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lynnfighting's Message Board Messages

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On Oct 27, 2014 12:40 AM Dlynn1210 wrote:

Lynn -

Open heart surgery requires surgeons to stop the heart which is bringing a person to the brink of death - and the heart is restarted as soon as the procedure is completed which "pulls" them back. 

The survival rates for those diagnosed with cancer are increasing daily with new found treatments.  Treatments for head and neck cancers have a very high success rate.   

Diana    

I t is clear you thnk you are a guru I am speaking from experience....I don't think we help anyone by shying away from the truth..it is horrible and your life will never be the same ...fact

On Oct 26, 2014 11:17 PM Dlynn1210 wrote:

Cheyenne -

It seems that one person has shared every possible bad side effect - most you will not experience. As I read the post all I could think was what kind of doctor would tell a patient that "I will bring you to the edge of death and then I AM GOING to pull you back"?  This is not open heart surgery or brain surgery. 

I have addressed at length in private the answers to all of your questions - and as I promised, I was totally honest with you.  I told you why I lost 20 lbs - because I wouldn't listen to two different oncologists and have a PEG tube put in prior to beginning treatment.  I have no one to blame but myself and as I look back, I don't know why I thought it was so important to make it through without one?  Once I did get it, that ended my weight loss.  I was also able to put water through my tube which is vitally important.  I was probably one of the worst about becoming dependent on the tube - and I wound up with it for a year.  It was no big deal having one even for a year but most on here have it only for a short time.  I just found it easier to pour water down the tube than to drink so much water so I used the tube more than I should have.  This is why I cautioned you about drinking as much as you could. The tube provided nourishment and easy access for fluid - AND I was back to eating a year post treatment - and cancer free. 

The one thing I did not address in my emails was what to use on the radiated area because it wasn't asked.  I used Remedy Skin Repair Cream with Olivamine by Medline Industries.  There is also a precription cream especially for chemo patients but I cannot remember the name.  Any oncologist should be able to prescribe it if asked.  It is fairly expensive but well worth it - and I only needed it for a short time.  I also used aloe straight from the plant after I was told NOT to use the gel sold at pharmacies because it also has ingrediens that we should not use. 

I have been on Cancer Compass for seven years and the vast majority of time so much first hand information is shared as well as emotional support from survivors for those traveling the road we have already been down.  Oncologists do not share EVERY possible side effect because quite honestly there is no way of knowing what this patient will or will not experience.  

Don't even hesitate about beginning treatment.  I'm not familiar with the type of radiation you are having but out of IMRT and TOMO (two different types of radiation machines) - TOMO helped salvage most of my salivary glands.  I have great saliva production today thanks to TOMO.      

Diana 

An honest Dr who saved my life....you did what was right for you not for everyone...your right you can be ok from heart surgery not cancer

On Oct 26, 2014 11:17 PM Dlynn1210 wrote:

Cheyenne -

It seems that one person has shared every possible bad side effect - most you will not experience. As I read the post all I could think was what kind of doctor would tell a patient that "I will bring you to the edge of death and then I AM GOING to pull you back"?  This is not open heart surgery or brain surgery. 

I have addressed at length in private the answers to all of your questions - and as I promised, I was totally honest with you.  I told you why I lost 20 lbs - because I wouldn't listen to two different oncologists and have a PEG tube put in prior to beginning treatment.  I have no one to blame but myself and as I look back, I don't know why I thought it was so important to make it through without one?  Once I did get it, that ended my weight loss.  I was also able to put water through my tube which is vitally important.  I was probably one of the worst about becoming dependent on the tube - and I wound up with it for a year.  It was no big deal having one even for a year but most on here have it only for a short time.  I just found it easier to pour water down the tube than to drink so much water so I used the tube more than I should have.  This is why I cautioned you about drinking as much as you could. The tube provided nourishment and easy access for fluid - AND I was back to eating a year post treatment - and cancer free. 

