Late Update--Just Info

wbcgaruss
wbcgaruss Member Posts: 2,465 Member
edited August 2020 in Head and Neck Cancer #1

OK, folks, I am doing a little catch up here but will try to make it as brief as possible.

Whoops looks like brief didn’t work this time if you get tired reading take a break or just skip it.

I apologize for waiting this long and making this so long-sorry.

Not in perfect order that’s for sure.

 

I had a CT scan with dye of my head and neck area on May 26th and after seeing the ENT from Hershey at the Lime Spring Outpatient Center off Rohrerstown road on June 22nd he wanted me also to get a CT Scan with dye of my chest just to be safe and that was done on June 24th. The results of these came back clear no problems thank God for that.

On Wednesday the 26th of August I had a PET scan with dye which is actually a whole body scan to make sure cancer is not anywhere else in your body, they call it eyes to thighs scan. I looked at the results and it looks unremarkable but will be calling this week to be sure and getting the doc to interpret it for me as there are some things I don’t understand in the explanation. Since I had not received a call I figure there was not anything there that alarmed the docs.

 

 

OK I finally got my feeding tube removed August 4th.

I had to go to Hershey to have it out but luckily they were allowing me to take one guest and they had reinstated valet parking which made things much easier.

Years ago when I had my first one out the guy pulled straight out and it pulled on my insides it seemed and he seemed to have to pull very hard and when it finally popped out was very painful for a short period of time.

I was remembering that but this time a young lady pulled it out as she was putting a cloth cover around it and talking to me and with a quick pull and a twist of the wrist it was out like that and I hardly felt it and no pain at all. She knows what she is doing for sure.

 

I saw my speech therapist on July 15 as she wanted to check up on me. In my case she has more to do with swallowing, etc. than speech. She gave me a set of exercises to improve my swallowing and it has helped me improve my swallowing function to be more efficient and effective and eliminated any coughing during eating and drinking.

 

 

About the week of July 27 I had a lower molar next to last on the right side get sore and swell up a bit.

I went to the dentist and he X-rayed it and said the tooth has to come out.

But due to my cancer treatment, he sent me to Conestoga Oral Surgeons.

He sent me there a couple times previously very good place.

In the meantime I took a 10 day run of penicillin antibiotics which has the swelling and soreness is gone you wouldn’t know I have a bad tooth.

The oral surgeon does not want to pull the tooth till I have HBOT Hyperbaric oxygen therapy.

This link gives some info if you want to check it out.

https://www.uclahealth.org/hyperbaric/Workfiles/clinical_updates/hyperbaric/HyperRad-01-15-13.pdf

It would be 20 treatments before the tooth is pulled and 10 after.

Each is roughly about 2 hours beginning to end.

Basically you just lay in a plexiglass sealed tube-I think I can sleep through it.

https://www.youtube.com/watch?v=mh5UveY4r-U

I was at the campus for an introductory meeting on Thursday 8-27-20 with nurse and doc.

They are setting me up to start probably around Sept.14.

In the meantime with this, I had to get blood tests and cardiogram and have to go to Lancaster General Monday and get an electrocardiogram. More involved in this than I originally thought.

 

In the meantime I have had a sinus infection and dealing with it with OTC meds for 2 weeks.

Finally went to the docs and they gave me antibiotics to take and I ended up taking 2 different types and got a reaction to both. First one made me itchy on my lower legs and forearms after 3 days and the second one after taking only one pill my legs and part of my stomach and back turned red like I had a sunburn so I quit those and the doc had me taking Benadryl 2 pills 3 times a day to combat the allergic reaction which worked but then I started getting hyped up from that so I quit that. So my sinus seems better and I am off all those meds except for a little over the counter stuff and using NeilMed sinus rinse. They told me to wait a while as it seems they are afraid to prescribe any more antibiotics because of my reactions.

This is strange to me that I had reactions because all my life I could take anything and never had any problems.

Again sorry to make this so long.

Just a couple bumps in the road of life, everything's good and this is just to update I’m not whining but I figger everything is getting settled for awhile at least.

I think that is all for now, I will try not to wait so long next time.

I'm glad the wife is OK we need at least one healthy one in the family.

I hope all you folks are doing well and wishing you the best-Take care-God Bless

 

 

 



 

Comments

  • MarineE5
    MarineE5 Member Posts: 1,034 Member
    edited August 2020 #2
    Thank you for the update

    Russ, 

    Glad to hear the the two CT scans were clear and hoping the PET Scan has the same results. You touched on a subject that I keep an eye on, my teeth. I hope things go smoothly for you in the future.

