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#118361 06-22-2010 01:41 PM
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grogg Offline OP
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Ok, so it has only been a couple of months since the op and treatment. My oncologist did mention some of the after effects, but I am not sure she told me everything. Could someone please shed some light.
Finally the Erbitux has worn off, I don't look like a 16 year old with acne. I was told it would wear off in 2 weeks, took like a month. I also don't know if it's from the radiation, I do find myself being tired all the time. The first time around I had no side affects, then again the radiation was not as harsh.
My cheeks are still swollen like I am retaining a lot of fluid, is this from the radiation?
My mouth is still extremely dry, especially at night. How long does this go on for, it feels like I am in the desert? I am trying to take my meals orally, but I seem to choke on the thicker foods. Water and cool drinks seem to go down well, but I suppose the fact that I have the flu may contribute to that. I hate this peg, but i suppose thats whats keeping me alive. What should I do regarding my speech, does it get better in time or would you recommend a therapist?
I apologize for all the questions, I am not expecting miracles at all, I just am trying to find answers from those who have already been through all this.
My first op was not so bad, I didn't need a peg and within a month I had healed up and was eating almost anything. I suppose I had not lost much then. Unfortunately now our lives have changed drastically and trying to find the reality of this may take a while.
One other thing,seems that I am on a roll.......has anyone had the jaw reconstruction using the fibula. I am just trying to find out how long the side effects of that take to heal. My feet cramp terribly some nights, asif I have bad circulation.
Anyway thanks for the read.

Still adapting, Greg


04.17.09-neck dissection, free thigh flap
06.01.09-rad.30 sessions
10.20.09-chemo.taxotere,5fu,sisplatin
02.16.10-radical bilateral neck dissection, resection of the mandible, full glossectomy, jaw reconstruction with fibula. g-tube
03.30.10-chemo.erbitux/rad. x46
05.28.10-MRI, all clear
grogg #118373 06-22-2010 06:15 PM
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The dry mouth my be there for awhile I am afraid. I use Biotene and Oasis for that. You can find those in the toothpaste isle.


Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
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Gregg, the swelling from an operation like this can take aprox. 6 months to go down. At that point you pretty much look like how its going to be. More reconstruction can always be done down the road. Its very very tricky operating on areas that have had radiation. They dont heal easily.

As far as the tiredness goes, thats due to the radiation. Im surprised the first time you went thru it that it didnt affect you more. Fatigue can last for a very long time after treatments, unfortunately you have had a double dose so it may be even harder on you. Its unusual for patients to go thru radiation twice. There are only a couple people on here who have had to do that. Once is enough of that stuff!!! Its also unusual to be given chemo alone. Chemo doesnt cure oral cancer by itself, its normally used in conjunction with radiation to target the tumor and enhance the radiation's effects.

Regarding your speech, a therapist would be a great idea. Ive just started looking into that myself, even though my speech is pretty good, it might help. I dont know much about helping a patient that has a total glossectomy. Maybe a good speech therapist would be helpful in helping you to gain more mobility to help with your eating. They do swallow tests to see if you are physically capable of eating without choking or having it go into your lungs. We all share your hatred of the peg tube!!!! Mine has been there for 10 months, previously I had it for 1 1/2 yrs.

There are a few people who have had the fibula bone used for their jawbone on here and Im hoping they will help you with the leg and feet issues. I had a jaw made of steel when I had my jaw removed last year. This kind of operation is a big one. It takes a year to recover, possibly more til you get to your new normal. Im at 10 months post surgery and am still healing. Ive had some infection problems so have a picc line and take strong antibiotics 3x per day. I also had 40 hyperbaric oxygen treatments to help with healing. There was a open wound below my ear that had my jawbone exposed, that darn spot wouldnt heal til about 2 weeks ago. I credit that to the combo of antibiotics, the hyperbaric (HBO) treatments and the wound care specialists who used special creams and bandages. I still have alot of fatigue even though I have tried to build myself up by walking, I tire very easily. I dont know if HBO is something that is available where you are. Here in the US its very expensive and not all places offer that service. It is something that would help speed your healing and help with the fatigue.

Im not a complainer either, cant be when I have gone thru this and lived to tell about it. Your story shows me that others have had it much worse than I have with this type of operation. You are a very strong person to have endured so much in such a short amount of time. Most important thing is that you are currently in good health with having the clear scan smile

Please tell me about the free flap from your thigh. That was done 14 months ago. Do you still have a red area where the skin was taken from? How is the skin there? I have 5 areas where large amounts of skin were taken. These areas are still red and appear very sore but they are ok.

What about your memory? Was it affected at all? Were you kept asleep for any length of time after the surgery? I was kept asleep for 3 weeks and most of my memory for aprox 1 month prior and 3 months after is missing. I only remember bits and pieces of info. My poor son came everyday to see me and I would always ask him why he never came to visit. After he would tell me a few things we talked about, I could then remember he really was there.

Hope I was of some help to you. It will get better in time. Unfortunately it takes a very long time to bounce back from this.


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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Greg,

Welcome to the boards, I'm glad that you found our little group. What you will find here are people that have traveled a similar road as you...asking as many questions as you can is a good thing when you get the answers from people that have traveled that path.

