Just diagnosed stage 4A

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RE: Just diagnosed stage 4A

by Sdurnell on Thu Mar 10, 2016 07:15 AM

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On Mar 10, 2016 4:28 AM enerill wrote:

On Feb 22, 2016 4:43 PM mark56 wrote:

Atta boy I'll be havin a nice can of ensure but I'll call it soup Mark

Please be aware that sugar feeds cancer, and Ensure is full of sugar.  I have throat cancer, had chemo & declined radiation (was approved for Proton Therapy), and am now on alternative therapies (several).  Have a lymph node involvement on my neck (left side) which came up after the 3rd round of chemo, but the chemo shrank the tumor on my epiglottis and the few lymph nodes that were involved.  I have drastically changed my diet, lost 35 pounds, feel great, except for low blood sugar (a side effect of the chemo...carboplastin & taxol combo at MD Anderson in Houston).  I beg all of my cancer compatriots to give up sugar, and to use stevia instead.  Organic fruits & veggis plus hormone free and non-GMO food.  I will have another scan in a couple of months (last chemo was Oct.15, 2015.

Anything you take in for nutrition feeds your cancer, just as it feeds the other cells in your body.  Cancer cells are just more efficient at using nutrients.  They will love the sugars/carbs in organic fruits, etc., just as much as those in candy.  Which is why we have surgery, chemo, and radiation to get rid of them when our immune systems fail to destroy them by themselves--as they have for all of us here.

I lost a little more weight--36#--and looked horribly emaciated and certainly didn't feel great.  But five years out I have regained all the weight I needed to and also my energy and health.  And not only that, the combination of susrgery and radiation has cured me of cancer completely.

RE: Just diagnosed stage 4A

by mark56 on Fri Mar 11, 2016 01:39 AM

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i think the fact might be "if you get it cancer,you get it"

If we were to look at our feeding habits No onw would have guessed id get the cancer card.over 15 years vegitarian .Fresh sqeezed juice daily ahnd nightly no gmo no persevitives ,additives.

Yet here i am.Syring ing Jevity into a tube in my belly.

so eat what you like in moderation,veggie or not 

fight the good fight push past the pain

be well ,feel well

good luck everyone

RE: Just diagnosed stage 4A

by driead on Fri Mar 11, 2016 03:13 AM

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I think diet influences some cancers more then others. If we look at hormone driven cancers like ovarian, breast, and prostate cancers for example, we know the treatments us hormone deprivation. So it would obviously make sense to cut back on hormone tainted and hormone producing foods and products. 

As for those of us that contracted HPV positive Squamous cell Carcinoma, obviously we know what caused our cancer but what caused our immune system to not destroy the cancerous cells obviously is a mystery. It seems to me if we need to feed our immune system to stave off future cancer cells. 

I researched all of the treatment options for HPV positive Squamous cell Carcinoma. I even got my second opinion from Dr Jatin P Shah, one of the leading head and neck cancer doctors in the world. What I learned and have been told suggests we have one of the most curable cancers and in most cases we are being over treated. With that said, after loosing my mom, dad, and youngest sister to hormone driven cancers, I decided to take no chances. Even though Dr Shah didn't recommend surgery, some research suggested a modified radical neck dissection could increase overall cure by as high as 10%. I personally just wanted the cancer physically removed from my body so I had the surgery. I also wanted the full 35 rounds of radiation to 70gry. Originally I was going to get 5FU along with the Cisplatin but was told I would not tolerate the combination so it was deleted. Bottom line is choosing the path that gives you the most confidence. I do believe I have made the best decisions I could with the information available. I am absolutely impressed with my medical team at Sarah Cannon Cancer Center and the treatment I am receiving. I can say I believe God has helped guide me in my journey.  I am comfortable knowing we have left no stone unturned in my path to being cured. I also am very thankful for all of the information and advice I have received here at Cancer Compass. I am praying for all of you.

RE: Just diagnosed stage 4A

by Dmacc on Sat Mar 19, 2016 11:48 PM

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Dreid your continued contribution to this site and similarity to my case inspired me to tell my story so people can continue to learn from our experiences. I was dianosised with Stage 4 Squamous cell Carcinoma, at the base of my tongue and from reading your account, it appears my treatment was much less aggressive than yours because of the surgery and Chemotherapy. 

I visited 3 hospitals for their recommendation of treatment. Cancer Center of American recommended chin splitting neck dissection non modified version, the other 2 recommended 33 rounds of radiation, and 7 weeks of chemo Cetuximab, a biological therapy and not a true form of chemo because my kidney would not tolerate Cisplatin. I chose the latter and was treated by one of the top doctors in the field Dr. Garden at MD Anderson in Houston. My last radiation treatment was October 7th 2016, I just completed my 2nd scan last week and by the grace of god I am cancer free. 

