getting started with treatment

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shamrock0521
shamrock0521 Member Posts: 10
edited March 2014 in Head and Neck Cancer #1
i was diagnosed 01/18/07 with a squamous cell carcinoma tumor in a lymph node on the left side of my neck,,,the primary at that time was not visable,,subsequent scans and biopsies found nothing,had an mri 02/25/07 that showed some atypical activity in upper part of my neck,,,doctor seems to think we may have found the primary,,will have area biopsied on 03/09/07,,so the start of treatment was pushed back,,hopefully this will be the primary and treatment can be modified appropriatley!will start 7 weeks of radiation along with 6 weeks of cisplaton,,will be getting ethyol/amofostin 4 days a week for the duration of treatment ,,on deck with gastro doc for peg tube if needed,,in addition will be getting neck disection after treatment ,,would really like to get the ball rolling and get closer to the healing process,,guess i need to patient at this point,,any suggestions or encouragement at this point will be greatly appreciated and welcome!!!thanks dennis

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  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
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    shamrock, my thoughts are with you. I am one year survivor of neck and tongue cancer. They replaced half of tongue with tissue from arm and also took out lymph nodes on right side of neck.

    I am familiar with what you are up against, although you should have an easier go of it (easy for me to say now :)).

    The interesting thing to me from your comments is that they are going to do surgery after the chemo and rads. My docs told me (and this may have just been the tongue stuff, so don't get excited) that they needed to the surg first, or they would probably not be able to do it later if it proved to be required, because the rads soften tissue greatly. You might just ask about that.

    I am not a doctor!

    Otherwise, I suspect you will wear a mask during the rads, as I did, and for some of us that is a problem. For my part, I told them after they made it and ran me through a trial run "I am going to die" because I was never going to wear that mask again. :). I did wear the mask, for the entire seven weeks. Valium helped. If you have to wear the mask and are comfortable with that, good for you. If you have to wear the mask and are NOT comfortable with it, ask them for valium. You can wean yourself from it as time goes by.

    Chemo will make you very nauseous. You can expect a couple of days of utter sickness following treatment. It is simply something to deal with. I am not familiar with your exact regimen, re the chemo, as I suffered it just every couple of weeks or so. That made it easy: do chemo, get sick, feel better. If it is daily, or 4 days a week, I can't tell you how to deal with it.

    The peg tube is an issue unto itself. If you don't need to use it, then don't. I am a year and then some away from surgery, and I still have a peg and still use it to feed myself. When it fell out, I advised them not to replace it because it is too easy to use. They did anyway in my case, due to the tongue thing.

    In any event, you are a survivor, my friend. Congratulations! That may seem like an odd thing to say when you have discovered you have cancer, but you are alive, and you have many years ahead of you.

    Hopefully, you will choose to make them happy years for you and all of those around you. You DO have those years ahead of you.

    Take care.
  • shamrock0521
    shamrock0521 Member Posts: 10
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    shamrock, my thoughts are with you. I am one year survivor of neck and tongue cancer. They replaced half of tongue with tissue from arm and also took out lymph nodes on right side of neck.

    I am familiar with what you are up against, although you should have an easier go of it (easy for me to say now :)).

    The interesting thing to me from your comments is that they are going to do surgery after the chemo and rads. My docs told me (and this may have just been the tongue stuff, so don't get excited) that they needed to the surg first, or they would probably not be able to do it later if it proved to be required, because the rads soften tissue greatly. You might just ask about that.

    I am not a doctor!

    Otherwise, I suspect you will wear a mask during the rads, as I did, and for some of us that is a problem. For my part, I told them after they made it and ran me through a trial run "I am going to die" because I was never going to wear that mask again. :). I did wear the mask, for the entire seven weeks. Valium helped. If you have to wear the mask and are comfortable with that, good for you. If you have to wear the mask and are NOT comfortable with it, ask them for valium. You can wean yourself from it as time goes by.

    Chemo will make you very nauseous. You can expect a couple of days of utter sickness following treatment. It is simply something to deal with. I am not familiar with your exact regimen, re the chemo, as I suffered it just every couple of weeks or so. That made it easy: do chemo, get sick, feel better. If it is daily, or 4 days a week, I can't tell you how to deal with it.

    The peg tube is an issue unto itself. If you don't need to use it, then don't. I am a year and then some away from surgery, and I still have a peg and still use it to feed myself. When it fell out, I advised them not to replace it because it is too easy to use. They did anyway in my case, due to the tongue thing.

