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cheyennemoon's Message Board Messages

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On Mar 12, 2016 10:29 PM butler wrote:

Yes I do have pain but on both sides in shoulders. PT isn't working so I'm paying for a massage. Can't take anything for pain and disability doesn't pay for acupuncture.
Ok thank you. I am sorry you are in pain as well but I find comfort in knowing I am not the only one. I have done apt, massage, and accupuncture. So far no relief. I will let you know if I find some method of relief. Cheyenne
I have a question? Does any one suffer from muscular pain on their radiated side?

On Mar 09, 2016 4:58 PM JEYEREH wrote:

On Mar 09, 2016 4:14 PM hisprincesstoo wrote:

yes, the waiting is horrible.  When I got to my decision point, then, it seemed like it took forever to get it moving.  before I let them know I was still making my decision, they were moving at record speed!  

I got to the point that I quit looking for information, and just released it.  The overwhelm was getting tooo much to handle.  I concentrated then on tasks, and how I was going to survive.  One of the things I worked on then was a CD of worship music. I picked out relaxing healing songs to listen to so I could keep calm.  Today even I still listen to it.  I also did my living will n stuff including a power of attorney for my son who became my primary caregiver, and involved in all decisions.  Perhaps you can discuss such things so you will be that primary caregiver.  You will also need a support team put together to help you thru as the primary caregiver.

Lord be with you both.

Thank you for answering so quickly.  My husband never has and probably never will discuss the (bad stuff), (death-funeral-burial) things like that.  I'm not sure if that is what you are talking about.  Through the years when I broach the subject he says he doesn't want to discuss it.  I bought our cemetary plots years ago and he knows about that.  I guess some people just don't want to discuss it.  It puts a heavy burden on me for sure.  He has adult children from another marriage who add many, many gray hairs to my hear.  Although we have been married for 15 years I am treated and condemned as the wicked stepmother.  Thankfully, the daughter lives out of state and has her own family.  Young people these days just don't get it.  He has a daughter and a son and they think they know everything, all young people think they know more than the doctors and they question me in every way, they have made themselves comfortable with disrespecting me.  Perhaps things will change I'm not sure.  I will be the primary care giver of my husband and do anything and everything to make sure he is ok.  We are people of faith and I will lean on that every minute of our walk.  God brought us to this and God will walk with us all the way.  My husband looks to me for EVERYTHING, the appointments, the prescriptions, the correspondence, everything.  I'm praying that the Lord keep my mouth shut when it comes to his kids.  Perhaps this will bring everyone together.  I don't work, my husband afforded me the luxury of not having to work, so like just the other day, one family member asked him if I was going to go back to work.  I think they need to concetrate on supporting him emotionally instead of trying to pick me apart.  This is going to become very hard for both of us.

This journey will have a profound effect in both of you. Like I said before my surgery was after the chemo and radiation. The freight train you are now on will continue you to race down the track. My cancer started on tonsil, went to base of tongue then lymph node. My ENT put me on that freight train and within a month I was in treatment. God speed and many prayers. Cheyenne

On Mar 09, 2016 12:53 AM CheyenneMoon wrote:

On Mar 08, 2016 11:10 PM hisprincesstoo wrote:

great to hear you back and that you are doing so well cheyenne.  I also had trouble with the feeding tube and needed it out, but I ended up drinking the formula ( jevity mixed 3: 1 with ensure plus) for the longest time, and am just now being able to eat enough to mostly get off the formula.

What did you end up doing with your mask?  I have mine as a trophy of victory in my living room.  lol  Who would have thought that one?  That one did take me a bit, but I knew to have my son keep it outa my sight til I asked for it.

You have to get over the fear of eating. Quit using the tube because it's easy. If something smells good, take a bite, chew it well and drink water. I was so freaked out about not ever being to eat again I forced myself to start. I choked plenty of times, got scared but kept doing it. I can even eat steak if it is tender or medium rare. I don't eat it often though. You have to conquer the fear in your mind about eating. I still struggle with saliva problems so I drink water all the time. The mask is in the shed. I will probably end up using it for target practice. Much love Cheyenne At the moment I am eating extremely spicy Mexican food.??
Oops sorry. I was so busy eating I glossed iver the part where you were eating again. Yay!! I love spicy food so I eat it every chance I get so my mouth gets used to it.

