Post treatment PET scan turns up new cancer cells in my lungs
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So happy!
Hello Chill8r ,
I am so glad to hear that you can now be approved and get into the immunotherapy clinical trial . That is really outstanding news!!
it is a problem sometimes meeting all the requirement for a Trial you want. I know this from my boyfriend Randal's experiences. He passed away in May from Stage IV HNSCC, but there were a couple different times that he had tried to get into certain specific trials --- anything to get him off the chemotherapy ! He missed one deadline, because he was in the hospital ( and someone else got his place). The last Chemotherapy he was on, was Oh so harsh and debilitating. It sapped him of all quality of life. Chill, he fought 2 different Stage IV cancers for 9 years with No break. No respite.
he so wanted into a clinical trial, anything to get him off the chemo. However, earlier he did a complete course of both Keytruda, and then Opdivo as well. They were each given solo, not combined with anything else.
I'm excited that you have the chance that this clinical trial provides.
way to go !
Crystal
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Just wanted to report that
Just wanted to report that one week after beginning the trial I am doing GREAT! I've had no side effects from the Keytruda or the injections YET, aside from slight soreness at the point of injection. (Knock wood). After 5 months I'm continuing to recover from the 7 weeks of radiation and chemo. My ability to swallow is 80% back, my taste is maybe 70% back and my energy level is nearly 100% back. My shoulder issues are lagging, I still can't really raise my right arm much above shoulder level but I'm not in any pain and am on mo medications other than the trial drugs.
Obviously I don’t know if the combo immunotherapy is working but at least mentally this is allowing me to get on with my life. I'm trying to operate as if I were on high blood pressure treatment, IOW, you take the medications but don't think about your condition all of the time. Taking it day by day but operating as if I have some time left.
I would like to offer kudo's to the Dr's and staffs at MUSC in Charleston and at UNC hospital in Chapel Hill, they've all been appropriately empathetic and supportIve. Even appropriately sorrowful. And I appreciate this community a ton!
Carpe Diem!!
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Thank You For
The update on your situation.
Great that you have no side effects from the Keutruda.
I would say you are doing pretty well at 80% of your swallow back, 70% of taste back, and energy level at nearly 100% congratulations.
You can deal with the shoulder issue later.
I am glad that this combo of immunotherapy is available and certainly hope it's doing its job.
It has at least taken a mental load off and you can just trust it is working and move on with your life and look ahead.
I like your angle on the whole situation of where you are at and with the treatment and dealing with it like high blood pressure treatment, that
you take the meds to help you control the situation and now "Back to Livin".
OK Chill-Wishing You The Best-Take Care-God Bless-Russ0 -
Chillg8r
Your story has really hit home to me. Thus far I have been very fortunate as I qualified for a trial on the front end where I first had radical neck dissection and a few weeks later I received 2 low doses of chemo and I had radiation 2x per day for 2weeks straight. During my initial and 90 day post Pet Scans, they have been watching a nodule on my lung. They told me the first place my cancer would spread is into the lung and that they don't believe it is cancer but I keep getting it checked. My next scan is in October and I am pretty anxious for it. I hope your trial works and please keep us updated. It is amazing how much we care for oneanother even though we have never met other than via this forum....
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Remington25 said:
Chillg8r
Your story has really hit home to me. Thus far I have been very fortunate as I qualified for a trial on the front end where I first had radical neck dissection and a few weeks later I received 2 low doses of chemo and I had radiation 2x per day for 2weeks straight. During my initial and 90 day post Pet Scans, they have been watching a nodule on my lung. They told me the first place my cancer would spread is into the lung and that they don't believe it is cancer but I keep getting it checked. My next scan is in October and I am pretty anxious for it. I hope your trial works and please keep us updated. It is amazing how much we care for oneanother even though we have never met other than via this forum....
There are some more of us on here with nodules that are being watched.
You would probably be surprised how many.
Not necessarily actively in my case, I think they are just looked at in my regular scans I get as follow-ups.
As of my last situation and hospital stay and following scans, I have a small nodule on my liver and one on one of my lungs.
I believe as long as they stay the same and don't grow, or grow very little nothing will be done.