    In any event, you are a survivor, my friend. Congratulations! That may seem like an odd thing to say when you have discovered you have cancer, but you are alive, and you have many years ahead of you.

    Hopefully, you will choose to make them happy years for you and all of those around you. You DO have those years ahead of you.

    Take care.

    soccerfreaks thanks alot for the fellowship and encouragement!!!gonna find out more about the surgery after they biopsy my larynix on friday!!had the tatoo and the mask already in place,,,have a tongue depresser with a piece of cork taped to it to push my tongue down during radiation,,,the mask doesnt bother me too much but the tongue depressor is really uncomfortable,,,have had alot of anxiety waiting for treatment to start,,,would really just like to fight the fight at this point!!i know i have some pretty lowsy days ahead of me,,but i know that there have been many brave people who have gone before me!!!i will be a survivor!!thank you for driving that point home for me ,,,all the best ,,,,dennis
  • vinny59
    vinny59 Member Posts: 1,036 Member
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    Hi, I just got thru my 7 weeks of radiation and 6 weeks of cisplaton.I first had a tumor removed on the left side of my neck.I suggest eating like a pig to get your wieght up, sounds weird I know but I put on 15lbs. before my treatment, thus not needing a feeding tube. The extra wieght helped me(I lost 34 lbs. during treatment) As soccerfreaks stated you will get nauseous from the chemo.They have medication that will help you with that. It is called Zofran. I still need to take it and I'm two weeks out of my last treatment. I was in the hospital when I recieved the chemo. You really have to stay hydrated. Just remember to keep a positive attitude you will get through it! I will say a pray for you. Any other questions just ask.
  • shamrock0521
    shamrock0521 Member Posts: 10
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    vinny59 said:

    Hi, I just got thru my 7 weeks of radiation and 6 weeks of cisplaton.I first had a tumor removed on the left side of my neck.I suggest eating like a pig to get your wieght up, sounds weird I know but I put on 15lbs. before my treatment, thus not needing a feeding tube. The extra wieght helped me(I lost 34 lbs. during treatment) As soccerfreaks stated you will get nauseous from the chemo.They have medication that will help you with that. It is called Zofran. I still need to take it and I'm two weeks out of my last treatment. I was in the hospital when I recieved the chemo. You really have to stay hydrated. Just remember to keep a positive attitude you will get through it! I will say a pray for you. Any other questions just ask.

    hey vinny ,,thanks,,i am eating like crazy,,treatment sounds similar but im not going in hospital for chemo,,gonna take emend triflow pak day of and 2 days after ,,did u take that ,,they say it really helps,,,also gonna get amafostin/ethyol injections did u take them,,,how are you feeling,,,did u drink meal replacements??im praying for you,,had another biopsy today ,,,should start treatment on the 19th,,keep in touch,,,dennis
  • jackie1
    jackie1 Member Posts: 6
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    soccerfreaks thanks alot for the fellowship and encouragement!!!gonna find out more about the surgery after they biopsy my larynix on friday!!had the tatoo and the mask already in place,,,have a tongue depresser with a piece of cork taped to it to push my tongue down during radiation,,,the mask doesnt bother me too much but the tongue depressor is really uncomfortable,,,have had alot of anxiety waiting for treatment to start,,,would really just like to fight the fight at this point!!i know i have some pretty lowsy days ahead of me,,but i know that there have been many brave people who have gone before me!!!i will be a survivor!!thank you for driving that point home for me ,,,all the best ,,,,dennis

    shamrock about the larynx! if it turns out, that
    you may have cancer there,let me know i have much
    knowledge in this area. hopefully not though. i
    am surprised that you are having rads before surgery. many times if surgery is done after rads
    tissue doesn't heal well if even and can also
    cause fistulas, also ask the radiation doc to explain about your teeth and salivary glands, very
    important. wish you well,,, Jackie
  • vinny59
    vinny59 Member Posts: 1,036 Member
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    hey vinny ,,thanks,,i am eating like crazy,,treatment sounds similar but im not going in hospital for chemo,,gonna take emend triflow pak day of and 2 days after ,,did u take that ,,they say it really helps,,,also gonna get amafostin/ethyol injections did u take them,,,how are you feeling,,,did u drink meal replacements??im praying for you,,had another biopsy today ,,,should start treatment on the 19th,,keep in touch,,,dennis

