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Joined: Apr 2017
Posts: 9
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Joined: Apr 2017
Posts: 9
Hi everyone,

I wanted to introduce myself and connect with you all. I am a healthy 30-year-old female, non-smoker, only social drinker and with no past medical history minus celiac disease. Here’s my story…I was diagnosed March 10th with tongue cancer stage 2, and then post tumor removal stage 4. I underwent a partial glossectomy with reconstructive surgery (leg and forarm) with a wonderful team of medical professionals at University of Miami hospital/Sylvester cancer center. I had a positive recover in the hospital. I was only in the ICU for 24 hours, I got up with PT day 2 and I was discharged 6 days without a trach. I was discharged with my NG tube and got it out 9 days after surgery to my surprise. At home, my husband and family helped me with daily living activities but I was also very independent. I started PT for my neck and shoulder my second week of being out of the hospital. After asking twice, I received a referral for Occupational Therapy.
I saw my doctor on a Friday (week 3 post op) and he said I had a hematoma on my neck. My neck was huge! The next day I started to feel unwell and not myself and was thinking, I should take my temperature. Much to my surprise my neck started draining! I ended up in the hospital with an internal bacterial infection. The doctors said it was nothing that I did with wound care, it is just very common with head and neck surgery. I am just so thankful the infection presented itself because it could have been way worse! I was in the hospital for 3 days and then home IV antibiotics (nurse came to house for 7 days) and not oral antibiotics.
I start radiation on Monday. I will go M-F for 6 weeks. I am a little nervous about the side effects of radiation to the tongue, lower jaw. I want to stay positive about this but it is also difficult not knowing what to expect. Any tips?
Thanks for reading my story! There are many topics that I have found important throughout this process and I look forward to touching base in this forum. Best!


31 years old, SCC, happy and healthy!
03/10/17: Diagnosis of Tongue Cancer
03/20/17: 9 hour surgery, Hemi-glossectomy, radial forearm free flap, femur skin graft
05/01/17: Radiation 6 weeks
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
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Welcome to OCF, Mrs Ziggy! Im glad you made an Introductory post so we know where you are coming from with OC. Im sorry to read what you have been thru already. I notice you have made a couple posts already, so you are quickly becoming a pro at posting. Read and educate yourself about OC so you can be the very best advocate for yourself that you can be.

Over the years Ive advised hundred, probably more like thousands of OC patients and caregivers. This biggest thing you can do is make certain to always hit your daily intake minimums of 2500 calories and 48-64 oz of water. This is so vitally important and is a huge factor in determining how easily you will go thru rads. Im sure as you go thru rads I'll become a nag about this. I dont want to ever see any other patient suffer like I did when it is preventable. For now, eat like crazy and dont worry about adding a few pounds. You do not want to go thru rads and recovery with cravings and not be able to eat that item for several months. As far as helping with your intake, ask your doc for an open prescription to get extra hydration in the chemo lab a few times per week. This will help you feel a little better right away after a couple bags of fluids. This is especially important when swallowing begins to get uncomfortable

Line up any additional helpers you can, write down their info and tell them when the time comes you will let them know how they can help. Rads for OC can be a hard thing to go thru, the more helpers the better. Many patients will take strong pain meds and arent feeling the best so shouldnt drive, especially long distances. If you havent already checked with the American Cancer Society (ACS), I suggest calling them for some help. The ACS has a great resource to help patients get back and forth to their treatments. Even if you can get a volunteer driver one day a week, that would be a nice break for your caregiver. The drivers are all cancer patients or caregivers. Its an excellent program, I volunteer and help drive patients once in a while. The ACS also has some financial aid programs to help cover prescriptions or transportation costs up to $300. They are available 24/7 so give them a call any time of day or night you have a few minutes.

I know you are starting Monday and I wish I could have told you some of these things earlier. You should have seen a dentist to get a good check up fluoride trays made. Rads a hard on your teeth, the trays need to be used every single day to help keep your teeth healthy thru rads. Also any teeth that arent in the best shape need to be removed and you should have time to heal before beginning rads. You should have gotten a complete blood work up done including thyroid levels (men should have their testosterone levels done too). Its very important to get these baseline numbers now, before you start and treatments. Down the road after you are well into your recovery, you will need these baseline numbers. Its impossible to going backwards and get your baseline numbers after treatments begin. If these things have not been done already, you may want to postpone your rads until they get done. So if you havent gotten your dental exam, fluoride trays and blood work then call your doc first thing Monday morning and get the ball rolling on these things.

Wishing you all the very best with everything!!!



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
Joined: Apr 2017
Posts: 9
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OP Offline
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Joined: Apr 2017
Posts: 9
Hi Christine, Thank you for welcoming to the group. I appreciate you taking the time to reply to my post and others. I was reading your signature and you are fighter! NO wonder why you are such a great advocate. Thank you for your advice about radiation. I did see a nutritionist who educated me on gaining weight the past 2 weeks, I am trying! I am on Gabapentin as one 2 weeks ago and I do think that it suppresses my appetite (which is unfortunate). I did get a dental clearance and thankfully I am all clear. My dentist did not provide fluoride trades, he mentioned the importance of fluoride for after treatment so now sure about that. Great input about the thyroid check. They mentioned this but I have not had blood work for this since January).
I do want to ask you, how long did it take your trach hole to close? I am SO close for the second time) and Monday will be 6 weeks from surgery. The main thing is it is so annoying to press when talking but I am very diligent with dressing changes and pressure when talking.