I've had a mandiblectomy using my fibula as a replacement...my flap was actually made from tissue surrounding my fibula as opposed to the thigh as you've had. The leg hurt terribly for months after the surgery and I was stuck with a walker for most of that time...then graduated to a cane. Now, 2 years after surgery, I'm scooting around quite well. I went jogging on it a while back but spend most of my day running around a very busy restaurant and do very well. It still is sore at the end of the day though and will never be what it was. I did get cramping in it at first, still do occassionally, but was told to up my electolytes to help it. Potassium will help the cramping but be careful with the dosage...as always ask your Dr about supplements etc...

I do go to a speech therapist, I love that gal really. I noticed an improvement the more I went, she also tackled my swallowing issues. I'll never be like the "old me" but I see steady improvements...it's a journey really. I do recommend seeing a speech pathologist.

As far as the dry mouth...Biotene brand toothpaste, mouthwash and gum save me really. I still wake up in the morning with my mouth feeling like I went on a drinking binge, but the rest of the day is OK.

Hang in there Greg,

Eric


Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
grogg #118399 06-23-2010 04:11 AM
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My Mom who is 80 has Squamous Cell Base of the Tongue Cancer. She has been through many chemo and 23 radiations. She had to stop radiation because she could not breathe. All of the docs said it was from swelling in the throat. They did lung and heart tests and found nothing wrong. It has been four weeks since all the treatments have been put on hold. She still goes to the cancer doc two times a week for bloodwork and hydration. But, she keeps getting sicker everyday. They say that hydrating her will perk her up, but I think this is hurting her. They are afraid she will go into renal failure if they do not hydrate her. Sometimes her potassium also goes up and they said they need to flush it out of her system. She has a PEG tube, thank God. Her voice came back and she is starting to eat soft foods. Why is she getting sicker?

8888 #118402 06-23-2010 05:16 AM
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8888, welcome to OCF. Please start your own thread so it will get the attention it deserves and not take away from the original poster's topic. You should read the very first tab called...new posters read this first. It will help guide you around OCF. The start your post under the Introductions tab.

As far as hydration goes, its very very important. If she doesnt get enough hydration she can end up hospitalized. It will make her feel terrible. As far as her illness goes, everyone reacts differently to treatments. Hopefully she is being treated at a cancer center so she would have many good doctors caring for her.



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: Jun 2010
Posts: 7
grogg Offline OP
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Posts: 7
Thanx for the help regarding post treatment issues Christine. Just regarding the free flap from the thigh, it's healed well, a bit red around the area and still sensitive. Regarding memory loss.... I was only under for the duration of surgery. My wife does tell me that they battled to keep my pain under control(I was using morphine prior to op and had become immune to it). They sedated me for the first night. I was in icu for 3 days and 4 days in a general ward. The worst part was that my son was not allowed to visit me due to his age......I would not have wanted to visit me either for the way I looked. I laugh at it now but I was scary.
As far as chemotherapy and radiation go.....when I was first diagnosed we did not know half as much as we know now. I just accepted the fact that I had cancer and that they were going to remove it surgically. Didn't ask questions or get a second opinion. I thought I would be cured after the treatment, little did I know. I only found out that chemo/rad worked best together the second time around. I do have questions for the surgeons and my oncologist here in Cape town regarding my first treatment. Wow to think that at the beginning of the year we were told that I would never survive a second surgery


04.17.09-neck dissection, free thigh flap
06.01.09-rad.30 sessions
10.20.09-chemo.taxotere,5fu,sisplatin
02.16.10-radical bilateral neck dissection, resection of the mandible, full glossectomy, jaw reconstruction with fibula. g-tube
03.30.10-chemo.erbitux/rad. x46
05.28.10-MRI, all clear
EricS #118425 06-23-2010 10:44 AM
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Posts: 7
grogg Offline OP
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Eric , glad to hear of someone with same op. Regarding the tissue used In the mandiblectomy, the tissue around my fibula was also used. It was my first op where I had a partial glossectomy that they used the thigh tissue. It seems such a waste because that did not last long. My question is did they get clear margins, or was it the treatment that was not planned properly. I ain't pointing fingers, it's just that from a small tumor on my tongue how did it come back so aggressively that it attacked the whole jaw. I praise the surgeons who operated on me in LA, because only once the pathology report came back clear did they then remove a further 2cm and put me back together. I don't think they were as thorough back home. I am not complaining, on the contrary I am happy to still be here.
Thanx for the support all the same, it's a different lifestyle from the one I was accustomed to.


04.17.09-neck dissection, free thigh flap
06.01.09-rad.30 sessions
10.20.09-chemo.taxotere,5fu,sisplatin
02.16.10-radical bilateral neck dissection, resection of the mandible, full glossectomy, jaw reconstruction with fibula. g-tube
03.30.10-chemo.erbitux/rad. x46
05.28.10-MRI, all clear
grogg #118508 06-24-2010 05:03 PM
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Posts: 681
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Grogg,

I had a fibula replacement of my mandible in Jan 09. The swelling of my foot lasted well into the summer. I wore Crocs and would suggest some such shoe which is easily removed when you are not walking around. I tried to keep my leg elevated as much as possible when I was sitting. I always prop my foot up at the table on the leg of the pedestal. You don't have to buy a new dinning table but it would be nice if you could use A foot stool or even another chair. I had a physical therapist come to the house to help with exercises (this was paid by ins). Perhaps your dr could help you get therapy.

I still have a great deal of fatigue but my primary care physician says that it is because my body has been sujected to so much in the past few years. (In addition to all the cancer treatments I had the replacement, recsection of my lip[ and surgical implant for a bladder pacemaker and hospitilization for an infection at the site of the sutures for that.) Also I am a sr. who is not very athletic. I still get very tired easily.



SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
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