    Hey Dennis,As far as my treatments, I was given Cisplaton, after I recieved a steriod, Zofran, and a steady diet of saline solution. The reason I was in the hospital is because my Doctor felt they could keep me hydrated more easily.Its very important to keep your kidneys working during treatment. Make sure you drink as much fluids as possible.The injections I recieved was for my low blood counts, they got quite low ( normal is 4.0 I bottomed out at 1.4) They are now at 2.4 still low but they are rising. On a good note my doctor told me just think of what the drug is doing to the bad cells! This sounds corny but remember no pain no gain. This is the first week I feel more like myself, food still has no taste to me, but at least it does not taste as metallic as it once did. Speaking of food I did take Ensure, but I was able to keep down eggs in the morning, and Pastina made with chicken stock and minced vegetables. It seems your Irish,(what gave me that idea,HAHA, happy St. Pattys Day! )so in case you do not know, Pastina is a small star shaped pasta. I also was able to eat good old Ramen noodles. That was my basic diet for about four months. Think of it like your on the tv series Survivor.( got to keep a sense of humor! )Dennis just remember that time does fly by and you will be done your treatment before you know it. You keep in touch also..... Vinny
  • shamrock0521
    shamrock0521 Member Posts: 10
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    vinny59 said:

    Hey Dennis,As far as my treatments, I was given Cisplaton, after I recieved a steriod, Zofran, and a steady diet of saline solution. The reason I was in the hospital is because my Doctor felt they could keep me hydrated more easily.Its very important to keep your kidneys working during treatment. Make sure you drink as much fluids as possible.The injections I recieved was for my low blood counts, they got quite low ( normal is 4.0 I bottomed out at 1.4) They are now at 2.4 still low but they are rising. On a good note my doctor told me just think of what the drug is doing to the bad cells! This sounds corny but remember no pain no gain. This is the first week I feel more like myself, food still has no taste to me, but at least it does not taste as metallic as it once did. Speaking of food I did take Ensure, but I was able to keep down eggs in the morning, and Pastina made with chicken stock and minced vegetables. It seems your Irish,(what gave me that idea,HAHA, happy St. Pattys Day! )so in case you do not know, Pastina is a small star shaped pasta. I also was able to eat good old Ramen noodles. That was my basic diet for about four months. Think of it like your on the tv series Survivor.( got to keep a sense of humor! )Dennis just remember that time does fly by and you will be done your treatment before you know it. You keep in touch also..... Vinny

    hey vinny,,thanks again,,starting treatment monday 03/25 ,,,nothing found in the larnyx,,so primary is unknown,,ent said sometimes the immune systems kills off the primary ??/nonetheless i start treatment on monday,,,gonna take all your suggestions and use them,,hopefully i can get some ham and cabbage down missed it on st pattys day,,how u feelin,,how far out from treatment are you??
  • vinny59
    vinny59 Member Posts: 1,036 Member
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    hey vinny,,thanks again,,starting treatment monday 03/25 ,,,nothing found in the larnyx,,so primary is unknown,,ent said sometimes the immune systems kills off the primary ??/nonetheless i start treatment on monday,,,gonna take all your suggestions and use them,,hopefully i can get some ham and cabbage down missed it on st pattys day,,how u feelin,,how far out from treatment are you??

    Hey Shamrock,I'm out 4 weeks now. I'm feeling alot more like myself. Blood counts are still alittle low ,but they should bounce back. My taste buds are still not back,but I know now that its going to take some time. Good luck with your treatment, stay strong. Anymore questions you just ask! Talk to you soon..... Vinny
  • shamrock0521
    shamrock0521 Member Posts: 10
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    vinny59 said:

    Hey Shamrock,I'm out 4 weeks now. I'm feeling alot more like myself. Blood counts are still alittle low ,but they should bounce back. My taste buds are still not back,but I know now that its going to take some time. Good luck with your treatment, stay strong. Anymore questions you just ask! Talk to you soon..... Vinny