31 years old, SCC, happy and healthy!
03/10/17: Diagnosis of Tongue Cancer
03/20/17: 9 hour surgery, Hemi-glossectomy, radial forearm free flap, femur skin graft
05/01/17: Radiation 6 weeks
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Im happy to hear you are taking such good care of your trach site! That tells me you are doing a great job at following your physicians orders.

Im wondering if you had a possey muir valve trach? That kind allows you to talk without touching it or doing anything (of course this is if you have the capability to speak). I had the possey muir valve trach while I was in for my big surgery in 2009. If you ever get another trach (hope not!), ask specifically for the possey muir valve trach. If your trach has not yet closed are you still starting rads with it not healed yet? With your wound being open still, and doing rads, it could affect the trach sites healing capability. All wounds, sores, cuts, etc always heal from the inside out. Im wondering if all the cleaning and pressing on the hole when you talk has any impact on how fast its closing? Another thought is a diet high in protein can help speed your healing ability. I would check everything I mentioned (cleaning the site, covering the hole often, high protein in your diet to help heal) with your doc before you start rads.

We can compare my trach closing to your but its not really an accurate comparison. I'll explain as best I can. I had radiation already when I had the trach so I was not able to heal like someone who didnt yet have rads. Back in 2009 when I had my trach, it was a very bad time for me. My memory to this day is still foggy regarding everything from a couple weeks before I went in until about the first 2 months after I was back home. I think being kept asleep for 3 weeks and the complications I went thru took their toll on me. I'd be surprised if this time ever was clear to me. As far as the trach question you asked me about goes. My trach was removed within the last couple days of my 2 month hospital stay. Im going to guess the trach closed about 4-6 weeks after I went home. I had all kinds of things going on when I was at home and the trach site was very minor to me compared to all the other ailments I had. I was on IV antibiotics 3x a day for 8 months due to not healing, I had 3 wounds the size of my entire hand where skin was taken to be used in other places. I had a skinny tunnel about the size of a coffee stirrer that was about 6" long that just would not close and kept getting infected. It went from a hole behind my ear to almost my nose. It took months of wound care specialists, visiting nurses and HBO to get that tunnel to finally close about a year after I went home from my extended "vacation". I dont know if the extra strong antibiotics had anything to do with helping the trach to close???? This was just what I experienced, please understand most patients will NOT go thru this like I did. You should have it much easier with your trach site closing very soon. I would still mention it to your oncologist .

I did some research and Im concerned about your dentist not making the fluoride trays. Maybe its something new but as far as I know trays were always done before so patients could start using them before they started rads. I dont know how this will work if you do it after you finish rads. What Im concerned about is the impact rads will have on your teeth. It can cause all kinds of problems like radiation caris and dry mouth which make it hard for your teeth to stay healthy without using the fluoride trays. Im thinking of how difficult it would be to make the trays after you had rads. Most OC patients have some painful mouth sores (mucositis) that can take 6 weeks or more to heal. I cant imagine how you or any other OC patient with mucositis is going to be able to get fluoride trays made. To me this seems like its impossible, I could never have gotten my molds made after rads. I probably focus on this because I lost my teeth to radiation damage and I had and used the flouride trays. Patients who dont have them can end up with much bigger dental problems down the road. For example, having a tooth pulled is easy for the general public but its a big deal for OC patients who had rads. I dont want to see you have trouble later. In case you werent told... OC patients quickly learn the importance of impeccable dental care from here on out for the rest of their lives. You'll have to brush and floss after every meal. A waterpik can be a huge help with keeping your mouth the cleanest possible. If you dont have one I suggest getting one and using it on its lowest setting with warm water and a little non-alcohol mouthwash. If your dentist didnt mention needing special mouth rinse, ask your oncologist if this is something you should have and they can write the prescription for it. I think my ENT is who got me started on the peridex prescription mouth rinse. Is your dentist is part of your treatment team at your facility or if they are someone you have been going to for years? Many dentists have never treated an OC patient so its not unusual for their to be a learning curve with how to best treat OC patients. Anyone who has OC should be seeing a special oncology dentist (very hard to find!) or a prostheodontist (slightly easier to find) who is a special dentist (years of extra training) who treats complicated cases (like OC patients).

The main OCF site, has hundreds of pages of info about all kinds of things OC patients who want to learn about their illness, treatments, recovery, etc will want to know. Im sorry but some of our pages are currently being worked on so they may not all be available right now. I added a few links from other sites that should be helpful to you too.


Main OCF site ---- Understanding OC

Dana Faber CCC --- Mouth care for cancer patients

NIH ----- Oral Complications of Cancer Treatment

NIH --- Oral Cancer, Treatment options depending where tumor is located, stage, etc...


Best wishes with everything!!!






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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