New Guy Starting Chemoradiation treatment tomorrow... Yikes!

Hello All,

I am am new to this site and a first time poster. I would first like to say a quick thank you all of you who are on here and continue to post valuable information and answer other various questions concerning all things H&N cancer related. I have already learned a lot from all your many posts and I really appreciate it.

Here is my story, first off I am 39 years old, married to an amazing women for 11 year with two beautiful boys. Back in June I noticed a lump in my right neck, I thought it was a little strange but not to concerned as I had been dealing with allergies all year I assumed it was related but I did keep an eye on it. I read on the Internet not to freak out and give it 6 weeks and if it had not gone down or gone away I should go have it checked out by a doc. So that what I did and 6 weeks later no noticeable change was seen. So I went to a Doc-in-the-box to get checked out, I don't even have a PCP because I never get sick, they looked me over and said yea you've got something there you better go to a general surgeon and have them take a closer look, so I did. First a CT scan said it was probably nothing just looked like a cyst then a FNA biopsy which two days later on 8/13/15 revealed SCC. I was then sent to the local ENT surgeon the next day for an oral exam and no signs of cancer or primary tumor was seen. He recommended that I undergo a tonsillectomy (both tonsils) and a modified radical neck dissection. After that he said i would need chemo and radiation as a follow up treatment and if I did all that he felt like I would have about an 80% chance of being cancer free or as I am learning NED after 5 years. Which all in all didn't sound too bad although I had no idea what any of these treatments would be like or how they will change my life. I of course went for a second opinion (which I will always reccomend for anyone) on everything at the nearest cancer center which was at a University hospital. They pretty much confirmed and reccomend all the same treatment of course they first had to try and locate the primary tumor and see how many/much lymph nodes were involved.

So I had the surgery a week after diagnosis on 8/20/15 it was a very successful surgery. The primary tumor was found in the right tonsil as my ENT suspected and the tumor was completly removed with a negative margin although a very small margin. I had 17 nodes removed with 2 positive for cancer cells. There was extra capsular extensions in at least one lymph node And my tumor did test positive for HPV-16. I was diagnosed with T2N2b stage IVb SCC of the H&N. The first 10 days of surgery recovery was rough and I couldn't eat much because of an obvious sore throat but also because the doc took some biopsies from the back of my throat to include the base of my tongue and man that hurt worse than all of it put together. A big ouchy.

Since my surgery i once again recieved multiple opinions on the recommended Chemoradiation treatment and i have spent countless personal hours studying and researching this cancer it's treatment and any other possible homeopathic/naturopathic cures that might be out there. And although I find much of the natural homeopathic approaches compelling i ultimately decided to have the Chemoradiation treatment my medical doctors reccomend because it has the most 'statistically' favorable outcome.

I start my chemoradiation treatment tomorrow which will be cisplatin by IV once a week for seven weeks along with 32 Tomo(IMRT) radiation treatments. Broken down into the first 25 fractions of 2 gray each to the left and right head and neck area, pretty much from the cheek bone to the collar bone on both sides and then the last 7 fractions of 2 gray to just the right side, where the cancer was removed, right tonsil area and right mid neck.

i am curious to know if anyone else who had surgery first received their radiation in a similar dose/area as mine. I have read many stories from you all it appears most people receive more rad sessions (35 on average) and possibly to the both sides of the neck for all sessions?

I wish I could say that Im not scared of having this treatment but I cant. I am mostly scared of all the unknowns, short term and long term side effects of the treatment. I do have a strong faith in God and I know that he is going to get me through this in one piece because he is able. 

Thanks for everything that you all have already contributed and for the support that you provide. I hope to be on the other end of this cancer one day soon and that I might help someone else who is in my shoes today.

jake...

PS: I am not having the PEG tube put in on the front end and I pray i don't regret it. I just couldn't bring myself to go there in my mind. :(

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Comments

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    hey, jake, welcome to our

    hey, jake, welcome to our wonderful family.  i'm truly sorry you need to join though.  you have found the best place to be as we will help you through this.  feel free to ask any and all questions, vent, cry, yell, celebrate, share, whatever you feel at any given moment is acceptable.  your wife is also welcome to join, if she'd like.  there are many caregivers here and we truly love them all.  without the wonderful caregivers, we could not do this.  as for being scared, we all were and to be honest, i think we are all still a little scared....we always worry if it will come back.....the road you're about to embark on will be a rough road but you can do it.  i had cancer of the larynx, had 35 rad tx but no chemo.  that was 2009.  then in 2012, i had recurrence and had a total laryngectomy.  that means i now breathe through a hole in my neck and my nose and mouth are just there.  the side effects from rads are no joke.  but honestly, some people get by with zero! there have been two here very recently who got by without the normal problems or side effects and were even a little worried about that.  chances are better that you will have some, but i don't think anyone ever gets them all.  i agree with you about the tongue being an ouchy!  my tongue was never sore but since cancer, my mouth and tongue seems to be sore all the time.  even my lips hurts, they seems to get sores on them.  i don't know why this happens.  i never realized how tender the mouth is!  check out the superthread.  you can find a wealth of info there.  things to expect, things you may be able to eat once your throat gets sore, what helps the burns, what helps with chemo sickness, etc.  we will be on the sidelines cheering you on, Jake, so if you get down, stop and listen, you will hear us yelling for you.  please let your wife know, we'll welcome her also if she'd like to be part of the family.