My treatment experience was brutal but sounds like a walk in the park compared to what I read in your post. I took pain meds Hydrocodone, through the 3rd week of radiation and that’s it, no feeding tube. I had a bad reaction to the chemo and broke out with pus filled bumps on my upper body that was similar to having the chicken pox, 7 weeks of misery. Found out that hard way that African American’s skin pigment absorbs the radiation rays instead of localize penetration at the point of entry and immediate skin lesions. My skin (neck) held up without a break throughout radiation and I was feeling blessed, 2 weeks later my skin peeled off like a snake leaving large open sores that took weeks to grow in. Because of the radiation absorption and scaring from the chemo my appearance is much different, from below my eyes to above my mask mark on my chest is much darker and pitted it appears to be permanent 

I said all that to say I feel extremely blessed and am happy with the treatment decision I made. Did I have concerns about not having the surgery up front and not being able to tolerate the Cisplatin, yes but the thought of recovery after having surgery which required your chin to be split and blowing out a kidney with the heavy chemo was too much for me. Difficult decisions to be sure, god bless all of you, you can beat this thing!

RE: Just diagnosed stage 4A

by driead on Sun Mar 20, 2016 02:37 AM

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On Mar 19, 2016 11:48 PM Dmacc wrote:

Dreid your continued contribution to this site and similarity to my case inspired me to tell my story so people can continue to learn from our experiences. I was dianosised with Stage 4 Squamous cell Carcinoma, at the base of my tongue and from reading your account, it appears my treatment was much less aggressive than yours because of the surgery and Chemotherapy. 

I visited 3 hospitals for their recommendation of treatment. Cancer Center of American recommended chin splitting neck dissection non modified version, the other 2 recommended 33 rounds of radiation, and 7 weeks of chemo Cetuximab, a biological therapy and not a true form of chemo because my kidney would not tolerate Cisplatin. I chose the latter and was treated by one of the top doctors in the field Dr. Garden at MD Anderson in Houston. My last radiation treatment was October 7th 2016, I just completed my 2nd scan last week and by the grace of god I am cancer free. 

My treatment experience was brutal but sounds like a walk in the park compared to what I read in your post. I took pain meds Hydrocodone, through the 3rd week of radiation and that’s it, no feeding tube. I had a bad reaction to the chemo and broke out with pus filled bumps on my upper body that was similar to having the chicken pox, 7 weeks of misery. Found out that hard way that African American’s skin pigment absorbs the radiation rays instead of localize penetration at the point of entry and immediate skin lesions. My skin (neck) held up without a break throughout radiation and I was feeling blessed, 2 weeks later my skin peeled off like a snake leaving large open sores that took weeks to grow in. Because of the radiation absorption and scaring from the chemo my appearance is much different, from below my eyes to above my mask mark on my chest is much darker and pitted it appears to be permanent 

I said all that to say I feel extremely blessed and am happy with the treatment decision I made. Did I have concerns about not having the surgery up front and not being able to tolerate the Cisplatin, yes but the thought of recovery after having surgery which required your chin to be split and blowing out a kidney with the heavy chemo was too much for me. Difficult decisions to be sure, god bless all of you, you can beat this thing!

Wow. That blisters sound terrible. So glad you made it. Praise God for you clear scan.

RE: Just diagnosed stage 4A

by driead on Sun Mar 20, 2016 03:12 AM

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8 more radiation treatments and 2 more chemotherapy treatments. One small treatment Monday and the final big treatment on the 28th.

We skipped 2 radiation treatments last week. They remapped the new mask. Sarah Cannon Cancer Center at Research Medical Center just installed a new state of the art linear accelerator to accommodate their plan to make Kansas City their new central research and treatment center for pancreatic cancer. The IMRT machine they have is only a few years old but apparently it isn't as good for pancreatic cancer.

Anyway all of that to say they mapped me on the new machine. Too cool! The older machine would take about 15 minutes to hit all 18 stations on my neck stopping 6 times as the leaves changed shapes and locations. The new machine doesn't stop it is n constant motion and I am off the table in 5 minutes or less. 

Now, with that said, I am still doing better in thr throat department then I was expecting. I am still able to eat Campbells Chicken Noodle soup. The outside isn't fairing as well. Even with using the Miaderm twice a day, limiting long showing my skin is trashed. Luckily, because of the surgery, I have no feeling from the center of my chin to behind my left ear down to my chest and cross my shoulder. Supposedly it will return over time. But at the moment it is serving me well. I have an area, 3 inches square, where the skin has become an oozing mess. I am using the sterile Mediplex absorbent pads. They fill up and you change them out. I can't imagine how much that would hurt. My right side is much smaller and not as bad. 3/4 inch by 3 inches and not oozing. I am treating it with pure vitamin e oil and it is doing better. 