On Mar 08, 2016 11:10 PM hisprincesstoo wrote:

great to hear you back and that you are doing so well cheyenne.  I also had trouble with the feeding tube and needed it out, but I ended up drinking the formula ( jevity mixed 3: 1 with ensure plus) for the longest time, and am just now being able to eat enough to mostly get off the formula.

What did you end up doing with your mask?  I have mine as a trophy of victory in my living room.  lol  Who would have thought that one?  That one did take me a bit, but I knew to have my son keep it outa my sight til I asked for it.

You have to get over the fear of eating. Quit using the tube because it's easy. If something smells good, take a bite, chew it well and drink water. I was so freaked out about not ever being to eat again I forced myself to start. I choked plenty of times, got scared but kept doing it. I can even eat steak if it is tender or medium rare. I don't eat it often though. You have to conquer the fear in your mind about eating. I still struggle with saliva problems so I drink water all the time. The mask is in the shed. I will probably end up using it for target practice. Much love Cheyenne At the moment I am eating extremely spicy Mexican food.??

On Mar 08, 2016 5:16 PM Shereeclint wrote:

On Mar 08, 2016 4:28 PM CheyenneMoon wrote:

On Mar 07, 2016 1:48 AM JEYEREH wrote:

Hi---This is brand new for us.  Husband diagnosed with throat cancer and the HPV.  We're just trying to put one foot in front of the other.  Saw Oncologist on Friday March 4, 2016.  He said stage 4 cancer in left tonsil and lymph nodes.  Has appt this Wednesday with ENT doctor who wants to take tonsils and lymp nodes out.  The oncologist wants chemp and radiation but ENT wants tonsils out.  What path are we suspossed to follow???  One says one things, the other says another thing!!!!  I know this is the start of a very, very long journey. We don't know anything for sure except for throat cancer stage 4. Any advice would be appreciated. thank You!!!

Hi, Sorry to hear of your diagnosis. I have had both chem/radiation and a left neck dissection. If I were you I would go with the chemo/ radiation first and if that doesn't kill it all then the neck dissection. Cancer is a beast! The treatments are harsh. Don't let anyone sugar coat it. I too had stage 4, started on tonsils went to base of tongue and involved a lymph node. My ENT put me in touch with the oncologist. I did 6 rounds of chemo and 36 radiations. If my lymph node had acted like everyone else's I would not have needed the neck dissection. I am 1 year and 3 months out of treatment and a year and 1 month from my neck surgery. Arm yourself with as much information as you can. Each of us are individuals and we all handle our treatments differently. When you are done with treatment, your mind can become your biggest obstacle. I went with a peg tube and still lost 20 lbs. I have undergone speech and physical therapy due to the surgery. Please don't bury your head in the sand, prepare for worse case scenarios and when they don't happen it will be wonderful. You are fighting one if the biggest battles if your life. Arm yourself with knowledge and slay the beast that stands before you. I send love and warmth your way. Prayers for you and your family. Glory be to God! Cheyenne

Hi Cheyenne,

“Surely goodness and mercy shall follow me all the days of my life, and I shall dwell in the house of the Lord FOREVER.” (emphasis mine).

I know you repeated that many times during those dark days so I thought you might get a smile seeing it in print. It is so nice to see you posting again. As you so aptly said, each case is different and so are our reactions. My brother, diagnosed in 2013, has moved on, however it is always there. Now he self-medicates with Rick Simpson’s oil, which seems to assist him with maintaining his weight. I am not promoting it, however it seems to be working for him. He lives in Oregon so legality issues do not apply.  

Thank you for coming back. It is a blessing when a survivor makes the effort to post since this is definitely a trial by fire. You have been blessed, however you already know that.

I wish you continued health and hopefully you can be a beacon of hope to those you touch. May our Lord Christ Jesus continue to use you for His Glory.