My sister had one on her lung years ago and it was watched for a number of years and then finally started growing and she
underwent treatments with the cyberknife which eradicated it.Take Care-God Bless-Russ
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I’ve now been receiving immunotherapy treatment for 8 months on the clinical trial and so far so great. The volume of cancer Seems to be either stable or slightly less on all of my scans including my last scan that was taken last week. The equally good news is that outside of me now having to take thyroid medicine every day I’ve experienced virtually no meaningful side effects. What that has meant is that I have continued to heal from the radiation and chemo and so I’m now at a point where life has become, pretty much, normal. Sure, I still can’t taste things fully and my mouth is very dry, but I can eat anything I want and feel pretty much the way I did before treatment.
I realize that it’s likely that at some point the scans will not look good but rather than dwelling on that I’m choosing to back burner my thoughts about my condition. We’re just enjoying our days while we can, all the while hoping that I can out run this thing until another treatment is developed. The truth is that while I don’t know how long I’ve got, does anyone really know that?
For those that are engaged in the heat of battle I’ll continue to pull for you, I’m sure I will be your situation again at some point. Let’s all keep controlling our thoughts on what we’re going through and live our lives on purpose.
Peace ✌🏼
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Chill congrats on getting your white blood cell count up, seems the vitamin C did the trick. I am glad for you that you got the approval for a clinical trial and agree hopefully it is the right one to win the victory for you.
Wishing You the Best
Take care God Bless-Russ
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Great news! Enjoy every day.
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Time for an update, and this time its a very positive update! I “may” be cancer free thanks to the immunotherapy treatments!
To recap: Ive been getting my blood tested every 6 months by a Naveris that has developed a test called NavDX that can detect how much cancer is in my body, specifically HPV Head and neck cancer. I was tested before radiation and chemo and my score was 288. Then, after r&c my levels went down to 84. Of course we were hoping for zero at that point but it had metastasized to my lungs by then which showed up on the PET Scan and was confirmed by this blood test. Then, 6 months into the trial we tested again and it had gone down to 11! VERY encouraging, because my incurable cancer was responding to treatment and becoming manageable. Three weeks ago we had an other test done and, unpredictably, it came back ZERO! 👏🏼 According to Naveris and my doctor, there is a better than 95% chance that the result is accurate!!!!
I’m going to continue getting the treatments every 3 weeks for they rest of the trial, 1 more year, but my prognosis is VERY different than it was and I couldn't be more grateful.
This group has been very helpful wrt keeping my head straight, I appreciate you all for that….I know that nothing is for sure, but isnt that the case for everyone, especially for everyone who’s is 65 yers old? Carpe Diem!!!
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Another positive update for those whom this may give hope.
I continued in the trial getting a Pembro cocktail for another year and continued to get negative NavDx test results. In June of last year I withdrew from the trial, only a couple of months before it was scheduled to be complete, and now a year and a half after my first negative test Ive continued to get negative tests every 12 weeks.
Obviously I think all of us have learned that tomorrow is not promised to anyone but I’ll continue to keep a positive spirit and enjoy each day as best I can. I can also say that most of my side effects are completely gone although bananas and red wine still taste way too sweet! So grapes and tequila for me!
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Howdy stranger, glad to hear all’s going well for you. I noticed that the trial you were on has gone to stage 3, that’s great news. Things look very promising.
As for me I had my 6 monthly scope done and all’s ok even though I’ve had a sore throat for the last couple of months. The ENT doc said it’s from radiation change. I reckon it’s from drying out at night when asleep. I also have a very very slight ear pain now and then but it doesn’t bother me. I suppose it’s just another late effect from radiation.
My 6 monthly pet/ct scan is scheduled for the beginning of next month and I’m hoping for a good result. If all clear that will be 34 months since a single met turned up in my right lung.
How about those Aussie cricketers, conquering all before them. Bloody good hey.
Stay well
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So glad you’re doing well. Have you tried using mouth tape? I started using it because my snoring was keeping my wife up but it has the added benefit of me not getting such a dry mouth at night because I’m breathing thru my nose. I’m also sleeping better. Just a thought! https://somnifix.com/
Let’s keep healing!!!
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Actually I bought some for my wife as she snores like a trooper. She eventually got a cpap machine, silence is bliss.
As for trying it myself the only hair I have on my face now after treatment is my moustache and I’m a bit weary of sticking anything to it. I’ll give it a go anyway a see what happens. My wife reckons I look like a walrus anyway as the hair is thicker and longer towards the philtrum ( the groove under your nose). She loves me😁
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I'm going through the same thing cancer came back after 26 months in lunge just did first treatment at ohsu oregon health since doing immunotherapy akl 148 trial and chemo pump have mouth sores after port flush if you have pdl1 over 20 still curable my pdl is 0 in one biopsy and 10 on another
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