The one thing I did not address in my emails was what to use on the radiated area because it wasn't asked.  I used Remedy Skin Repair Cream with Olivamine by Medline Industries.  There is also a precription cream especially for chemo patients but I cannot remember the name.  Any oncologist should be able to prescribe it if asked.  It is fairly expensive but well worth it - and I only needed it for a short time.  I also used aloe straight from the plant after I was told NOT to use the gel sold at pharmacies because it also has ingrediens that we should not use. 

I have been on Cancer Compass for seven years and the vast majority of time so much first hand information is shared as well as emotional support from survivors for those traveling the road we have already been down.  Oncologists do not share EVERY possible side effect because quite honestly there is no way of knowing what this patient will or will not experience.  

Don't even hesitate about beginning treatment.  I'm not familiar with the type of radiation you are having but out of IMRT and TOMO (two different types of radiation machines) - TOMO helped salvage most of my salivary glands.  I have great saliva production today thanks to TOMO.      

Diana 

This is a war on cancer we are warriors not survivors...I am so sorry if someone found me offensive....I am speaking of my experience Please do not sugar coat it we will be changed forever.We need support and understanding.We have to fight

treatment is the only thing thing that will save us. I  am sorry if I scared you but I wish I had this information so it did not come as a shock to me...

On Oct 25, 2014 1:39 PM CheyenneMoon wrote:

Well crap! Was looking at my insurance claims and they have paid nothing. I can't afford treatment without insurance!!

Hi Cheyenne.

I don't want to scare you but no one is talking about what will happen or what to expect during treatment or afterwards.I wish I was told.My Dr. who saved my life told me I am going to bring you to the brink of death have you look over and pull you back.At the time I couldn't fathom what he was saying.

I had 36 treatments stage 3 the cancer grew into my voicebox there was a chance I could loose my voice box and there still is. I was diagnosed 3/8/2012. Most people loose around 20 lbs I was thin to begin with we spoke about the feeding tube from the beginning I refused it thruout treatment.Someti mes you give up eating and become dependant on it .I love to cook and eat I didn't want to take that chance. I used Aquafor on my neck every day after radiation with a soft material wrapped around my throat. The skin will burn and peel and can often look like hide afterwards. So please take care of your skin.

Very quickly all food and drink tasted like metal I couldn't ger thru a bottle of water a day.It was very hard to eat anything even broth.By my 20th treatment exhaustion set in ,By week 5 it really hit me .I am a very strong personality but I felt like giving up.My Dr.'s and nurses and family got me thru it and alot of prayer..

After treatment is when it hit me I couldn't eat I ended up in the hospital with intrevinous nutrition. When I came home I had A port in my arm and a nurse came daily the nutrition bags were delivered to my home weekly.I would sleep most of the day. Take care of your mouth I have dry mouth because the radiation zapped my saliva glands.Oral health  is very  important .I have hypothyroidism radiation got that also .I have lymphdemia as well. I did hypoberic chamber for 40 days and that helped the lymphdemia..

For me the battle was after radiation the Dr's dont tell you all of this because it may or not happen to you and it is too much to take in at the time.Afterw ards nutrition is the way to build yourself back up I used a mass gainer from GNC to help gain weight back it took over a year. They tell you ...you will have a new normal and it will be different but you get thru it and adjust..

Now let me tell you the good stuff my family sisters,daughters and grandchildren treat each other differently.We express our love for each other .We talk about everything.I appreciate everything I have the little things like the wind on my face.My faith in God and prayer has never been stronger.I have met wonderful people in my journey and continue to.

Best

Lynn

Hello Cheyenne,

I had throat cancer 2 years ago.I also had panic attacks regarding the mask.I took adivain and it helped.I also listened to music.I don't think  people can really understand that feeling when when they place the mask on you and and then the board it is horrible to go thru.The nurses I had were wonderful they cut and adjusted it many times to make it easier. I had 36 treatments and came thru it my heart goes out to you. Have faith ...prayer is my comfort...

Lynn

I lost alot of weight ....what worked for me was at GNC it is a mass gainer complex they will help you in the store as to which one will give the most calories and mix with whole milk I had two shakes a day it ws actually good...it gave me about 2000 calories a day....It took me time to eat agin and this really helped....god luck to you

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About lynnfighting

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Ewings Sarcoma, Laryngeal Cancer

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