to check that too, but it wasn’t daily and the visits were brief and focused just on the task at hand, not overall care. Still, it was a a godsend compared to dragging him out to the Dr office for follow ups.
Hello,
I’m not sure but my guess is that giving your already weakened husband chemo would be worse for his health than not. It is toxic and could cause more misery. Also, there is no guarantee chemo will help him, even if he was healthy enough to have it. Chemo for CC is really hit-and-miss (and when it works it often stops working after a matter of months due to mutation of the cancer or tolerance to the drug with this kind of cancer which is why we are pushing hard for new therapies. I hope this helps.
Bless you and your husband.Thanks, Percy for reviewing this easier to understand website and posting the higlighted topics. Even for non scientists it’s fairly easy to understand the general idea.
I want to point out that not only does the dr have to request the genetic testing of a sample of tumor (it’s not routine) but this also means an actual sample if tissue is necessary, either from biopsy or tissue removed during surgery (whether its exploratory, debulking or potentially curative surgery). So ASK your Doctor. I would be hesitant, due to spreading cancer, to have a repeated extra biopsy just to get sample for genetic testing if a diagnostic one was already taken. Maybe they can preserve original tissue sample for later genetic testing?Looking forward to meeting Percy, Marion, Jason and Andrea at the GI ASCO this week in San Francisco!
Willowthis is a better page for same website:
http://www.n-of-one.com/resources/molecular-targeted-therapy.php
Here’s the website with more information that I found useful for the general public, explaining the difference between chemo and molecular targeted therapies and giving examples of some of the drugs being used today.
http://www.n-of-one.com/resources/targeted-cancer-care.php
Mary,
Thank you for sharing this news… The fabulous news and the details about ascites. This helps more than you know.
That is SUCH good news about the gem Cis working! Also very happy to hear you’re taking a tiny break to vacation.. Enjoy yourself!Diana,
You will need outside help in order to keep your health, job and sanity. I hired a companion and often extra caregivers to supervise my Dad in addition to moving him to assisted living near me. It is expensive though..sometimes my sisters would come from out of town to relieve me when I went on vacation. He had long term care insurance which covered a majority of the assisted living. This wasn’t a nursing home so nursing home or in home nurse may be more appropriate. Also, consider hospice. When we finally signed up for hospice I was really worn down form frequent trips to the ER which were painful and scary for my Dad (who had dementia too). In CA, if prognosis is approx 6 months or less, you can qualify. People often wait too long to take advantage if the wonderful support hospice can provide. If he gets better, you can simply “graduate out of hospice”. It made a world of difference as they brought everything to him, including ordering his meds and handling every little medical crisis. Medicare covered all expenses, down to the depends and meds and medical equipment which was a huge help. I was happy to learn that they they do allow some curative treatments such as antibiotics for infection (oral and topical, not IV) in addition to other symptom management. They do not provide simple supervision though, and it sounds like your husband will need that 24/7. Even with my father in a dementia unit in assisted living and having hospice care and a helper companion, it was pretty intense (I have kids and a pt job too). It was also an honor, I must add. Decisions for the care of your dear husband is so personal so I don’t presume to know what is best in your situation, but I just wanted to share how I literally used a village to give Dad the most care and love during this stage of his life. And I managed to keep my sanity most of the time. With help, I was able to spend more time simply enjoying his company and loving him.
January,
I don’t know if the anticipation before a scan gets any easier. This is a milestone filled with hope. Wishing your daughter the best… A clean scan.
WillowWell, my sister got the terrible news that the lesion on her upper right abdomen is a CC met (per the biopsy results). It is not flat after all, but is a lump under skin where entry for biopsies were 1.5 years ago. Why does it seem like she has to have this rare occurrence of needle tract seeding with the rare ICC? I’m so sad and worried about her and yet don’t want to show it. We are discouraged. we go to chemo tomorrow and it’s the first time I can go with her for this. A CT is sched for next Monday to see if current chemo is working.
