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Location: Los Angeles>Little Rock>Houston>Little Rock
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Hi! I am new here.
My husband has SNUC (sino-nasal undifferentiated carcinoma). He has been battling this since 2004. In 2008 he had major surgery removing his upper right jaw, the roof of his mouth, his teeth, his sinus,and his right orbital bone. His right eye is now supported by a titanium mesh sling. His face looks like it is caving in in several places, but it doesn't bother me.
There was major reconstruction surgery done which involved tissue and veins from his legs harvested and implanted in his face and they even created a new roof of his mouth! All in all it was over 17 hours of surgery and microsurgery.
After the surgery there were months of chemo and healing and everything seemed to be ok. Scans were done every 3 months and all was well.
In the last few weeks he has been noticing some swelling and it is bothersome. A new scan was scheduled and according to his surgeon, there is "something there" that needs to be looked at. A biopsy is scheduled for Monday, 11/7. We have to be there (MD Anderson) at 5:30 AM.
I have this feeling of dread. Please make it be ok. This would be the 3rd recurrence if the results are not good. That is bad news.
My husband has SNUC (sino-nasal undifferentiated carcinoma). He has been battling this since 2004. In 2008 he had major surgery removing his upper right jaw, the roof of his mouth, his teeth, his sinus,and his right orbital bone. His right eye is now supported by a titanium mesh sling. His face looks like it is caving in in several places, but it doesn't bother me.
There was major reconstruction surgery done which involved tissue and veins from his legs harvested and implanted in his face and they even created a new roof of his mouth! All in all it was over 17 hours of surgery and microsurgery.
After the surgery there were months of chemo and healing and everything seemed to be ok. Scans were done every 3 months and all was well.
In the last few weeks he has been noticing some swelling and it is bothersome. A new scan was scheduled and according to his surgeon, there is "something there" that needs to be looked at. A biopsy is scheduled for Monday, 11/7. We have to be there (MD Anderson) at 5:30 AM.
I have this feeling of dread. Please make it be ok. This would be the 3rd recurrence if the results are not good. That is bad news.
One day in my fall semester of my senior year of college (October 8th, 2009) - when I was applying for graduate school and planning on studying abroad in Ecuador for my final semester - I had a "grand mal" (generalized tonic-clonic) seizure right before class began. I had never had one before, so it was a major surprise and shock to everybody around me. An MRI two days later (October 10th, 2009) showed a "large contrast-enhancing lesion, suspicious for astrocytoma" in my left frontal lobe. I was sent to Minneapolis, as the neurosurgeons in Duluth did not operate on eloquent portions of the human brain, and if any part was "eloquent" (responsible for functions), this was it.
On October 20th, 2009, my head went under the knife. It indeed was a tumor, and because these kinds of tumors tend to infiltrate the brain, only 80% of it could be removed. The surgery left me temporarily disabled - I could barely move the right side of my body (and my right hand was totally paralyzed), nor could I form complete sentences or name simple objects ("aphasia") after the operation. Otherwise, I recovered swiftly and was discharged from the hospital on the 23rd.
The final pathology report was in by late October, and it called it a WHO Grade II oligodendroglioma. Oligodendrogliomas, oligoastrocytomas (mixed glioma), astrocytomas, and glioblastoma multiformes, are all part of the "glioma" family, which are speculated to arise from the glial cells (support system for neurons) of the brain. A low-grade oligodendroglioma is about the best glioma to have (other than some primarily pediatric tumors), although mine had a feature suggestive of a more anaplastic tumor - endovascular proliferation (indicative of the tumor "sprouting" its own blood vessels to provide it with more nutrition). Nonetheless, they called it a grade II. I received speech, occupational, and physical therapy, and returned to school about a month after my operation.