    hey vinny ,,glad to hear your feeling better,,did you work at all during treatments??are you back to work yet??gonna have to force myself to drink alot of water that in itself is very hard for me,,,tomorrow is the start of treatment looking forward to finally getting started and finished,,all the best to you in your healing,,,,dennis
  • digital_works
    digital_works Member Posts: 8
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    Hi, I had NPC Oct 1999. I'm cancer free. I had 2 months of rads, every 2 weeks I had cisplatin. In the beginning it's terrible, you'll feel real sick everyday, puking. I puked from 6am , every 2 hrs. and till 1 am at nite. Drink ensure, it's easy to puke up. I was diag w/ stage 3. If you can live w/o the g-tube, don't get it. I went from +160 lbs to 123 lbs. that's a piece of cake. Don't worry so much about getting thin. Drink ensure. After cisplatin, I had a follow up of 5FU for 6 months w/ 24 hr. battery pack to wear all the time. Made me sick all over again. If I was a masochist, I'd be like a pig wallowing in heaven. Everyone looses hair, so just shave it all off now. Today I wear a crewcut, I use a flowbee all over my head. Hey Bald is in now, it's fashionable. I wound up w/ osteonecrosis from the intense rads I had. Maybe you'll be luckier. I was given 3 months to live and it's now 2007. I beat the death bell. Cisplatin is oxotoxic, you loose hearing. I got 50% hearing lost. I can't hear high frequencies, I can't hear womens voices to good. Humm, before my cancer, I remember girls saying "Are you listening to ME !?" ... I don't the see the difference, Oh well, humm, nothing gain, nothing lost. When you can swallow again, pills are Ginko Bilboa, melatonin and vit C 500 mg. Try ZipFiz, Emergen-C, Green tea. It's a waiting game of hell & pain. And when you come out if it, you made the toughdown of your life.
  • digital_works
    digital_works Member Posts: 8
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    vinny59 said:

    Hey Dennis,As far as my treatments, I was given Cisplaton, after I recieved a steriod, Zofran, and a steady diet of saline solution. The reason I was in the hospital is because my Doctor felt they could keep me hydrated more easily.Its very important to keep your kidneys working during treatment. Make sure you drink as much fluids as possible.The injections I recieved was for my low blood counts, they got quite low ( normal is 4.0 I bottomed out at 1.4) They are now at 2.4 still low but they are rising. On a good note my doctor told me just think of what the drug is doing to the bad cells! This sounds corny but remember no pain no gain. This is the first week I feel more like myself, food still has no taste to me, but at least it does not taste as metallic as it once did. Speaking of food I did take Ensure, but I was able to keep down eggs in the morning, and Pastina made with chicken stock and minced vegetables. It seems your Irish,(what gave me that idea,HAHA, happy St. Pattys Day! )so in case you do not know, Pastina is a small star shaped pasta. I also was able to eat good old Ramen noodles. That was my basic diet for about four months. Think of it like your on the tv series Survivor.( got to keep a sense of humor! )Dennis just remember that time does fly by and you will be done your treatment before you know it. You keep in touch also..... Vinny

    Hi, get a slow cooker, crock pot. You'll be able to eat real soft meat, like chicken, turkey and long cooked mushy veggies. After the crock pot, add some soupy/watery ; cream of wheat or rice.
    Put all crock pot stuff and CoW/CoR in a blender, maybe add soft cooked eggs. You should be able to swallow this soft stuff. Think about whey protein from a health food store, they make vanilla and chocolate. Brewers yeast is good for B vitamins. cya around
  • gdpatel52
    gdpatel52 Member Posts: 2
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    Affordable HME supplies for Total Laryngectomy patient

    My father had total Laryngectomy 45 days ago and he is going through very tough situation. He is too weak to do anything physically as well as mentally. As a son, I am helping him as much as I can. He is staying with me right now. I can provide food and shelter but medical expenses are getting expensive because my father and mother do not have any type insurance. They are green card holder and not citizen yet so they are not qualified for nay benefits. Whatever they have they spent on cancer treatment in last years in india. Every six months they went to india for cancer treatment. I am not sure how I can afford supplies for his daily needs such as HMEs, and other things needed for Laryngectomy patient. Please advise. 

  • wbcgaruss
    wbcgaruss Member Posts: 2,366 Member
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    Old Posting

    gdpatel152 this is an older post you may be better off posting a new one here are the instructions from CSN---I know there is a fella on here I believe his name is Bill who had a total laryngectomy and some others hopefully you get some responses.

    To post a new discussion topic on a discussion board:

    • Log on to your CSN account at www.cancer.org/csn using your username and password; you will be directed to the CSN Home page.
    • Click on ‘Discussion boards’ on the left navigation menu or under ‘Connect and Communicate’
    • Locate the discussion board of your choice.
    • Click the ‘Add new Forum topic’ link at the top of the discussion board page.
    • On the ‘Create Forum topic’ page, enter a title into the ‘Subject’ field and your message into the ‘Body’ field.
    • Select ‘Preview’ to see your completed message before it is posted.
    • To submit your message, select ‘Submit.’
    • When you select ‘Submit’ the message will be posted on the discussion board of your choice.