Because thrush is a constant threat, I am still brushing my teeth softly with soda several times a day, keeping soda & salt water with me so I can swish and swallow as needed. Magic mouthwash as needed. So far so good. 

Big question is how much worse does it get during the last radiation week and how long does it continue after radiation? I keep hearing the damage continues for a month after treatment! 

Thank you all for being here to help. I thank God for all of you and pray we all get to be cured. 

RE: Just diagnosed stage 4A

by SameJourney on Mon Mar 21, 2016 03:39 AM

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Dear driead, you are SO close to finishing treatment!!! It has been a hard one, to say the least! You experienced so much more than my husband did. It was a year ago yesterday that my husband had his tonsillectomy and rad. neck surgery...we reflected and thanked the Lord for bringing him through that as well as the chemo/rad. trtmts. Answer to your question....it was not easy .....as the other posters said, your throat cooks post treatment for several weeks. As mentioned, use the narcotics; sleep as much as you can. As we know, "I can do ALL things through Christ, who strengthens me." Look how far you have come (sprinkled with glints of humor). You are a survivor! Hang in there!

RE: Just diagnosed stage 4A

by Cardoza33 on Mon Mar 21, 2016 04:51 AM

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Hey there,

Tuesday I will be 7 weeks out of treatment.  On the one hand, it is much better in that you do not have to do all the daily treatment crap.  As far as my experience, people are very right, you continue to cook for weeks.  I repeatedly read on here 4-8 weeks, as I wonder if this is ever going to end...  I can say just in the last few days do I feel like my mouth is improving noticeably.  So  I would say that information is pretty darn accurate.  My neck healed pretty well within about 2 weeks.  I was given silverdeen or something like that.  It was a miracle worker.  the mouth pain got worse and I just didn't feel good and fatigued.  For me, I have been vomitting for no known reason, which has been the worst.  Each of those symptoms have ever so slightly improved.  For me, its the sitting around everyday that is really taxing me mentally.  I have small children running around and really can not wait to be back on my feet full speed.  I have heard stories of people bouncing back quicker and a friend of mine who went through this 2 years ago, it took much longer for him.  I read that it didn't end immediately after radiation, but I thought I would heal faster than most because I am relatively young and was in great shape before diagnosed.  didn't matter.  it takes as long as it takes, you can do it, just get you mind ready to not have any expectations of when exactly that will be. Good luck.  You are almost done with treatment, that is huge.  I'm focusing on May when I get my scan.  Wishing we all are cured in the end.  Hang it there.  Tony

RE: Just diagnosed stage 4A

by driead on Mon Mar 21, 2016 04:56 AM

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On Mar 21, 2016 3:39 AM SameJourney wrote:

Dear driead, you are SO close to finishing treatment!!! It has been a hard one, to say the least! You experienced so much more than my husband did. It was a year ago yesterday that my husband had his tonsillectomy and rad. neck surgery...we reflected and thanked the Lord for bringing him through that as well as the chemo/rad. trtmts. Answer to your question....it was not easy .....as the other posters said, your throat cooks post treatment for several weeks. As mentioned, use the narcotics; sleep as much as you can. As we know, "I can do ALL things through Christ, who strengthens me." Look how far you have come (sprinkled with glints of humor). You are a survivor! Hang in there!

Thank you 

RE: Just diagnosed stage 4A

by driead on Mon Mar 21, 2016 05:04 AM

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On Mar 21, 2016 4:51 AM Cardoza33 wrote:

Hey there,

Tuesday I will be 7 weeks out of treatment.  On the one hand, it is much better in that you do not have to do all the daily treatment crap.  As far as my experience, people are very right, you continue to cook for weeks.  I repeatedly read on here 4-8 weeks, as I wonder if this is ever going to end...  I can say just in the last few days do I feel like my mouth is improving noticeably.  So  I would say that information is pretty darn accurate.  My neck healed pretty well within about 2 weeks.  I was given silverdeen or something like that.  It was a miracle worker.  the mouth pain got worse and I just didn't feel good and fatigued.  For me, I have been vomitting for no known reason, which has been the worst.  Each of those symptoms have ever so slightly improved.  For me, its the sitting around everyday that is really taxing me mentally.  I have small children running around and really can not wait to be back on my feet full speed.  I have heard stories of people bouncing back quicker and a friend of mine who went through this 2 years ago, it took much longer for him.  I read that it didn't end immediately after radiation, but I thought I would heal faster than most because I am relatively young and was in great shape before diagnosed.  didn't matter.  it takes as long as it takes, you can do it, just get you mind ready to not have any expectations of when exactly that will be. Good luck.  You are almost done with treatment, that is huge.  I'm focusing on May when I get my scan.  Wishing we all are cured in the end.  Hang it there.  Tony

Thank you 

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