We were supposed to follow up with a neuro-oncologist in Minneapolis two weeks later, but I made the stupid decision of receiving treatment locally. What I got was a "hematologist-oncologist" who recommended observation, and scheduled a follow-up MRI three months later. I became increasingly uncomfortable and decided to re-transfer treatment to Minneapolis, where the doctor, wary of the endovascular proliferation, contrast enhancement caused by leaky blood vessels, and probable crossing of the mid-line put me on Temodar chemotherapy.
Temodar is one of the more benign chemotherapy regimens, having little effect other than nausea and fatigue on certain days during the cycle. I would have MRIs every two months to see how it is working. I completed the full round of twelve cycles. In the meantime, I had several non-tumor related personal and family problems in my life. My brother was an out-of-control prescription drug addict, our house burnt down, and our family business of 20 years failed. I graduated from college, on time, during this period, as well as went alone on a trip to Mexico shortly after I finished chemotherapy. I returned to find my car impounded, and shortly after several things of value, which I had anticipated to shore me over until I found a job, were stolen from me.
I sunk into a deep depression, but began my job search anyway. I then fully realized that being a young cancer patient has its own unique challenges. Besides the obvious social issues, my case presents a health insurance quagmire that illustrates the inefficiency of the American health insurance system. To stay on my current health insurance, "Medical Assistance" (Medicare) would require that I take a very low-paying, part-time job - and even many of those have too high of an income. MinnesotaCare, which is funded by a combination of state subsidies and user premiums, considers those who could otherwise get health insurance through their employer ineligible, and they have fairly strict income guidelines as well - and it does not cover much in inpatient hospital expenses. The state's high-risk health care plan would cost me $10,000 in out-of-pocket costs and premiums alone, and I am not sure, nor have I been provided with a clear answer from the Department of Labor, whether pre-existing conditions would be covered should I get commercial health insurance. It is a sad reflection on our society how the best option for youth with chronic or terminal medical conditions is often to stay unemployed or work a menial job and collect government benefits.
On September 19th, a routine MRI showed two spots of enhancement that did not appear in the previous MRI. I went in for another MRI, this time with perfusion (a technique for measuring blood volume and flow), and while the spots were still there, they had not grown and showed no difference in blood uptake from equivalent zones in the contralateral hemisphere. On November 3rd, I was offered a part-time night-shift job unloading trucks and stacking shelves at Target, which I will be starting in roughly a week. A waste of intelligence and education? Indeed. Necessary? Also yes.
When it comes down to what caused Cancer...many different opinions for sure.
Some may think it's a persons diet or lfestyle going wrong...further from the truth.
My mother born in Europe (Hungary) always cooked fresh made meals in the kitchen and never touched frozen foods etc untill in her later yrs before passing from brain Cancer at 80. A double Mastectomy (Cancer) was done prior to her brain issue.
My dad also of Hungarian parents who were born in Hungary so we always ate specific traditional foods. Dad had bladder/prostate Cancer with subsequent removal and passed away due to renal failure at age 86.
Me...on the other hand had Thyroid Cancer a few yrs ago and it was removed. Today also have bladder/prostate problems...maybe heredity...not sure.
I do eat a variety of foods both good and bad for me. Am 80 today so am not too worried for the coming yrs ahead. Otherwise NO complaints.
My late wife had numerous Cancer tumors and passed away within 5 months of the discovery.
Oldest daughter passed away three yrs ago with breast Cancer.
What can a person say considering that we are all eating the same foods both fresh or frozen that is available on the open mkt.
That Imp looks like tons of fun! Hubby thinks it would make a great cake (cattle feed) wagon! Here's a video of Blue and I. Blue is my husbands retired ranch horse. We aren't the fastest, but we're doing it anyway.
The Imp got a lot of miles hauling freight on it! Course it beat the heck out of me on the trails, rides like a buck board!
That actually looks like fun! I'd fall off the horse before it got out of the gate though!
It is amazing how much therapy one can get even from a simple "non" hobby when getting treatments.
