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#83132 10-29-2008 06:44 AM
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I have been following this web site for months, while my husband underwent treatment. During that time, I was too stressed and busy to register or post. I want to thank all who do post and answer questions. The info and support has been very helpful.

My husband is now 6 weeks post tx. He is improving but it is all still very difficult, especially the continuing mouth sores, swelling on one side, and thick mucus, alternating with dry mouth. Continues on PEG tube feedings (2 Cal). Recently increased oral diet from clear fluids to puree soups, etc.

Worrying about the enormity of permmanent change going forward, is starting to take it's toll on me, after remaining strong during tx. We have always been active - especially enjoyed extensive independent world travel. My husband was always healthy and strong. All his life he has exercised, ate well, and had a great optimistic nature. The gym work outs also provided a routine and social network in retirement. Needless to say, this was a tremendous shock, as I'm sure it is to all.

CT 10/20: clean, except for original affected lymph node (RO reports it is probable scar tissue). F/U PET scheduled 11/6

We are trying to adjust to the post tx period, after four months of concentrating on getting through side effects.
travelottie


CG to husband, dx @ age 65, nonsmoker/social drinker. Dx 5/08 SCC Stage IV, BOT T1N2aM0. 33 IMRT - completed 9/12/08. Induction Chemo (Cisplatin, Taxotere & 5FU), plus concurrent Cisplatin.
1/09 PEG removed; 5/09 neg PET/CT; 5/10 PET/CT NED
Dental extraction & HBOT 2013; ORN 2014; Debridement/Tissue Transfer & HBOT 2016
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As you well know, treatment affects us different ways and so does the time for healing. For me, it took a good 3 to 4 months from my last treatment to really feel a sense of normalcy. The body takes a while to rid itself of the radiation effects and all that mucus, dry mouth, and mouth sores are unfortunately very typical. Good luck and know that better days are ahead!


Bill . . . SCC - originated in right tonsil, drifted into neck ( 28 lymph nodes removed - one positive ). Radical neck dissection in September 07, completed 34 radiation tx on January 4, 2008. Used Peg. Non smoker, 61, good shape, no previous health issues. Second year PET scan - "all clear".
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Welcome to the site, and there is lots of information available that you should find helpful.

My diagnosis was very similar to your husband's, as was my treatment, except it seems he did not have neck dissection as I did.

What I have found is that you can't spend time worrying about side effects or long term sequelae that may or may not occur. I had a fairly easy time through treatment, relatively speaking, in that I did not require a PEG tube, and did not have severe radiation burns. I have the current battles of dry mouth, shoulder and neck stiffness, etc. that are part of the whole package, but I play golf, travel a great deal, work every day and do pretty much what I did before treatment. My sense of taste is not as good, and my shoulder issues make certain tasks a little more difficult, but I do them. An extra Advil every now and then is a relatively small price to pay.

My wife and I travel extensively, and we went on our first trip just a few weeks after treatment ended. I've been on a few since, and enjoy them just as much as before.

What will tomorrow bring? Who knows? I just try to keep a smile on my face, deal with today, and face tomorrow when it gets here. ;-)


Jeff
SCC Right BOT Dx 3/28/2007
T2N2a M0G1,Stage IVa
Bilateral Neck Dissection 4/11/2007
39 x IMRT, 8 x Cisplatin Ended 7/11/07
Complete response to treatment so far!!
JeffL #83140 10-29-2008 09:28 AM
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Thank you so much Jeff & William. It is good to hear that with some adjustments, there is hope. My husband is generally very resilient but this has brought him to his knees.
Removal of neck node is still being evaluated.

Jeff - How did you travel several weeks after finishing treatment? My husband was still gagging & vomitting almost daily from thick secreations.