    God bless you,

    dj

  • Barbaraek
    Barbaraek Member Posts: 626
    Welcome & all the best

    I'm sorry you have to be here Jake, but glad you have found a great support network. My understanding is that the radiation is mapped out and tailored to the individual based on the site and size of the tumor....it's personalized. So it may be very different from the other ones you have read about here on the message board.

    Now, Cisplatin...my husband had a lot of side effects from it - I hope you will be lucky and not have many! The main things to look for are mucositis and nausea. I would recommend putting the key word mucositis in the search bar for messages here and you will become an expert in no time at all. For us, that was the hardest side effect to manage.

    You will read over and over to try and keep swallowing and to hydrate. DO IT! On the other hand, it is not a failure or a defeat if you have to get a PEG tube. My husband had his put in at week #2 and was sorry he hadn't done it earlier. Other folks make it through the tx without needing a PEG at all.

    Try and be kind to yourself...it's going to take time to get through all the treatments and then it take MORE time to recover from beating up your body so much. I think the biggest problem my husband and I face right now, is being patient with the healing process. Day to day progress seems so unbearably slow...but when you look at it from week to week you can believe that you are making progress.

    Ask questions, enlist support, and be as positive as you can! We are here for you.

    Barbara

  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    Welcome

    Jake

    I was not tongue, like Skiffin/John and a number of others, but I think it's safe to say the Primary being found and removed is a very, very, good thing. 

    I do wonder if you're getting treated at a major C Center, or a small city hospital environment? Your Drs giving you the 80% is one of the reasons, as for H&N most put the chances at 90-95%.

    My main concern with reading your post does have to do with the rads. Chemo is more for stopping the replication of C cells, rather than the rads, which fry them into oblivion. I was unknown Primary w/two enlarged lymphs, and told I'd have 35 rads; however, my chemo regiment was different than others, and I got very sick in weeks #5&6, which included 4 nights in a hospital. I ended up, though, only going thru 31 full rad sessions (20 places/session), and an additional 3 in 5 places, so I did not go thru the typical 35.

    Thing is, Jake, it seems we're seeing a few more cases where C comes back within a year of the last rad than we used to. That leads one to wonder if protocol in the C treatment community has changed a little, perhaps out of concern over long term damage the rads do to areas applied. FACT IS that the #1 concern of all C Drs should be the total elimination of the C, regardless of side effects, because if it comes back within a few years your options are far less- more rads is usually prohibitive. The only way to error with C is on the side of the aggressive. I write this more for everyone who reads this and is in or about to go thru treatment, rather than just for your case. We've seen a few changes over the years in what seems to be the current fad for tx C&R regiments.

    That said, it is very possible the rads they're planning is due to the removal of the Primary, and removal of the nodes you did have done, so maybe what they've got in mind is cool. Keep it in the Positive, and be thinking more along the lines of 95% to the good. Oh, and by the way: you're gonna survive this thing, so get used to it.

    Believe

    kcass

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    Welcome

    Jake,

    Welcome to the H&N forum, sorry you are here.

    I was stage IVa, scc, bot, 1 lymph node, hpv + (surgery, rads & Erbitux).   I started drinking lots of water from day 1 and believe it was some of the best advice I got from the forum.  I never liked the mask, but found 1 Lorazepam and a CD of oldies music helped.

    Make sure you  have everything recommended, it is better to be prepared than not.  Don’t try to tough it out, you need to be ready to fight.  I think the superthread still has a list of must haves.

    If it gets hard to eat, than switch to drink.  Do whatever you need to.

    Good luck and hang in there!

    Matt

  • Kenny-
    Kenny- Member Posts: 98
    CivilMatt said:

    Welcome

    Jake,

    Welcome to the H&N forum, sorry you are here.

    I was stage IVa, scc, bot, 1 lymph node, hpv + (surgery, rads & Erbitux).   I started drinking lots of water from day 1 and believe it was some of the best advice I got from the forum.  I never liked the mask, but found 1 Lorazepam and a CD of oldies music helped.

    Make sure you  have everything recommended, it is better to be prepared than not.  Don’t try to tough it out, you need to be ready to fight.  I think the superthread still has a list of must haves.

    If it gets hard to eat, than switch to drink.  Do whatever you need to.

    Good luck and hang in there!