When I was going in for my daily radiation treatments, they had a Jigsaw puzzle laid out on the table. I never was a real nut for the puzzles, but started to put pieces in while getting ready for my turn at the radiation treatments. Got to where it was really fun, considering I was starting to look like a zombie and felt even worse at the time!
I was starting to go in early just to put a few of the pieces in place as a highlight to my day. After the treatments and getting dressed, I would again put a few pieces in and chat with the others that were waiting for their treatments.
Basically if you are going though any kind of treatments or waiting for them, I would suggest doing something that makes you smile and is entertaining verses just waiting, and even the most simple things can bring a smile.
One day in my fall semester of my senior year of college (October 8th, 2009) - when I was applying for graduate school and planning on studying abroad in Ecuador for my final semester - I had a "grand mal" (generalized tonic-clonic) seizure right before class began. I had never had one before, so it was a major surprise and shock to everybody around me. An MRI two days later (October 10th, 2009) showed a "large contrast-enhancing lesion, suspicious for astrocytoma" in my left frontal lobe. I was sent to Minneapolis, as the neurosurgeons in Duluth did not operate on eloquent portions of the human brain, and if any part was "eloquent" (responsible for functions), this was it.
On October 20th, 2009, my head went under the knife. It indeed was a tumor, and because these kinds of tumors tend to infiltrate the brain, only 80% of it could be removed. The surgery left me temporarily disabled - I could barely move the right side of my body (and my right hand was totally paralyzed), nor could I form complete sentences or name simple objects ("aphasia") after the operation. Otherwise, I recovered swiftly and was discharged from the hospital on the 23rd.
The final pathology report was in by late October, and it called it a WHO Grade II oligodendroglioma. Oligodendrogliomas, oligoastrocytomas (mixed glioma), astrocytomas, and glioblastoma multiformes, are all part of the "glioma" family, which are speculated to arise from the glial cells (support system for neurons) of the brain. A low-grade oligodendroglioma is about the best glioma to have (other than some primarily pediatric tumors), although mine had a feature suggestive of a more anaplastic tumor - endovascular proliferation (indicative of the tumor "sprouting" its own blood vessels to provide it with more nutrition). Nonetheless, they called it a grade II. I received speech, occupational, and physical therapy, and returned to school about a month after my operation.
We were supposed to follow up with a neuro-oncologist in Minneapolis two weeks later, but I made the stupid decision of receiving treatment locally. What I got was a "hematologist-oncologist" who recommended observation, and scheduled a follow-up MRI three months later. I became increasingly uncomfortable and decided to re-transfer treatment to Minneapolis, where the doctor, wary of the endovascular proliferation, contrast enhancement caused by leaky blood vessels, and probable crossing of the mid-line put me on Temodar chemotherapy.
Temodar is one of the more benign chemotherapy regimens, having little effect other than nausea and fatigue on certain days during the cycle. I would have MRIs every two months to see how it is working. I completed the full round of twelve cycles. In the meantime, I had several non-tumor related personal and family problems in my life. My brother was an out-of-control prescription drug addict, our house burnt down, and our family business of 20 years failed. I graduated from college, on time, during this period, as well as went alone on a trip to Mexico shortly after I finished chemotherapy. I returned to find my car impounded, and shortly after several things of value, which I had anticipated to shore me over until I found a job, were stolen from me.
I sunk into a deep depression, but began my job search anyway. I then fully realized that being a young cancer patient has its own unique challenges. Besides the obvious social issues, my case presents a health insurance quagmire that illustrates the inefficiency of the American health insurance system. To stay on my current health insurance, "Medical Assistance" (Medicare) would require that I take a very low-paying, part-time job - and even many of those have too high of an income. MinnesotaCare, which is funded by a combination of state subsidies and user premiums, considers those who could otherwise get health insurance through their employer ineligible, and they have fairly strict income guidelines as well - and it does not cover much in inpatient hospital expenses. The state's high-risk health care plan would cost me $10,000 in out-of-pocket costs and premiums alone, and I am not sure, nor have I been provided with a clear answer from the Department of Labor, whether pre-existing conditions would be covered should I get commercial health insurance. It is a sad reflection on our society how the best option for youth with chronic or terminal medical conditions is often to stay unemployed or work a menial job and collect government benefits.