    My Best to You and Everyone Here

  • Logan51
    Logan51 Member Posts: 468 Member
    #3
    Russ

    Yes, it sounds like very good news. Is strange that you've developed allergic-type reactions to certain medicines, but that could be a result of all the Chemo.

    The hyperbaric chamber has been a standard for tooth and jaw work for at least the last 7 years. I wanted to have a tooth pulled years ago, was told I'd need to use the new hyperbaric chamber my Hospital system had, but my Insurance refused to cover the charges because they said it was "dental" and I ended-up w/root canal & Crown. Know Sash talked about it on the Forum years ago.

    Hoping things stay in the Positive for you physically. Know you can mentally deal with whatever comes your way.

  • nancytc
    nancytc Member Posts: 70 Member
    #4
    Awesome update! A very

    Awesome update! A very interesting read. It all sounds pretty good. I always say, as long as the cancer is not back, I can deal with the rest. Sounds like you will be getting alot of naps due to the one molar extraction! I am, like you hypervigilant about the xylimelts every night, and also I floss with purpose at least once a day. Keep us all updated Russ. You are a dear.  Nancy

     

  • Drivingdaisy
    Drivingdaisy Member Posts: 263
    #5
    Hey there

    I did try to send you a response last night finished went to send it got error so all that typing for nothing.  Did just read your back history, Wow you have had an adventure in this world of Cancer.  Here you are reaching out to Me you've been thru a lot also.  I've been lucky NED for 4 going on 5 yrs, knock on wood,  just lots of problems.  Congrats on FT removal & moving forward.  It is another slow procession but think you know that.  But good news instead of bad except for tooth.  Hyerbaric another new journey.  They would need to knock Me out for 2 hrs locked in there.  But you seem extremely strong the true Warrior in survival.  Thank you again to reaching out to Me with your support.  Need it, so tired of all this.  But boy you've been thru a lot.  Have a fellow Warrior I met during Chemo We finished treatments about same time.  She never did need to get a FT though neck skin basically falling off and had to stop Rads for a week.  Couldn't wear mask so much damage.  In the 1st yr of recovery had a new Cancer in each lung, rib bone than liver now 4 yrs later Adrenal all with separate treatments.  But she is like you a Trooper & just keeps going positive, she refuses to acknowledge Cancer kinda of don't talk about it it not there & will just creep away.  We have same Chemo Dr different Rads & ENT.  Went to same places. Funny after Rads clinic got hit with a Class Action lawsuit plus Chemo got placed on it due to referees (told you Good ole boys club) but Rads got new building office & new state of the Art Rad machine according to her.  Guess where all our money went.  Geez all My life was worth $12.73. Does touch the bills we have racked up.   But you keep on trucking Warrior Man, your and inspiration.  I'm here also if you need Me to vent or ask questions.  Do you Face Book?  Their Messenger service better than here, have noticeced 2 replies you have never received on this site.   Your a terrific person.  Hugs from a distance in Covid Florida........Lisa

  • Mikemetz
    Mikemetz Member Posts: 465 Member
    #6
    Good to hear from you

    Russ--good to hear from you and get that update.  Sounds like a lot of time and effort for a tooth extraction, but that's how it works in the abi-normal of HNC survivorship.  It sure beats the alternative!  The boredom of the HBOT nearly drove me crazy, so make sure you know how to find your Happy Place in the chamber.

     

    Keep us posted, and best wishes.

    mike

     

  • lorijeannj
    lorijeannj Member Posts: 56 Member
    #7
    Good to hear

    Good to hear but sad about the teeth.  

    My husband lost a tooth but still had bottom part in gum had his pulled because dentist spoke to radiologist and felt radiation did not reach that level in jaw.  It worked out thankfully.  I was very nervous.  At some point he may have to go to hyperbaric because no one mentioned taking care of teeth with trays.  3 yrs and counting, minus 5 teeth pulled initially, he still has some left and partial dentures.  It is a struggle for him to chew and swallow anymore.  He eats, but I hate to see the struggle.

    Take care Russ.  Hyper is the way to go.

  • wbcgaruss
    wbcgaruss Member Posts: 2,465 Member
    #8
    Thanks All You Sur-thrivers

    For all the positive support and feedback it is what keeps us all going. I appreciate all your responses. Take Care-God Bless

  • wbcgaruss
    wbcgaruss Member Posts: 2,465 Member
    #9
    lorijeannj said:

    Good to hear

    Good to hear but sad about the teeth.  

