And so my Journey Begins . . .
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Mr. Zilla your recovery seems to be progressing normally at a regular pace and from your description you are eating a little more and feeling better. Wonderful. It is a slow process but as long as you are seeing improvements it is going in the right direction. Your white blood cell count should come back up to acceptable levels soon. I am so glad for you. Congrats once again.
Take Care God Bless-Russ
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5 Mar 2023 Update: Good news - Did my blood work Friday and my white blood cell count has gone from 1.8 to 7.3 in two weeks. Bad news - Got a sinus infection from the grandkids a few days ago. Not much fun right now. Other than that things had been going great. I'm eating foods with no problems (swallowing is fine) though sticking to basics until sense of taste comes totally back, about 30% of the mouth right now. So it's eggs, pasta, and fish for the most part. The other 70% is ok cause it tastes neutral rather than horrible which is a step up. Saving all the good stuff until I get more back and I do have a list! All the phlegm had gone until the sinuses kicked up. Using the Navage and mucinex dm on it. Next appt is on the 13th with the radiologist . . . .
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13 Mar 2023 Update: Had my first follow up Radiologist Onc visit since radiation ended (Jan 24th) today. My usual rad onc, Dr B, was on vacation with his kids so I had it with another rad onc, Dr G. In the "It's a Small World" category turns out Dr G was the guy that did my testicular cancer stuff back in Apr of 2001!! Anyways, they (Rad Onc and Rad Nurse) are very happy with how it's going. I'm eating solid foods (rotisserie chicken, pulled pork, cheeseburgers, etc) with no swallowing problems or pain. Can't ask to be doing better. That sinus infection did kick my **** though. Still getting over it, mostly a little dry cough at night just to screw up sleep now. Going to make my first follow up with the ENT tomorrow as he becomes the most important doctor after the PET scan is done on Apr 13th. Overall no complaints, it's gone very well. Anyone have any questions please ask or message me.
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It seems you are through the worst and are on the good side and recovered well, eating well, great report from your doctors and they feel good about your situation. It appears you came through this very well with very minor after-effects. You are Truly Blessed. You got to the light at the end of the tunnel.
My congratulations and good wishes to you and I celebrate with you and may God continue to Bless you.
Wishing You the Best
Take Care, God Bless-Russ
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21 Apr 2023 Update: NED, no physical evidence of the disease upon examination or imaging test after treatments !!! Had my PET scan last week and my Oncologist and ENT visits today. All gone according to the PET scan, no FDG activity at all in the two treated areas (Left lymph node and BoT) or anywhere for that matter. PET scan was done from skull base to mid thigh. Oncologist was very happy though she couldn't resist taking a small dig at me for not getting the feeding tube prior to treatment. Blood work is doing very well. She said no more PET scans which sounded kinda weird but . . . ENT was extremely happy. Don't think I'd ever seen him smile never mind grin ear to ear like he'd won the lottery. ENT did the throat scope thru the nose and said everything looked great. Small amount of phlegm back there. I finally started to experience some minor dry mouth at back of throat. Only two real side effects so far, small problem with hearing and very mild neuropathy bottom of my feet when I go for a walk. Sense of taste has not progressed anymore than last time which sucks. Sleeping is now good. Now it's just see the ENT every six weeks for the first year post treatment/diagnosis . . . .
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Fantastic news! My first post treatment PET is in July and I’m hoping for the same outcome.
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Hello and YE-HAH Mr. Zilla. It sure seems they looked, and looked, and looked some more and they just can't seem to say anything but NED. What sweet letters they are that are music to our ears. Looking back at the start of this getting to where you are now seemed like a journey, and it is, but here you are finished and NED. Congratulations on your finishing treatment and getting through that difficult time and getting your pronouncement of NED. All tests and pronouncements on your health are good and you got through with a minimum of after-effects. Hopefully, the ones affected such as taste, hearing, and neuropathy improve over the months ahead.
As far as no more PET scans, yes you get to a point where they are not done anymore but they will probably be having you get Cat Scans occasionally. I get a Cat Scan with Contrast of the H&N area and one of the chest once a year. I understand they do one of the chest because if H&N cancer travels and shows up somewhere else the first place it travels to is the lungs.