On September 19th, a routine MRI showed two spots of enhancement that did not appear in the previous MRI. I went in for another MRI, this time with perfusion (a technique for measuring blood volume and flow), and while the spots were still there, they had not grown and showed no difference in blood uptake from equivalent zones in the contralateral hemisphere. On November 3rd, I was offered a part-time night-shift job unloading trucks and stacking shelves at Target, which I will be starting in roughly a week. A waste of intelligence and education? Indeed. Necessary? Also yes.
Well I wish you only the best! You may even be coming to a point of beating the issues.
As far as the job at Target, don't look at it as a "Waste of intelligence", look at it as a means to an end. You will be working a lot physically, and that will keep you in shape as well as take your mind off the issues.
You can still use the Intelligence to write a book about your experiances. I kept a diary, which everyone should do even if it is just to look back and see how you progressed both down and back up!
My husband has SNUC (sino-nasal undifferentiated carcinoma). He has been battling this since 2004. In 2008 he had major surgery removing his upper right jaw, the roof of his mouth, his teeth, his sinus,and his right orbital bone. His right eye is now supported by a titanium mesh sling. His face looks like it is caving in in several places, but it doesn't bother me.
There was major reconstruction surgery done which involved tissue and veins from his legs harvested and implanted in his face and they even created a new roof of his mouth! All in all it was over 17 hours of surgery and microsurgery.
After the surgery there were months of chemo and healing and everything seemed to be ok. Scans were done every 3 months and all was well.
In the last few weeks he has been noticing some swelling and it is bothersome. A new scan was scheduled and according to his surgeon, there is "something there" that needs to be looked at. A biopsy is scheduled for Monday, 11/7. We have to be there (MD Anderson) at 5:30 AM.
I have this feeling of dread. Please make it be ok. This would be the 3rd recurrence if the results are not good. That is bad news.
Wish us luck!
Any updates that you can share? Hope that the "Something there" was just an overstatement and it was swelling from other issues that were resolved already, and will go away!
"Hugs" at you regardless and your husband is fine!
Taking care of my dieing father at home when I was 18 was tramatic. It was a horrific and lingering process. The cancer eventually spread to every part of his body including his very finger tips...nursing him was my duty..but it broke my heart to see this man go this way..It still after all these years brings a tear to my eye.
What I did learn about cancer was that it usually results from prolonged stress. My dad was an old soldier who suffered a revolution and early seperation from his childhood family - Then he went directly into war...then - imprisonment - migration - immigration...it was one thing after the other.
I remember as he lay on the couch...He had so much pain he rolled over on to the floor...and knelt...then he uttered -"Who put this demon in me?"...Year later I thought about that phrase..It was the war - it was the hardness and difficulty of being a human being in an imperfect world....
Myself - I have done all the wrong things and by modern standards should have had cancer a hundred times...but - I learned from my fathers death - don't let the world destroy you - and NEVER make the decision that you have had enough and are ready to die...I feel that my dad...just gave up..and the cancer set in. Stress and evil are kin...manage it and have faith.
Location: Los Angeles>Little Rock>Houston>Little Rock
6,489 posts, read 8,820,291 times
Reputation: 17514
Quote:
Originally Posted by starlite9
Any updates that you can share? Hope that the "Something there" was just an overstatement and it was swelling from other issues that were resolved already, and will go away!
"Hugs" at you regardless and your husband is fine!
The surgeon saw a "mass" and took samples for pathology. We have a follow up appointment on 11/17. That is all we know so far. Thanks for asking!
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