    My husband lost a tooth but still had bottom part in gum had his pulled because dentist spoke to radiologist and felt radiation did not reach that level in jaw.  It worked out thankfully.  I was very nervous.  At some point he may have to go to hyperbaric because no one mentioned taking care of teeth with trays.  3 yrs and counting, minus 5 teeth pulled initially, he still has some left and partial dentures.  It is a struggle for him to chew and swallow anymore.  He eats, but I hate to see the struggle.

    Take care Russ.  Hyper is the way to go.

    Sorry to Hear

    Of your husband's teeth problem but it seems to be an unavoidable part of the head and neck cancer treatment journey. With diminished saliva with most of us, my dentist tells me the less than normal flow and replacement of saliva changes the natural state of the balance of the mouth (don't know if I stated that correctly). But here is a link from The Oral Cancer Foundation that goes into much detail   https://oralcancerfoundation.org/complications/xerostomia/   The only thing we can do is take as good of care as possible of our teeth to make them last as long as possible always flossing, brushing often, using Xylimelts, and for me chewing a sugarless gum urges the flow of saliva on a bit. I was told the HBOT treatment does not guarantee any problems but they recommend getting it to help you with a proven method of helping blood flow and increased oxygen levels. They are trying to avoid Osteoradionecrosis https://oralcancerfoundation.org/complications/osteoradionecrosis/  basically bone death of the jaw bone and if I can help avoid that I definitely want to. Best wishes to you and your husband lorijeannj-Take Care-God Bless

  • big G
    big G Member Posts: 177 Member
    #10
    wbcgaruss said:

    I Would Just Like To Add

    I am eating and am very thankful for that but since my last cancer episode I have to chew things more and it takes me a bit longer to eat but again I am very thankful for that. As far as pills I am still grinding them down except for small pills like my Thyroid pill I take or other pills I can take of similar size other than that I process them with a small hand pill grinder from CVS or I am sure you can get them at any drug store and opening capsules or using a liquid med if possible. I mix with apple sauce or I guess pudding or something else could be used. I just don't trust trying to swallow them yet for fear of them getting stuck. It is possible a dilation may be in my future but I will be working with my speech and swallowing therapist on this. My situation is actually very good considering the treatment i went through in my opinion. Best wishes to all-Take Care-God Bless

    update

    Russ, good to hear all the scans look good. Glad you are doing better. I  hope your able to resolve the tooth problem. Thanks for letting us know. 

  • wbcgaruss
    wbcgaruss Member Posts: 2,465 Member
    #11
    I Would Just Like To Add

    I am eating and am very thankful for that but since my last cancer episode I have to chew things more and it takes me a bit longer to eat but again I am very thankful for that. As far as pills I am still grinding them down except for small pills like my Thyroid pill I take or other pills I can take of similar size other than that I process them with a small hand pill grinder from CVS or I am sure you can get them at any drug store and opening capsules or using a liquid med if possible. I mix with apple sauce or I guess pudding or something else could be used. I just don't trust trying to swallow them yet for fear of them getting stuck. It is possible a dilation may be in my future but I will be working with my speech and swallowing therapist on this. My situation is actually very good considering the treatment i went through in my opinion. Best wishes to all-Take Care-God Bless

  • SASH
    SASH Member Posts: 421 Member
    #12
    HBO

    Been there, done that.  If you get anxious, ask doctor for something.  I needed to take ativan and an additional BP pill to get me into the tube.

     
  • wbcgaruss
    wbcgaruss Member Posts: 2,465 Member
    #13
    SASH said:

    HBO

    Been there, done that.  If you get anxious, ask doctor for something.  I needed to take ativan and an additional BP pill to get me into the tube.

     
    Thanks Sash

    This doc already has me covered as they prescribe a low dose of Xanex and they want their patients to take one in the parking lot when they arrive. I told them I figure I will be ok as I had radiation in a tube my first time and have had PET scans etc. but they still want me to take the Xanex so I'm following docs orders as I figger they know best.

  • Logan51
    Logan51 Member Posts: 468 Member
    #14
    Yep

    Coincidence: my PCP had me take 1/2-tab of Xanex each morning before my Rads, Russ. I was getting zapped in 20 places/session, and on Fridays they took a couple X-ray shots with my skull mask still clamped to the table. I had difficulty swallowing for those 25-30 minutes. And yes, it made a difference- especially compared to the time when I did a little Morph before the Rads and had a freak-out table session...Xanex followed soon thereafter.

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