My marathon of dr visits, PET/CT, and sonogram starts on Monday.
8/5 Opthomologist. I don't expect any changes. Going to ask about a colored contact lens for my blind eye that is a different color, but it get better thsn it eas, but my pupil is still white. I would probably have to see an eye doctor for any contact lens lol. Just learned I can't see 3D movies when going to see Superman, which is no big deal, but good to know. You need both eyes to see in 3D. No wonder I thought the 3D TV's were junk, and never seemed to work in the stores.
8/7 Nephrologist. So far, creatine level is going back to my baseline, which is not that good, 2.9, but hopefully stays off any therapy, dialysis. I'm stage 4 chronic kidney disease, GFR is 22, close to stage 5, and going to ask about that.
8/14 PET/CT probaby my 13th. This one is a milestone. If clear, this will be my first clear scan, after any post treatment scans, which mostly are all are clear anyway, in 4 years since I always had recurrences before that.
8/15 ENT visit. I'll get my PET scan results. Actually, I'll pick up my own copy at the testing facility to review before my appointment. Need some quiet time for that, maybe quick thinking based on results. If the results are good, I'm going to ask about my nose, saddle nose, boxers node, which looks broken from the carlidge loss or breakdown at the bridge of the nose from lack of blood flow, when I was hospitlized from chemo. While I'm at it, I want to ask about my pec flap, which left me with a lopsided chest, big scar. I wonder if they do chest augmentation for men? I'm getting vain lol. Then my teeth, which all need to be removed, I know, due to radiation, althought it is the dental oncologist, Maxio something lol, who is in the eame dept, but at least get the ball rolling with my ENT
8/19 RO, MO follow-up on PET results, blood test. Last TSH was out of range. I'll See what happens.
8/20 Sonogram of the Kidney area from the kiddy stone.
8/27 Urologist results of sonogram, PSA test
8/29 Local MO blood tests review, PET review. I doubt I need a shot of procrit. I can feel its not low, and last test the hemaglobin was in the 10 range.
you really have the sheer tenacity to live and thrive like few others. When I first arrived, your posts scared the crap out of me but now I find great inspiration in your will to march forward with such a tremendous load of adversity. You really are a brave and strong soul. The best outcomes to you Paul. don
Thanks Don. Few things can stop me now, except cancer lol. I'm back in the gym getting stronger each day. Walking in the park, not far, but baby steps. I couldn't walk for almost a year, now walking 200 yards. Couldn't lift a spoon to feed myself, and now lifting weights, and holding back on the amount really, so I don't pull any muscles, but going to burst out in a few weeks. My weight was down to 130lbs from chemo, and now I'm 195lbs. I just hope for no more set backs.
Wow Paul, what a line-up of medical attention you have ahead this month! We are all pulling for you to have a clean scan, if ever a guy has earned one it's you.
Thank you Mamacita. This has been pretty much my schedule, even more sometimes, every month for the past 3.9 years. I'm in pretty good hands though.
Hoping for the best Paul! Let us know how it goes. Great to hear you have been lifting and getting out. I need to get back to the gym. Still down 40+lbs of muscle since pre tx.
Please let us know how it goes. You have been through so much, I am hoping for good outcomes in every area for you.
Thanks Andrew, Gloria. Feels good to get back in the gym, although, I've been on and off since April. The weight will come back, muscle has memory. I lost 100 lbs for Tx, but gained 50 back on purpose with my seefood diet lol. Hoping for continued NED also. I don't know what more can be thrown at me, but life is full of surprises.
Two dr visits down. Saw my Opthomologist who did the routine eye dilation. I asked about a colored contact lens, and said to hold off for now. The white pupil is from a cataract developing, but is not going to do surgery since I'm blind in the eye anyway.
Nephrologist is happy with my blood work the past few months, and creatinine, GFR is pretty stable, and that's why he is not concerned even though I'm early stage 4 CkD. Said I should not go any higher in weight, 200lbs now, since that will put a strain on the kidneys. Said to just continue what I'm doing, but gave me Bp medication since it has been steadily high, probably from the acute kidney failure a few months ago.
I developed an abscess in my gum the other night from irritating my tooth. My neck, under chin swelled up to. Went to the doctor, and was given antibiotics. I hope this doesn't effect the PET scan, but may with the swelling. Can't chew too many foods now.
