Advice needed soon

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Advice needed soon

by PH0628 on Mon Oct 12, 2009 12:00 AM

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Hi. I had a rare malignant tumor removed from my sinus/nasal area back on  9/15/09 at Memorial Hermann Hospital in Houston. The name of my cancer is Sinonasal Undifferentiated Carcinoma. I was misdignosised 6 weeks prior to surgery in my small town of Lake Jackson, TX. I kept being treated for a sinus infection even though the CT scan clearly showed severe blockage. I got a second opinion and it was finally determined to be a tumor. Long story short, tumor was successfully removed. Pathology report stated the margins were negative but not 100%. So, now I'm being referred to a Radiation Oncologist and a Chemotherapy Doctor. Radiation Doctor is wanting to do 2 treatments a day instead of 1 for 5 days a week for 7 weeks total. He is concern about my sight, hearing and my personality. Tumor was basically peeled off my brain lining and the bone of my left eye. My entire nasal septum was removed. I have no sense of smell. Doctor states that radiation may impair my vision due to tumor being close to left optic nerve and that I will have dry mouth and probably dry eyes for the rest of my life. My chemo doctor is wanting to use the following 2 drugs on me : Cisplatin & maybe Paclitaxel. Chemo will be 1 day a week for about 3-4 hr each session. I'm being told that my treatment plan is aggressive due to this type of tumor being aggressive. Tumor basically doubled in sizes in 2 weeks before surgery. Doctors are also concern about my mother driving me back and forth to Houston twice a day for radiation treatment so they may change it to one. Doctors believe that the  1 hr drive each way will be too much on my body. Can anyone give me any information on these 2 chemo drugs, radiation treatment and side effects? I hard Cispaltin is a very bad drug and dry mouth & eyes will be difficult. I'm 44 yrs old and scared to death to go through this tough treatment regimen. Oh, I was also told that accupunture may help with side effects. Is this true?

RE: Advice needed soon

by Scoopie on Mon Oct 12, 2009 12:00 AM

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So sorry for your situation...it is so overwhelming, I'm sure.  The only thing I can suggest is to check out M.D. Anderson & see if possibly you're situation is suitable for proton therapy since there is concern about rad tx to brain, etc.   I hope you find the answers you need to proceed toward a speedy recovery.

Blessings to you,

DT

 

RE: Advice needed soon

by SharonP on Tue Oct 13, 2009 12:00 AM

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Hi, Really sorry to hear about your recent diagnosis - I was diagnosed with melanoma in the lymph nodes while 37 weeks pregnant. I had 38 lymph nodes removed, then radiation to the neck area (from the ear down the neck and shoulder area). I had 4 weeks of daily radiation. I was told that I might lose my taste and have dry mouth permanently. They gave me the lowest beneficial dose to try to preserve my saliva gland. Radiation was pretty tough after about 3 weeks. I dropped 8kg in one week, lots of throwing up, very sore throat, ear ache, awful metal / salty taste in my mouth. I was tired, but I am not sure if that was from radiation therapy or getting up to a 7 week old baby several times a night! I had a 40 min drive in to the hospital each day and it did get a bit tiring, but I had a roster of friends driving me and the baby in so it was good catch up time. Maxalon helped with the vomiting and three weeks after my last treatment, my taste is coming back, my throat is no longer sore and my saliva is back to normal. I guess what I am trying to say is, the side effects aren't always permanent and not everyone gets the side effects. There is some stuff you can get for dry mouth (artificial saliva) and dry eyes. I hope what ever treatment you choose works well for you and you make a speedy recovery. Sharon

RE: Advice needed soon

by steph_rn on Tue Oct 13, 2009 12:00 AM

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Sounds like they have thorwn everything at you except the kitchen sink!!!! Really think you need another opinion.........I agree that you should go to MD Anderson.  They are supposed to be fantastic....please give them a chance if you can!!!  Best of luck!