This morning has been difficult for no particular reason. Perhaps more time to think now....
Lottie


CG to husband, dx @ age 65, nonsmoker/social drinker. Dx 5/08 SCC Stage IV, BOT T1N2aM0. 33 IMRT - completed 9/12/08. Induction Chemo (Cisplatin, Taxotere & 5FU), plus concurrent Cisplatin.
1/09 PEG removed; 5/09 neg PET/CT; 5/10 PET/CT NED
Dental extraction & HBOT 2013; ORN 2014; Debridement/Tissue Transfer & HBOT 2016
JeffL #83145 10-29-2008 10:02 AM
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I like, Jeff, had a fairly easy time in comparason with many, but I also had no chemo or PEG. My taste is close to 100% and was mostly back in 6 months although it took 4 years before I could handle anything acid like vinegar or red wine. We too travel to Europe and still do for 5 weeks every other year. Five months after rads, we took a 2 week vacation to St. Kitts to just relax. Rented a condo which allows you to not have to rely restaurant food with your iffy mouth although we did eat dinner out.

Since your husband went into to this with healthy habits, it shouldn't be too difficult for him to resume them. At 6 weeks he should be able to do some exercise even if only a walk around the block. Does he have a suction machine for the mucous, a humidifer in the bedroom, rinsing with baking soda and water, or taking robitussin or similar? Is he attempting to eat moist foods and drinking plenty of fluids? Even if he is on the PEG, he must continue to swallow. He should try taking a little by mouth if he can.

I would guess you guys will be doing world wide travel again. Why don't you try to find a relaxing place with good, not spicy food, and plan a trip to it for sometime in the spring. It would give you both something to look forward too and a time to recuperate from the ordeal your bodies and minds just went through.

Take care,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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Eileen, What an encouraging messsage from someone years out from treatment! I thank you.

My husband is walking outside and has been doing this on an almost daily basis, thru tx. Hopes to get back to treadmill at gym by 11/1.

Mucus has decreased enough that he doesn't want suction machine. (tried one while OP in hospital). He uses baking soda sol, gelclair, & biotene mouthwash. I will look into humidifier. RO said no to Robitussin, will check this out again.

Re eating: tolerating 4-6 oz pureed soups, yogurt, & pudding. Drinking water throughout day. Next week will try scrambled egg, etc. RO said should challenge himself each week to more difficult textures - if unable to eat soft/solid food by 8 wks post rad, will need to be checked.

I have thought about planning a trip to a location where we could be self-contained. I agree that spring might be the time frame to aim for. Glad to see that you also think that's reasonable.

Should I continue this on another forum? Lottie


CG to husband, dx @ age 65, nonsmoker/social drinker. Dx 5/08 SCC Stage IV, BOT T1N2aM0. 33 IMRT - completed 9/12/08. Induction Chemo (Cisplatin, Taxotere & 5FU), plus concurrent Cisplatin.
1/09 PEG removed; 5/09 neg PET/CT; 5/10 PET/CT NED
Dental extraction & HBOT 2013; ORN 2014; Debridement/Tissue Transfer & HBOT 2016
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You said your husband was into exercise and active before treatment, and that was the same with me. At six months post treatment I started jogging on my treadmill, which was around February. In Ohio that is snow and cold season, so exercised inside for February - April. I gradually worked my distance and speed up. It was a slow process. Throughout this past summer I have ran in probably 8 5K(3.1 mile) races with my time improving each race. I run 20 - 25 miles a week now. Under your doctors supervision, slowly work some of his old routines into his daily life.

At about 1 1/2 - 2 months post treatment I was eating by mouth cream soups, pudding, and the famous Carnation Instant Breakfast VHC drinks to learn how to swallow again and keep my calorie intake around 3,000 calories a day. I gradually added mashed potatoes and meats with loads of gravey and butter, pasta with a lot of sauce, while swallowing every bite with water. I used frozen dinners that had soft vegetables and foods with gravey. I had to relearn how to swallow.

Last week I had my third post treatment PET scan and finally got a clear report. My first two showed uptake which was found to be healing and scar tissue. So don't be surprised if the first few scans don't come back clear.

I received a lot of encouragement and knowledge from this forum, so keep checking back, reading, and ask a lot of questions.