Low carb diet today for PET scan tomorrow. Started off with scrabbled egg for breakfast, coffee, for lunch ordering out Chinese, egg drop soup, shrimp with bean sprouts, and for dinner a hamburger, no bun, and some type of vegetable, maybe creamed spinach. No food, water or meds after midnight.
So your instructions are to cut the water; Interesting - my center said water was OK.
Don, so many places have different instructions, as do the different staff members. I was just called, finally lol, for pre-treatmnt instructions, no carbs, which is different than low carbs, which others have instructed, I can drink water (my CT for stomach was no water) in fact, at another location I have to drink 16 ounces of water an hour before arriving, no gum chewing, no exercise, which I didn't do since yesterday. No one mentions brushing teeth or rinsing with mouth wash, but doing so may cause uptake from movement, and coat the mouth with sugar? Oh, and this new place likes to do CT contrast, bedsides the FDG-18 nuclear glucose tracer, but I can't do the CT contrast due to my kidneys, so they give me the barium swallow stuff, which I get to choose which flavor lol. This is probably my 13th scan. Maybe this time I'll be lucky.
It seems the only constants are low/no carbs, water OK, and to not exert oneself too much just before the scan. Good luck with your scan. I'm about two weeks out so just in a holding pattern. don
Thanks. You sort of get used to them, but anxiety is still there, and I often reflect on the past, previous tests, results, which were not always favorable in my case, and this one would be a milestone as far as being NED longer than 6 months.
Lol..holding area. I'm getting ready to take off! Best of luck with yours. Most post treatments scans are clear, in the high 90% range, if that helps.
Thinking of you Paul. Waiting for you to post great results. This time Matey.
Tammy
May your carbs be low and your uptake lower.
Positive thoughts and prayers Paul! May Mr. NED be waiting to meet you!
"T"
The anticipation continues...
Had my PET/CT scan yesterday, and had to lie about drinking some water in the morning, and was asked several times if I ate or drank anything, oh well.
Picked up my written report today from the diagnostic center, couldn't wait for the disc copy, and saw there may be some concern in level III. Met with my ENT next, who can access the scan, and then said he called the radiologist, and then the pathologist to see if a FNAB can be done under sonogram guidance, being there is a small spot in level III, where cancer was previously, which can't be ascertained what it is. If it's cancer, we'll deal with it, and was caught early, if not, I just went through some extra trouble, which I agree with. I doubt it is a reactive lymph node, being I had three neck dissections in this area. and the last cancer there was roaming, free cancer or extra-capsular spread, for lack of a better description, meaning cancer was floating around. Tomorrow I'll find out when my FNAB is scheduled, probably next week sometime.
Findings: The patient is status post revision of left neck dissection and resection of a suspicious mass in the left supraclavical fossa with placement of a pectoralis major flap reconstruction. Since 2/19/13 examination, there is interval visualization of a small lymph node along the superior deep aspect of the flap, immeditately lateral to the common carotid artery on images 76-78 measuring 7x3mm in axial cross-section. It is associated with focal metabolic activity, maximum SUV range up to 4.5
Impression: Since the prior PET/CT, there is interval visuslization of a hypermetabolic left level III lymph node along the superior derp margin of the reconstruction flap, immediatly adjacent to the carotid artery. The degree of associated metabolic activity relative to the size of this lymph node may take at least noteworthy. Distinguishing between a reactive node and a possible site of a new nodal metastic disease is limited based on current imaging. Sonographic correlation is recommended as the next step in evaluation.
To be continued....
Paul,
Sorry to hear they found something. Happy to hear they found something early. It is very small; I'm surprised they picked up a 3mm nodule and the radiologist also comments about the SUV given the size. Do small nodes have limited SUV values since they are just plain smaller or does the SUV calculation include node size?
Anyway, you're still treading water my friend, could be better but could be lots worse. Hang in there, don
Good luck with the fnab. Hope it turns out to just be an infection or inflamation from the tons of treatment yohuhave been through. Let us know how it goes.
If I remember correctly 4.5 isn't a terribly high suv right? Thats a good thing as well
Anything above 2.0 SUV uptake is suspicious for cancer. Not sure about size=uptake value, but may as they may take in more glucose due their size. PET's are so sensitive. I heard them being able to detect up to 5mm, while a CT, MRI it may be 1cm, and that's why I would rather have a PET/CT, a Sonogram is better than all three in the cervical neck, and had similar size detected before by PET that wound up being cancerous with uptake of 2.3, 2.5. I just hope the pathologist can get a sample, and doubt it's a nodule, but I have several other pathologists I dealt with elsewhere. I'm never short of doctors lol.