Clint

Hi Clint. Yes I repeated those exact words often. I am doing incredibly well. I had to conquer my mind about many things and it was a battle well fought. That being said, I pretty much eat whatever I want now. I have actually gotten to help a few others with their returning to food. I had no choice in my decision as the feeding tube formula was being rejected by my body. Yes there have been many dark times and the surgery was a set back. My doctors are astonished with the rate of my recovery. Everyday is beautiful and a reason to rejoice. Thank you for the welcome back. I tried to come back here a few times but would get freaked out and leave??. Cheyenne

On Mar 07, 2016 1:48 AM JEYEREH wrote:

Hi---This is brand new for us.  Husband diagnosed with throat cancer and the HPV.  We're just trying to put one foot in front of the other.  Saw Oncologist on Friday March 4, 2016.  He said stage 4 cancer in left tonsil and lymph nodes.  Has appt this Wednesday with ENT doctor who wants to take tonsils and lymp nodes out.  The oncologist wants chemp and radiation but ENT wants tonsils out.  What path are we suspossed to follow???  One says one things, the other says another thing!!!!  I know this is the start of a very, very long journey. We don't know anything for sure except for throat cancer stage 4. Any advice would be appreciated. thank You!!!

Hi, Sorry to hear of your diagnosis. I have had both chem/radiation and a left neck dissection. If I were you I would go with the chemo/ radiation first and if that doesn't kill it all then the neck dissection. Cancer is a beast! The treatments are harsh. Don't let anyone sugar coat it. I too had stage 4, started on tonsils went to base of tongue and involved a lymph node. My ENT put me in touch with the oncologist. I did 6 rounds of chemo and 36 radiations. If my lymph node had acted like everyone else's I would not have needed the neck dissection. I am 1 year and 3 months out of treatment and a year and 1 month from my neck surgery. Arm yourself with as much information as you can. Each of us are individuals and we all handle our treatments differently. When you are done with treatment, your mind can become your biggest obstacle. I went with a peg tube and still lost 20 lbs. I have undergone speech and physical therapy due to the surgery. Please don't bury your head in the sand, prepare for worse case scenarios and when they don't happen it will be wonderful. You are fighting one if the biggest battles if your life. Arm yourself with knowledge and slay the beast that stands before you. I send love and warmth your way. Prayers for you and your family. Glory be to God! Cheyenne
I am in my third month out from 6 chemo and 36 radiation treatments for throat cancer from the HPV 16 virus. I also had surgery. I was wondering if anyone else went through treatment with Ménière's disease. My problem is with eating. Anything that I can eat which I find appealing is to salty. Anything I try to cook at home is so un appealing my stomach turns just thinking about it. I used to eat mostly salads and fruit but not having much luck with either at this point. I cannot drink protien drinks that make me I'll. Thank you in advance

RE: Food aversion

by CheyenneMoon - March 09, 2015

On Feb 17, 2015 3:00 PM augustus wrote:

 It has been over 8 weeks since my last radiation for stage 4 tonsil cancer.  I have no throat pain and I am physically able to swallow liquids and solids. I developed a mental issue with food, after being sick several times after eating, during my chemo and radiation treatments. Of course my mouth is dry and my taste buds are damaged. I can drink smoothies with fruit and high protien liquid in them with little issue. They taste ok some days; never good; and like dirty socks on other days.  I do at least 2 of these a day. I use a feeding tube for the remainder of my nutrition. I can also eat small servings of sliced fruit and it has some taste.  I have eaten some solid food; french toast, cream of wheat, scrambled eggs. But not consistently. They taste like dirty socks, and the texture tries to trigger a gag relex. I have not tried eggs or toast in a few weeks now. I watch cooking shows like Diners Drive Ins and dives. They have lots of burgers and comfort food. It looks great and makes me wish I could eat that kind of food again.  But I can not come close to putting food like that in my mouth without getting nauseaus. I was not previously a picky eater and have no food aversions prior to cancer treatment. It seems most people, if physically able, start eating sooner than I am. Their taste buds might now be back, but they seem to be able to eat more solid foods than I am doing. Any advise and will I get back to eating meat and potatoes again? 