So now go and bask in the light of being free from cancer once again.
You exemplify our battle cry here on CSN H&N NEGU (Never Ever Give Up)
Praise be to God
Take Care, God Bless-Russ
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Had another EnT visit and one with my Radiologist. Radiologist and I agreed that seeing him was on a "as needed basis" now. Intend to do that with my Oncologist too next month when I visit her. Only the EnT really does anything that could be considered checking my throat as he sticks that camera up my nose and down my throat for 30+ seconds. The Oncologist and Radiologist just say "good job, keep it up" so I can't see paying them the co-pay for that. EnT and Radiologist both cleared me for an occasional shot of whiskey lol! My Radiologist is big about get cancer done and then start living again. Other than that nothing has really changed. Taste maybe a little, hearing is good but sensitive to loud noise, still a little neuropathy on bottom of feet but it's getting less. I will say stay on top of your stretches for neck and jaw. I am doing so well I slacked off on that and could really tell after a few weeks especially when eating. Stick to your plan even when feeling fine. Back on my supplements and will start lifting again next week. As well as I did it's still amazing how much your strength and stanima take a hit. That's about it for this update . . . .
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Shots, Shots, Shots! 😆 Cheers!
Good to hear and good gouge on the 'hey, good job' visits costing copay with no added benefit...
I just finished treatment yesterday, so I'll keep this in mind in the coming months. Especially since radiology has my first follow-up as a Telehealth appointment 🙄
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Congrats again Mr. Zilla. Usually, your care providers like chemo and radiation drop off but your front-line guy to keep a watch on things is your ENT. Usually, your visits taper off going to the ENT from every 3 months the first year and stretching out to every 6 months or once a year for up to 5 years and most people are released after that. All that visit frequency depends on each individual case.
Usually, you are considered cured after 5 years post-treatment but I was right at the 5-year mark when I got my second cancer so you never know. But it's like any other illness you can't live in fear of it although there is always that little thought in the back of your mind and that's a good place for it.
Congrats.
Take care, God Bless-Russ
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Glad to read this update. I’m at the occasional beer stage, not quite ready for the hard stuff yet.
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20230721 Update: The week in review.
Monday: Had CT Scan for possible nodule in left lung detected from prior PET Scan
Tuesday: Dentist – Had X-rays and cleaning. Everything is fine and looks like it was prior to all this crap. No problems.
Friday (today): Visit with Oncologist. CT scan shows nothing in lungs, so clear there. Blood work looking good. Everything above min limits except for WBC count but it’s pretty close and improving over time. Visits moved to every six months now as no need to do every 2 – 3 months.
Overall: EnT, Radiologist, and Oncologist all say I’m doing outstanding (knock on wood). I feel really good. Eating/drinking a lot of proteins. Only complaint left is taste, still only about 45% back and coming slowly. Saliva will thicken up quick if I try bread or sweets which leads to lack of taste. I figure it’ll take a year + to get back to where it was. Maintaining my weight where I want, 160 – 165lbs. Other than that I couldn’t ask for better. As always happy to answer anyone’s questions . . . .
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Well, Zilla, a super congrats your way.
I am so glad for you that everything has come together into a beautiful recovery after fighting the beast and finishing treatment. It will take time for some things to improve more such as you said your taste is at about 45%.
Congrats on going through treatment and finishing, it's a tough job, and then recovery from treatment and that is even tougher but you made it through and see the final stretch in sight. Congrats on a clear scan, congrats on the clear dental visit, may things stay stable for you now and improve where you need it.
Zilla you have been Blessed Greatly and I pray it will continue.
I celebrate with you and wish you the best.
Take Care, God Bless-Russ
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Godzilla, thanks for sharing your story. Your progress updates are useful to follow and provide an uplifting perspective. What lotions did you use on your neck during treatment? I saw you mentioned Regenecare, but was that just after treatment? Also, did you ever experience any jitters/shakes randomly throughout treatment? My father is 2.5 weeks in and is starting to experience some of these symptoms. Again, thanks for sharing!
