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#199969 03-23-2020 12:49 PM
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ConnieT Offline OP
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next monday, a port will be inserted so that he can administer the chemo at home for 5 days a week. he did not come home from this appointment feeling positive..of course, he can't stand the doc he had to go back to so not surprising. With all this crazy stuff going on, life is much more difficult to say the least. I will drop him off to get the port and wait at home to come pick him up. He doesn't want me in the hospital which is fine as I do not want to be a carrier of the virus. So far, we have had zero positive for the virus in our county. I have only been out 1 time in 11 days. It took him awhile to take it seriously but he finally stopped going to the store for food every day.

Thankful the oncologist comes to our town once a week as he is located in an area with many who are ill with covid 19.


,,,,,and life goes on.


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
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ConnieT Offline OP
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first day...thought I was going punch his lights out! he was hyperactive and bouncing off the walls. he said he slept for the first time in a long time so the chemo must be working.

second day....started out hyper but seems to be sleeping a lot more. Hyper sensitive to smells. Says the Lysol wipes are so strong and making him sick. I don't know if that's a chemo thing or not. I can't smell them when I walk into the room.

He returns the backpack/machine on Friday. Then a 2 week vacation before another 5 day round of Keytruda and whatever chemo they are giving him.

I forget the rest of the world is hunkered down too. Guess I"m not missing out on too much while being hyper vigilant about germs.


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
Joined: Oct 2012
Posts: 1,254
Likes: 2
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When John had chemo, they gave him Benadryl prior, to stave off any allergies. That might have been the reason for your hubby’s very good sleep.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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ConnieT Offline OP
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that's possible. He was so glad to not have all the pain in his face which has kept him from sleeping for a couple of months now. But today...it's 9:30 and he hasn't even gotten up to take his dog out yet. I think the tiredness of the chemo and/or Keytruda has kicked in. He went from an 11 in energy on Tuesday and started really slowing down yesterday and seems to be out of it today.


Last edited by ConnieT; 04-02-2020 07:28 AM.

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
Joined: Oct 2020
Posts: 1
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Posts: 1
Hi guys,

I hope you are well and safe. I have a question for you, if you don't mind. I'm searching for more information about immunotherapy, I don't know anyone that actually had an experience with it. The doctor suggested to my mother to be treated with immunotherapy rather than chemotherapy. I am trying to find as much as I can on the internet, but I would like to hear some personal experiences, too.

I found this, and this, and I realy hope that this could be a really god stuff. Do you have any other resource to recomend?

Thanks in advance,
Marie

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Hi Marie!

I’m sorry you are in a position to research chemo and immunotherapy for your mother! I’m assuming she has oral cancer? Unless maybe OCF came up in one of your general Google searches? Our website is one of the busiest medical or cancer type sites with receiving more online “hits” than many bigger more we’ll known organizations. Hundreds of thousands of people read thru our forum and browse thru our main OCF site every day... quite an accomplishment for our tiny nonprofit organization!

Unfortunately our site does not have the things you’re looking for. OCF is a group of oral cancer (OC) patients/survivors and caregivers. We are not medical professionals! We simply share what we’ve experienced first hand ourselves with others. For OC, it’s not at all like one of the bigger more well known types of cancer which gets all the research money and grants for studies about things like what you’re asking about. OC is an “orphan” cancer!!! It lacks the awareness and attention of scientists and the general public. It’s one of the most deadly cancers yet it’s relatively unknown unlike “the big ones” lung, pancreatic or breast cancers to name a few.

I’m sorry we’re unable to help you. Best wishes with your continued search!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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If you would please post some additional information about what immunotherapy she is being put on, and for what cancer, I may be able to help you some. The few that have gone all the way through FDA approvals, are actually used in multiple cancers (immune checkpoint inhibitors for instance like the ones you are seeing advertised on TV Keytruda and Optivo) so I may be of some help to you. Many more that involve different mechanisms for enhancing the immune response are still in clinical trials, but re available to patients if they are being treated at a participating cancer center in the trial. I will watch to see if you come back, and will do what I can to point you in the right direction if I cannot help you.

I sit on the immunotherapeutics oversite committee at the National Cancer Institute. That doesn't mean I have all the answers, just that I am a little more informed than others about what is out there and what is in the pipeline. If it gets too far away from H&N cancers, I may be of less help as that is my focus.


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.
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These articles you have posted are news stories about research that is ongoing, that isn't the same as information about something that could actually be used in a patient today. There are hundreds of ideas about ways to interfere with the cascade of events in a cell that leads to malignancy. About 25 or so are in active clinical trials in humans, and finally out of the realm of animal testing. But the bench of immunotherapy tools that are through the clinical trial phase is still not very deep.

And we are still trying to understand what happens when we use them in some combination to see if multiple mechanisms of impact can be combined. The risk in all this is that the immune system is a very powerful part of us. It is capable of causing life altering and even life ending reactions in us on its own when it gets out of hand.

Guillain-Barre syndrome is a disease for instance that occurs mostly in young girls, in which they loose the use of their lower limbs, and end up wheelchair bound. It is idiopathic, meaning we don't know why it starts to occur. But we do know what is happening. The patients own immune system starts to attack the peripheral nerves and destroys their ability to send the appropriate signals to the muscles involved. This can happen in some patients using one of the immune checkpoint inhibitor immunotherapy drugs used in head and neck; patients can spontaneously develop Guillain-Barre. Because immune check point inhibitors take down the barriers that keep the immune system in control (so that it is strong and can attack via certain pathways the cancers) it starts attacking everything. While this is a relatively rare level three adverse event, it does occur. So there is still, even in the monoclonal antibodies that we use, lots of unknowns when it comes to any individual patients response.

The media is littered with lots of hopeful articles about things that might be a workable idea. The issue is that the testing involved is lengthy and has a dedicated path it must follow to ensure that when we use it in humans and not mice.... it does what it is supposed to do, nothing else.


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.

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