Previous Thread
Next Thread
Print Thread
Joined: Dec 2019
Posts: 39
Contributing Member (25+ posts)
OP Offline
Contributing Member (25+ posts)

Joined: Dec 2019
Posts: 39
I have terminal cancer of the tongue (SCC, spread in nerves throughout jaw). I started my treatment at UCSF with a Head/Neck Oncologist with no communication skills whatsoever. It was also a long way from home to get treatment there, so I made an arrangement where the UCSF doctor would still be involved (I assumed that because he worked at UCSF he was better) and got a local oncologist to do treatments with closer to home.

The UCSF oncologist says you can only do cisplatin/taxol 8 times and then you have to switch. His next choice -I forgot the name, but it is an anti-epithelial cell drug that, in my research, doesn't work well on it's own. The local oncologist says he's never heard of a ceiling for cisplatin/taxol as long as bloodwork and side effects are not an issue and it seems to be working (my tumor is growing very slowly).

The local oncologist is an older guy, and not head/neck specific, so I'm just wondering how to make sure I'm getting the best care I can so I can live an active life for as long as possible. I'm about to be 46. I'm not ready to surrender to this stupid disease. Will bringing in a 3rd opinion just muddy the waters more? Once you get the opinion do you continue with that doctor or can that guide your current doctor? (Family wants me to go to University of Chicago, but I don't want to move back to IL.)

Any help is appreciated, TIA.

Joined: Dec 2020
Posts: 3
Member
Offline
Member

Joined: Dec 2020
Posts: 3
Hi there muddyb00ts -- I've been following your story and would like to share my family's experience, if it helps.

My dad is battling Stage 3 HPV-related throat/tonsil cancer, so I'm coming from the perspective of a family member who's not involved in his daily care (I'm in NC). He lives in Stuart, Florida. He was on a series of chemo and radiation. Primarily radiation. Tried some Erbitux (a type of chemo using monoclonal antibodies) but he had a severe allergic reaction and had to discontinue.

His local resources have been hit or miss and he's had to travel to bigger cities (U of Miami) when he's run into issues. A few months ago, he experienced major throat hemorrhaging, as the radiation had destroyed a lot of tissue in his throat and it had turned necrotic and was bleeding profusely. He was rushed to the ER, and his local ENT -- who had never dealt with his type of throat cancer (HPV), nor had dealt with necrosis of the throat -- suggested that he move into hospice, as he night be out of options. We were all frustrated with this doctor's mindset and his recommendation to just give up.

However, after traveling to U of Miami to see a highly experienced ENT who's very familiar with his type of cancer, he was directed to start hyperbaric oxygen therapy to help heal the necrotic tissues (and also help his ability to eat and talk -- both compromised). It is starting to help, although slowly.

I say all this to recommend that you find a head/neck-specific oncologist (or even an experienced ENT who's dealt with your type of cancer and can direct you to preferred oncologists). You need someone to believe that you can move forward and have a good quality of life for as long as possible -- and can develop a plan to help you do that.

I don't think it would hurt to meet with someone who's seen a ton of tongue cancers -- maybe at a larger city -- and they can consult with your local resources. Cancer still kills tons of people. There are no established ways to cure it - it's still a moving target. So, you have to work with people who have seen/done more in the cancer field.

Just my opinion as a family member, so take it with all the grains of salt. But I'm rooting for you - and I want you to find good information and a plan that makes you feel hopeful/strong.

Take care -- and please let us know how you're doing. Wishing you all the best!

Joined: Aug 2018
Posts: 342
Likes: 6
Platinum Member (300+ posts)
Offline
Platinum Member (300+ posts)

Joined: Aug 2018
Posts: 342
Likes: 6
my husband was given the news that not much could be done. He went to Mayo clinic and they had said they lost only 1 person with his cancer. He is 1.5 yrs out with his second bout and just got another clean bill of health. you never know. best wishes to you


Spouse of 58 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
1/2020 diagnosed with cancer near TMJ
4/2020 chemo 5 days every 2 weeks
6/2020 proton therapy
9/21/2020 cancer free
2 members like this: ChrisCQ, Jabberwocky
Joined: Dec 2020
Posts: 3
Member
Offline
Member

Joined: Dec 2020
Posts: 3
Hey all - I was curious about MuddyB00ts, so I clicked on her Facebook page (it's linked on her profile) and found out some sad news that she likely passed about a month and a 1/2 ago (March 9).

[img]https://www.facebook.com/erica.marshall[/img]

If the link does not work, here's what she said:

"An update : been hospitalized for over a week now. First it was complications from the feeding tube, now it's the fact that the tumor has grown big enough to block my airway since I lost consciousness and they had to put a breathing tube in.
After being given the options we're likely going to elect to try to pull the tube soon (under heavy sedation) and hope I pass as quickly and fast as possible yjju I le.
Feel free to DM me. I'm open to pretty much any question - no Shane did being curious! I'm on lots of great pain meds, so replies not guaranteed and not guaranteed to make sense.
I'll mask sure Clark (or someone) is responsible for posting that I've passed or changing my status so you know when there's no longer a point in reaching out (on this plane)."

Godspeed and peace to MuddyB00ts.

Joined: Sep 2019
Posts: 88
Likes: 12
Supporting Member (50+ posts)
Offline
Supporting Member (50+ posts)

Joined: Sep 2019
Posts: 88
Likes: 12
Prayers rip

1 member likes this: Jabberwocky
Joined: Mar 2002
Posts: 4,852
Likes: 24
OCF Founder
Patient Advocate (old timer, 2000 posts)
Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2002
Posts: 4,852
Likes: 24
It is always a sad day when we lose someone that we have come to know and care about.

Not knowing the medical specifics about this situation this comment may or may not apply. There is a wide quality bell curve of treatment facilities and individual practioners knowledge and skills. There is also a fair amount of peer reviewed published work on the impact of the choices made in treatment institutions looking at small regional hospitals vs larger teaching university hospitals and NCI designation comprehensive cancer centers. The better funded and staffed institutions have better long term outcomes for a variety of reasons. When talking to patients I understand the insurance coverage and choices they force upon us, as well as the financial constraints of any person or family. But I alway urge people not to let geography dictate their treatment choices, nor convenience. For the most part we get one chance to deal with our disease. It is imperative that patients make an informed choice when deciding on where their treatment take place, and not let the continence of a facility dictate that choice.

In the resources section of the OCF website, there is a link that says best hospitals. It takes people to an unbiased listing and rating of cancer hospitals in the US, done by US News every year. They have a very thorough means of rating the hospitals based on everything from end results, to modernness of equipment, education of clinical staff and much more. You can sort by rating, or by zip code. Understanding that not everyone can leave their insurance service area, it allows them to search locally, and for those that can afford to travel, nationally.

We do not get to make a lot of choices about our treatments. But choosing our team is the one thing that has significant impact that we can do.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
2 members like this: ChrisCQ, Jabberwocky

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,852
Newest Members
MLowery, Josie, marywendy, Teri, Jyn
12,942 Registered Users
Forum Statistics
Forums23
Topics18,079
Posts196,430
Members12,942
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2021 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5