FNAB scheduled on Aug 29th. Follow-up with the ENT on Septebcer 12th. Had to cancel my RO and MO appt next week to reschedule after the 29th.
Oh Paul, bugger.
More waiting.
Tammy
Waiting is the worst! My radiation oncologist follow-up is September 9th. I have to see how I'm goi g to sneek out my report, being this place is unfamiliar territory. I'll just ask or go to medical records.
Im very sorry the report came back with some suspicions. Hoping it turns out to be just some scar tissue.
Hopefully it's an unhappy scar? Healing area? Hugs and hope its nothing. You deserve that at this point.
Thanks. Hopefully it's one of the lesser scenarios, scar tissue, inflammation, necrotic tissue. Had a lot done to this area, plus alloderm to protect the carotid, and that was removed, so who knows, but it wasn't there in February, at least not picked up. I do have a tooth/gum infection, which I'm taking antibiotics for, and had swelled up my neck last week, but is a concern being I had cancer in level III, three times.
Well, I had my biopsy on August 29th. Was told prior with a sonogram, and always had with ultrasound? Find out they are both the same, but technically different, which I'm not going to try and figure out. After the pathologist took the sample, I think there were two nodes, she said my doctor will have the results the next day. I was usually told something on the spot from my prior 6 FNAB's elsewhere, like it is recurrent cancer, it's the same as before and interesting lol, I asked if it was "interesting?" The Pathologist kind of hesitated, saying she had to look at it further being reconstruction is difficult to tell, and my doctor will have the report the next day, which was Friday. Being a holiday weekend, I didn't inquire by telephone, not that I was told to do that, until Tuesday. The administrate aide said the nurse has to give me that info, and would call me back. No one called back after a reminder several hours later, so I made a trip to the hospital yesterday, Wednesday, and met with the Physician Assistant, who said all the results are not back yet from further testing, my ENT was not in, and hopefully when I see my radiation oncologist on Monday, the 9th, they will release the test results to him instead of me waiting until Thursday the 12th when I follow-up with the ENT, and will have some treatment plan in place, corrected herself, probably after my eyes popped open lol, and said or maybe it's not needed.
Before that I ran into the SLP and exchanged greetings, and asked me what I was there for? I said to pick up some biopsy test results, and she asked me if the doctor looked at then yet, and said I didn't know. She then said they are not going to give them to you like that, and hand you a piece of paper to figure out, but said I have no problem with that and can handle it.
I really like getting the results back before seeing the doctor for piece of mind, know what direction I'm going in, and if needed, able to ask the right questions, with a little research. So now I have to wait until Monday for the surprise results. Waiting is the worst.
<<<PAUL>>> That's a looooong wait for results from 8/27. It sounds as though all are following through, but still makes me wonder if any of them have ever had to wait for this kind of news.
You have four days to wait, you know the drill: Live 'em large, make 'em count. There's a country song we need to mangle -- "dance like no one's looking (at your cells under a microscope), love like you've never been hurt (in the name of healing)..."
Hugs and Love,
Mama
Thank you Mama. Made me smile!
Going to see my radiation and medical oncologist today, so hopefully I get the biopsy results back. The radiation oncologist oversee's the whole cancer program, so I may not have to wait until Thursday to see the ENT to get them.
Positive thoughts and prayers Paul... you are one patient man for sure!
Good luck, Paul! It has been a long wait, over now. :-) don
Ditto, It's time for some good news. Best wishes.
And double ditto - best wishes, fingers crossed, knocking on wood positive thoughts, eating Lucky Charms etc. You have been a great front runner for me and are very much appreciated.
The lymph node came back positive for metastatic squamous cell carcinoma. The oncologist doesn't recommend chemo. Onto the the Radiation Oncologist said, being it's small to be aggressive, so is recommending a neck dissection, and radiation during surgery while the neck is exposed, with IORT, high dose Intraoperative radiation treatment, that I had last year. The tumor board will discuss this tomorrow if surgery is possible, and if radiation can be done being it's close to the carotid artery, but he may be able to protect that. I will probably know on Thursday when I see the ENT. I don't think it's a lymph node. Same thing happened last year, thought it was a lymph, but was roaming cancer.
I see on the pathology report the results came back on the 30th.
Paul Im very sorry you are going thru yet another recurrence!