LOL Augustus, I watched the same Diners Drive Ins and dives. I have a list of places to try out. Two months out of treatment I was able to begin to taste. Most things sound unappealing to me until I eat it. My problem is that I was a fruit and salad girl till this happend as I have to watch my sodium levels due to Meniere's disease. I am starting to eat a little of both but anything that is appealing is not very healthy and very salty. I am having good luck with seafood from Red Lobster(expensive) and Captain D's. I had to stop using my tube and protien drinks as my body rejects it. I try everything! It is very important to get over the aversion to food. There was a gentleman that was cured but his doctor put him with hospice because he won't try to eat. Red meat is about the last things you will be able to eat. I can do a hamburger steak with gravy or sometimes I buy a cheeseburger and eat just the burger. I have to sip room temp drinks when I eat to help it go down. You will get there. I was so afraid that I would be one of those people that would never eat again but I am. Hang in there and just keep trying. Like I said, nothing ever sounds appealing to me until I put it in my mouth. Oh and I can only swallow down my right side as the treated side still doesn't work to good. Chew every thing really well and take your time.

On Feb 14, 2015 4:06 PM Charley15 wrote:

Hi I am a 40 year old male and was diagnosed with stage 4 tonsil cancer with lymph node involvement on the left side of my neck.  We found out Christmas Eve. It has been a tough road deciding the best treatment option but decided to go with Chemo/Radiation as opposed to surgery due to the the effects from the surgery.

I tested positive for P16 and was told the outcome from this is higher.  I have 2 rounds of cisplatin and 36 treatments of radiation.  I had a feeding tube put in prior to beginning treatment. 

I am on the 14th treatment and have had 1 round of chemo.  I have shown progress with tumor reduction.  However, I am experienceing extremely dry mouth, severe sore throat.  I am able to eat but have lost all taste and anticipate I will not be able to eat much longer due to the throat pain and swallowing.

Can anyone tell me what has helped them with the throat pain.  I have the magic mouth wash and seems to help a little, pain medicine (oxy) and rinsing with baking soda and warm water.  Any more suggestions? 

I also wanted to know if anyone could tell me how long does the effects from the radiation last after completed treatment. Ex. how long will i use my feeding tube. 

Also, does anyone have any experience with the treatment not completely working and had to have surgery after?

Thank you in advance for your answers.  It  is so helpful to have someone who has been through this to get answers from. I have a wife and three kids and are trying to stay positive and fight this for them.

Hey Charley15! First and foremost I hope this finds you hanging in there. I am 3 months out from my treatment from throat cancer that went from tonsils to tongue to node on left side. I also had a feeding tube put in before I started treatment. It was a life saver. I had 36 radiation and 6 chemo treatments. Everyone that has replied to you has given you good advice.

To answer one question I had to have surgery after treatment. My node, during treatment, freaked out and grew to about 6 inches wide to 8 inches long. Doctors told me that was kinda rare and that it most likely died from the inside out and had fluid around it. My surgery was on the 11th of February and the node was more than 95% dead and had not spread to surrounding nodes. I am considered in remission. There was nothing left to biopsy on my tongue or tonsil.

I am still dealing with side effects as far as eating is concerned. It is very important that you never quit swallowing. I also looked up on the internet about mouth exercises for people with throat cancer. I exercised my mouth alot. Sorry I don't have the link anymore.

I still have my tube but the "formula" they gave me and we tried many, my body rejects. It did not at first but after a while I was just sick and nauseous all the time. As of 2/13 I made myself eat. The first thing I actually got down was a bowl of egg drop soup from PF Chang. I cried. Before all this happened I was a fruit and salad girl but they are still hard to eat. Nothing ever sounds appealing until I put it in my mouth. My biggest problem is that the things that are appealing are not that healthy. Seafood seems to go down pretty well but I have to sip room temp drinks while eating. I try all kinds of things and sometimes I choke which is scary. I have to swallow down the right side of throat but I can tell that eventually the middle and left side will work.

I never had any pain meds until after all treatments were down. I don't take much of anything anymore. I stayed with the pain meds a bit longer because of the surgery.

I don't know if anyone else has had happen to them what my biggest problem is right now. I have terrible anxiety since surgery and cry at anything. The doctors tell me that is normal and will eventually go away. Probably didn't help that I had to move on top of everything else.

I hope I was of some help. I tend to ramble. Stay positive even though it is difficult most of the time. Plow through it. Get it over with. We are curable.

Wishing you the best. I am here if you need to talk. :-)

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About cheyennemoon

Patient
Head and Neck Cancer
Emotional Support, Insurance, Radiation, Side Effects

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