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After I got the individual rad treatments I went straight home and put an aloe vera lotion on my neck right away, it was only a 15 minute drive home for me luckily. After a couple of hours I put CeraVe or a coconut oil lotion on my neck, switched back and forth. My throat got the standard 1st and 2nd degree (couple of spots) burns after rads treatment completed but it all healed up in about a week thanx to Regenecare samples the rad clinic gave me for the burns. That stuff worked great for me. The rad people also recommended Jeans Cream (another free sample) but I never really used it, didn't like it but most people do. It's available on Amazon.
I never had the shakes but I bet that's due to the chemo. Is he doing cisplatin or carboplatin? For his neck though stretching is just as important. I constantly stretched my neck and jaw. You want to stay ahead of the game if at all possible.
Keep in mind I don't know your dads diagnosis, age, pre-existing conditions, or treatment plan. My whole deal was a little different than most peoples on here. No pre-existing medical problems, upon recommendation from my EnT, Oncologist, and Radiologist no surgery prior to treatment other than biopsy. Cisplatin vs carboplatin chemo and I also fasted before/after chemo sessions, and a few other minor things. I learned a lot from everyone here and tailored my plan for myself accordingly. But everyone’s journey is different and you'll all get through it. his board and its members are a great resource. Any more questions please don't hesitate to ask.
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Hi Godzilla,
I have been following your story/treatment since my husband was recently diagnosed with similar cancer. Our doctors are saying no surgery (not even neck dissection) as it's Stage I. Saying we'll get a "cure" after just radiation and chemo treatment (7 weeks rads and either 3 or 7 Cisplatin based on dosage and we choose).
Just curious as to what "type" of radiation you had (for us our only choice is VMAT, not Proton). Where you were treated did they even have Proton radiation? So far, where we are, not many even have it yet. Our hospital will be getting it in 2025.
Thanks for answering and so glad you got through this and posted your journey for the rest of us.
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I did do VMAT and was very happy with results. I was in good enough shape where my radiologist dosed me with 2.2 greys rather than standard 2 greys because he thought I could take it. Turned out he was right. Basically with the VMAT machine I was on it did three passes per session. First pass was to make sure it was aimed correctly where the radiologist team wanted it. Passes two and three were the actual radiation itself. About halfway through treament they did another CT scan on my tumor because it had shrunk so much. They re-did my radiation plan, happens in about 50% of patients my radiologist said.
Proton is available in my area in one place but it would have required more travel time for me.
For chemo my Oncologist did three large doses, about 220 mils per shot average based on height/weight. She said that was the "standard" when I asked why three vs five. I didn't like that answer but stood out to me for one reason that I read on the CSN board. This woman said the three large doses were bad enough, she cringed at the thought of having to do it once a week like most people even with the smaller dose. She liked that she had a couple weeks recovery time between chemo treamants and I have to agree with her logic. My chemo fasting plan really reduced any chemo side effects for me. I virtually had none other than my blood work taking a pounding which is normal. The three doses vs five actually worked great for my chemo fasting plan too. I don't know what your Oncologist has planned for you but I did NOT tell mine that I was fasting for chemo, she'd have had a fit. She was upset enough that I did not get a feeding tube for my treatments lol . . .
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Godzilla, thanks for your speedy reply. On the rads I specifically asked how much rad to “where” and rad onc said 70 Gy to BOT and 50 Gy to 2 lymph nodes on left side and 50 Gy on right side as no swollen lymph nodes on that side. Also surgeon said less on the right as no lymph nodes on right. So now I’m really confused by the terminology he used. Also we were being told about the choice between 3 or 7 chemo based solely on the 3 times really having a bad side effect on my husband’s hearing. Made it sound like it could damage high frequency hearing that even hearing aids couldn’t fix. I’ll have to find out more how you fasted. My husband is in good shape other than he has well controlled diabetes and he’s already fasted for many of his tests. They also didn’t share “how much” Cisplatin he’d get per dose so this all helps SO very much, as we need to ask. I totally get your rationale now on why 3 does as for him it would be 3 over 7 weeks which seems more doable as you said.
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