Steph

RE: Advice needed soon

by Defjoeb on Tue Oct 13, 2009 12:00 AM

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So sorry to hear of your diagnosis. There are many SNUC patients who have posted on this board so if you search through their posts you may find some useful info. Probably 90% or more of the patients here have had the treatment you are being prescribed or at least a similar one. Saying it's tough is an understatement, or at least it was for me. The one thing to remember is that it is doable and you will get through it.

I went through the treatment 4 years ago for Stage IV SCC in the tonsil with lymph node involvement (T1N3M0). I had the 35 IMRT sessions and was administered Cisplatin and 5-FU. I can tell you that Cisplatin is a very nasty agent. The short term side effects are nausea (I should have capitalized that) and more nausea. They have some pretty good drugs to control that and some folks find that it isn't a problem at all. The nausea hits the day after infusion and only lasts a couple of days. The long term effects can be kidney damage (make sure they give you a diuretic, drink plenty of water, and it shouldn't be an issue), and hearing loss (not too bad). I don't know about that other drug so I really can't comment on it. The radiation for me was the worst. Just make sure you ask for and use an ointment on your skin and take any pain meds before the pain starts.  It's going to exhaust you so 2 a day with that kind of driving will certainly be tough.

I know this all sounds absolutely terrible and frightening to you. I won't lie, it isn't fun, but like I said, you will get through it. Actually you are probably going through the worst part right now, the fear of the unknown. Once treatment starts you will switch into corrective mode and will feel as though you are actively tackling the problem You will surprise yourself with your resilience and find a strength you never knew you had. Before you know it you will be in the same boat I'm in and it will all be just a fuzzy memory. Most folks come out of this a better person with a greater appreciation of everything. To be honest I don't think I would have changed a thing. 

Stay in touch on this board. You will find some great tips for handling the treatment and a lot of sympathetic ears to listen. When you are done you can pay it forward and help other newbies. Just hang in there...it'll be OK!

Good Luck!

Joe

RE: Advice needed soon

by scootie45 on Tue Oct 13, 2009 12:00 AM

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I am so sorry to hear of your diagnosis.  Yes, you do have a rough road ahead of you, but this cancer can be defeated.  My husband was diagnosed with SNUC of the maxillary sinus in 1/08.  He too was treated for a sinus infection for almost 2 months before the SNUC diagnosis was made.

He was fortunate not to have surgery, but had 39 IMRT radiation treatments-they were done daily for 5 days a week along with 3 rounds of Cisplatin and 5FU.  The nausea was severe-he used Zofran and ultimately found Emend to be the most helpful, but it was bad.  He also had severe mouth sores, to the point he was only able to swallow ice chips.  He lost nearly 50 lbs. and had a PEG/PEJ tube inserted.  You will definitely need a feeding tube-get it inserted before the treatments start.

There is loss of smell, taste, extreme dry mouth, heavy mucus production from the radiation, dry eye and vision problems, and burns from the radiation.

But 18 months later-my husband is cancer free.  His 18 month PET scan was clean!-he has kept the weight off, is getting some taste and smell back. Will be having surgery on his eye to repair some of the damage.  Life will never be the same and the fear of reoccurance always hangs over you, as my husband says-he is still vertical!!!  Life does go on.

Our thoughts and prayers are with you.

Kathy

RE: Advice needed soon

by ErthWlkr on Wed Oct 14, 2009 12:00 AM

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My story is similar although I was diagnosed in Sept 2007 with a nasopharyngeal tumor in my left sphenoid sinus. Surgery wasn't an option because of the difficult position of the tumor which had also invaded my basal skull. An ENT doc had also treated me for sinus infection for 6 weeks with Levaquin and ultimately performed surgery. But found no infection and missed the tumor. It was a second ENT surgeon who discovered the tumor.

I was on 6 weeks radiation - 4 weeks once a day, 2 weeks twice a day. Also had 2 rounds of cisplatin. One round on the first day of radiation, 2nd round about 3 weeks in. I also had a PEG tube inserted on my first day of treatment which ended up being the only route for nutrition since the inflammation from the radiation made swallowing too painful.