Tom
SCC T4N1M0 left side tongue & 1 node
Dx 05/21/07 42 yrs old
40 Tx IMRT @ 70 Gy started 06/25/07
Cysplatin & 5fu 1st & 4th wks
treatment ended 08/23/07
TomK #83158 10-29-2008 01:02 PM
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Your husband definitely has the fact that he was active before all this on his side. It will help in the long run. I recovered quickly from everything like Jeff and Eileen but I'm also really young. I used my PEG tube for about 2 1/2 weeks or so after treatment and then one day I just gave it up and made myself eat by mouth and now there's nothing I can't eat except really spicy food. I finished treatments on July 31st and took a trip over Labor Day - nothing too active but it was great to get away. I noticed that my recovery sped up once I stopped sitting on the couch all day and I got out and did a little something every day (it's very convenient that I live near an outlet mall!) and also when I started eating real food - I got stronger much faster.

I still use a humidifier because my sinuses get dry at night. I also used Robitussin when I had the thick stuff going on. We joked that we were going to end up on some sort of government watch list for buying so much.

So, just give it time and things will get back to "normal." I'm dying to get back out and go hiking and camping again soon!


Stephanie, 23, SCC on the right side of my tongue, surgery on 5-19-08, over half my tongue removed, free flap constructed from my forearm, bilateral neck dissection, one positive node. Radiation (32) and chemo (carboplatin) started on 6-16-08. Recurrence 4/09 in lungs.

**** Stephanie passed away 12.15.09.... RIP our dear friend****


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Welcome to OCF!

Your husband is recovering slowly or so it seems. To me he sounds like he is doing fine and is on track. When I was 6 wks pot tx, I still could barely eat. My diet was LaYogurt banana yogurt cuz it is so smooth. Milkeshakes can also become a dietary staple. He may still have the burning mouth and burnt taste for a while yet. A big thing right now is food's texture. The smoother the better, swallowing still is very difficult.

As far as energy goes, this area took me forever I felt to bounce back. I think I finally started feeling not quite so tired at about 4 months post tx. I still was very far from being back to normal at that point. My fatigue lasted thru my second round of OC until I started doing the hyperbaric oxygen treatments. So basically, for me I was fatigued thru 2 rounds of OC and it took me 11 months to regain my energy. At this point I feel like my energy is completely back as Im 16 months post tx.

Hoping your husband feels better soon. Have patience, its been a very long road but it does get better. Glad you registered, we are here for your support too smile


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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I am over 2 years out and everything other than me being 2 years older is just fine, in some ways better believe it or not. I started back bike riding appx 4 months post Tx and it was a challenge but thankfully along came tax season and I didn't get to resume until May which was 8 months post and boy did that extra time make a big difference. In no time I was riding with my old group and I have never looked back. One thing that I was surprised at was the fact that even though my dry mouth at that time was pretty bad (I pretty much couldn't stray far from my water bottle) I could exercise normally and only required fluids like pre Tx.

My taste came back it seemed in spurts. I remember a spurt after 4 months; again after 5 months; nothing noteworthy until 15 months and then again around 23 months. I would say it's almost normal as is my dry mouth as the 2 seemed to improve at the same time.

I didn't have any surgery nor the Peg.

I did test positive for HPV 16 and I suspect his slides would have also.

His recovery will most likely take way over a year and it will be months before he really feels "normal" again. He will have good days followed by bad days and eventually the bad days will go away.

Many of us also dealt with a bout of depression so be on the lookout.

Many of us also suffered what is called Hypothyroidism where the thyroid is basically burnt out by the scatter or direct radiation and for some reason it doesn't crap out until months post Tx. If your not familiar with the symptoms just look it up.

Make sure he gets a good amount of calories now and for the next year or so. I tell people 3000 calories a day and don't worry about weight gain, as it just doesn't happen.

Tell him not to get discouraged. Tell him that just about everything will return to normal but it may take a lot longer than you both want it to.

You need to congratulate yourself but at the same time realize that this ordeal is only partially over as the recovery can take a long time. The sooner you can both get adjusted to this new normal life, the better.




David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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