Im wishing you all the very best with everything you are facing.
Just replied to your Facebook post. I will be praying for you to get a successful treatment. Dang, it's about time don't you think? God Bless.
Julieann
Really sorry to hear Paul. I'm sure the collective wisdom of the tumor board will lay out all the options for you and you will have a clear new direction soon. Don
So sick of all of this! We are here for you Paul as you have been here for us. Hope they figure it out quickly and get going with tx.
Kathy
I'm sorry paul, I'm sorry you have to go through all this. Know that you are being thought of by many. My prayers are with you.
Thank you everyone. It may seem strange, but I have some relief with finally knowing the results, and know what direction I'm going in, and can direct all my energies to that instead of waiting, fearing the unknown. Thanks again.
As I have said to you Paul , you are a Warrior. I know you will face this head on. I also know that you will really do your research and have a pretty good idea of what treatment path to head down when you meet the team again.
Just put your Warrior hat on tight and run down that path.
We are all behind you, cheering you on.
In my thoughts Paul,
Tammy
It just sucks Paul. Nothing I can say other the that.
Here for anything for you always!
Oh (((PAUL)))
Dammit! That's just ridiculous! I pray that all goes smoothly and they can knock this down for you, ONCE AND FOR ALL. LIKE THEY MEAN IT.
Mama
Son of a B&%^$!!!
Damn... cancer sucks! Sorry to hear this Paul.
Positive thoughts and prayers
"T"
Paul in my thoughts and prayers brother. This is news we all fear. If there is anything I can do.....................please ask. Time to go back into the ring.
Paul, as with everyone, I'm thinking of you and wishing the best of a bad situation.
Im so sorry to hear this Paul. Fortunately you appear to be able to handle whatever your docs throw at you so I am sure you will handle the next step in treatment. You are in my thoughts.
Paul, what's the next step for you?
I'm going in today to see my ENT. My RO said on Monday, my case will be presented at the tumor board meeting the next day, Tuesday, which he probably chairs or co-chairs, too see if the surgeon can do surgery, and he radiation, and sounds like he does. RO wants to be aggressive, rather than conservative, and recommends a radical neck dissection, removal of tumor, anthing else, and do high dose Intraoperative radiation therapy during surgery, which is equivalent to 3 or 4 times in Gy in the given with IORT, usually, 10-20Gy, which would be like 30-80Gy. I doubt I would get more EBRT later on. I also have an appointment with the oral surgeon, same department, for my teeth, but that was scheduled before the current issue, so I don't know what, and when anything will be done. Chemo doc said no chemo, so will see if anything changed.
Hope everything is well with yourself.
They are proceeding with treatment plan, which is good news. Surgery will be in a few weeks. My teeth have to wait. Oral surgeon said I can't do any HBO before that, too dangerous, to have my teeth extracted.
Fabulous news Paul. Really pleased that this will happen for you.
Yes, the teeth will have to wait.
Remember that we were told that HBO accelerates the growth of any tumour cells. So yes, not a good idea at the moment.
Start cooking and eating heaps of delicious foods.
Tammy
Thanks Tammy. The HBO I can and can't understand due to reading, hearing conflicting reports. They use HBO to treat hypoxia, so one is not chemo or radio resistant, but is not too beneficial. They also found that tumors thrive in low oxygen from angeogenisis (Sp) when they take new blood supply to grow. Anyway, I was too tired to even ask lol, and just do what the doctor says. I think I'll stick to cooking lol.
My surgery date is on October 16th. Will be in the hospital a few days after. They are trying to move it to the 9th, but not only have to schedule the ENT, but the Radiation Oncologist, and Physicist too, who are part of the radiation team during surgery.
I guess I'll be moving this to "currently in treatment." My surgery, radiation will be on October 16th. I Will need HBO sometime after surgery, have oral surgery for teeth extractions. Oral surgeon looked in my mouth, and said, "what a mess." He also asked me who did my rhinoplasty? I told him no one, looking surprised, and asked what happened then? I told him it's from chemo, and woke up one day in the hospital with the bridge of the nose collapsed. My ENT said it could be from the lack of blood flow to the cartilage causing the collapse. Dr. acknowledged this saying it's saddle nose, aka boxers nose. It's sort of funny strangers sometimes put up a boxers stance towards me lol. I have been through a lot of cancer battles, so I guess their right. I am a fighter.
You are indeed Paul. A Warrior.
Tammy