Regarding pain - for me, it was a nominal issue. I was given pain meds to take but rarely used them. My doc was mystified and wondered whether I was genuinely not in pain or I just wasn't complaining. Told him I was both! I did use a hydrocodone liquid to help me sleep.

As far as driving to treatments, the way that I read your message was that your mother was diriving you in and it was an hour drive. My treatment center (Beth Israel, NYC) was also an hour drive from where I lived in the suburbs. My son drove me in for 4 weeks, once a day. No problem - I just slept in the car. For two weeks the hospital set me up in a nearby apartment so I could just walk one block to treatment. That was just a matter of convenience since I was being treated twice a day and wouldn't have to commute every morning and afternoon.

There was concern about my vision - since the tumor was in the vicinity of my optic nerve - and also memory loss. I suffered neither.

The radiation will cause inflammation and, depending on the target area, will cause some discomfort. I'm not saying pain because I didn't have any - but as my doctor described it, felt like the worst cold I'd ever had in my life.

My sinuses were stuffed and I used nasal rinses several times a day to clear out mucus and help me breath. Took about 6 weeks post-treatment before my breathing started to clear.

Couldn't eat solid food for about two months following treatment and relied on PEG tube. Lost about 45 lbs. Relied on canned liquid nutrient supplied by hospital. Gradually came back to a regular diet but took several months.

Dry mouth is an issue but used Biotene toothpaste and mouth wash. Also kept taking sips of water when I could.

When I began eating solids again, I relied on scrambled or fried eggs and soupy stews.

 Dryness is still an ongoing problem and will most likely be chronic. But only bothers me when I'm in the gym or working around the house when laboring and breathing thru my mouth. I just keep bottled water handy.

My docs warned me that I would lose my sense of taste and some people do.  That didn't happen to me. I did become hypersensitive to certain flavors, especially chocolate for some reason. The only sense that seemed compromised - not lost - was sweetness. Found this out totally by accident when I was looking for a container of sugar. Found two - one was salt, one was sugar. They weren't marked so I had to taste them. The salt was no problem - the sugar just tasted like sand in my mouth. 

My sense of taste is fine now - and I can enjoy chocolate again!

When undergoing treatment - and for a few months after - you'll be severely fatigued. Twice a day treatments will really beat you up.You'll want to sleep most of the time. Just listen to your body - sleep is a restorative and is part of the way the body cures itself. But eventually your energy level will come up. But two years down the road, I still fight fatigue int he afternoon. I'm trying to work that out with my docs now and might end up on a hormone supplement. Don't know at this point whether it's age related (I'm 58) or there might have been some collateral damage to my pituitary gland.

As far as acupuncture goes, there is some anecdotal evidence it's helpful but didn't work for me. In fact, I was overly sensitive to the needles and was more bothered by that. May have just been my anxiety level or my sensitivities changed.

There are some common side effects to this type of treatment but their severity and even appearance will be unique to you. You will get thru it. I won't downplay the difficulty but you'll adapt.Do your best to keep up your hydration - VERY IMPORTANT - and nutrition. You'll lose weight but do your best to keep it to a minimum. 

Seek out counsel when you need it. Family and friends, contact with the outside world, and determination to get better will be critical to your recovery. Stay in touch with your docs and don't hesitate to call them with concerns. 

As far as second opinion, it might not be a bad idea. Different physicians change their approach based upon what they've seen in their own patient population. Find the most experienced. And above all, you must feel comfortable and safe in their hands. If not, find another doctor. They are going to be your "family" for the next few months - from the doctors, to the PAs, to the nurses, to the receptionist who takes your calls.

And always have someone in the room with you taking notes when you have followups with your doctors. 

My very best wishes for you, and easy treatment, a quick recovery. Please write again if you have any further concerns.

- Jeff

RE: Advice needed soon

by rick51 on Wed Oct 14, 2009 12:00 AM

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You are in Houston. Please go to MDA as others have suggested for at least a second opinion. Ask to see Dr. Kupferman. AWESOME DR.

 

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