    Matt

    Going through the same in 2 days

    Jake,

    I'm sorry that you're here. I'll also be going through the same treatment 2 days from now. We can probably keep each other posted and motivated by the progress. 

    Chemoradiation: 6 weeks of rads and cisplatin every 3 weeks (day 1, 22, 43) followed by Cisplatin + 5 F/U (another 3 rounds).

  • phrannie51
    phrannie51 Member Posts: 4,716
    Hello...and welcome to this great forum

    Jake.  The people here are so supportive, and so knowledgeable....especially when it comes to the little details that the Drs. don't know about or ever considered....

     I had NPC (nasopharyngeal carcinoma)....that's behind the nose.  I think that's what Kenny has, too...and why his chemo isn't the same as yours.  But you two will be starting together and for me at the time I started, there was comfort in knowing I had "bus partners". 

    What I've learned here is....everybody is different, has different reactions to the same treatments....I got through radiation and Cisplatin without using a PEG tube (tho I had one)....I did need it later tho, when I had adjuvant chemo.  All I can say about the tube is this....Never say never.....it can be a life saver, as the two things you need the most during treatment are hydration and nutrition....these are absolutes, so if it has to be delievered via a feeding tube....embrace it!  One thing about tubes, they can be put in at anytime during this process. 

    Another hint about chemo....take the antinausea meds even if you don't feel sick.....it's way easier to stay on top of it, than to try and play catch up....

    You're going to get through this....it's a one day at a time deal....light days, and dark days....but you only have to get through the day you're in....Skiffen calls this groundhog days.....go to radiation go home, day after day....just like a job.  And those days just tick by....all of a sudden you hit the half way mark....then the single digit countdown....and then it's over, and healing is what is in front of you.  It's going to be ok....

    We're here to help you get through the "details"...what to eat, how to make yourself more comfortable, etc...

    You got this!!!

    p

  • jakesaround
    jakesaround Member Posts: 34
    Thanks for all the quick

    Thanks for all the quick replies and the encouragement you all are sending my way. I am sitting in the chemo chair as I type this message and then I will go have my first rad treatment about 4 hrs from now.

    Cass, I will follow up with my rad onc about the dosing and duration of my radiation just to make sure he isn't cutting any corners on me. As much as I don't want to have this treatment I really don't want this cancer to come back.

    You all have already put my mind and heart at ease and I am grateful to have a "bus" buddy in Kenny.

    i will keep you all posted on my progress and with any questions that may come up.

    ttyl,

    Jake...

  • Barbaraek
    Barbaraek Member Posts: 626

    Thanks for all the quick

    Thanks for all the quick replies and the encouragement you all are sending my way. I am sitting in the chemo chair as I type this message and then I will go have my first rad treatment about 4 hrs from now.

    Cass, I will follow up with my rad onc about the dosing and duration of my radiation just to make sure he isn't cutting any corners on me. As much as I don't want to have this treatment I really don't want this cancer to come back.

    You all have already put my mind and heart at ease and I am grateful to have a "bus" buddy in Kenny.

    i will keep you all posted on my progress and with any questions that may come up.

    ttyl,

    Jake...

    Prayers headed your way

    day one - soon you can check it off! We're sending lots of prayers and support to you and Kenny as you start your journeys. 

    Barbara

  • wmc
    wmc Member Posts: 1,804
    Welcome to the H&N Group Jake

    Welcome to the group, and sorry you need to be here. You have every right to be a little scared as just the word cancer is scary. However you have many things in your favor you might know. It is HPV+ which responde better then not being HPV. Also the primary is known which is very good and your odds go way up. 

    Mine was very different as it was just above my vocal cords and blocking the left one. 3cm x 2.5 cm the size of a very large grape. I have COPD and my lungs are bad to say the least so I only had surgery and they had to remove my larynx due to my lungs I could not survive radiation or surgery with out doing it that way. They took 86 glands as a precaution and all were clean. I naver needed radiation or chemo so the others will answer those questions as most of my knowledge about that it from them. The reason it went to stage 4 is because it is in a lymph node so do not be too concerned about the 4. I was T4; N2; M0 just before surgery and when it was done it was only T3; N0; M0 and had not gone to a lymph gland. They had them all tested while I was still in surgery and new all 86 were clean. For me all went well as I never had to go to ICU, just my room. Everyone it treated just a little different just because of your body and any other conditions.

    You might want to put on a few extra pounds if you can, and sip lots of water and just keep swallowig. You can forget how to, and yas that doesn't seem possible, but it happens. With the removal of my larynx and not being able to swallow anything, not even sliva, I had to learn how to swallow, eat, use a spoon as everything just ran back out, ant talk all over again. Keep swallowing. This is a very rough road you will be going down with chemo and radiation it is said to be the second worst there is. But we have one of the highest survivial rates you can get. You will need to get an attitude you will beat this and anything that comes your way. Having humor will also help. As for your wife, tell her you love her and if you get a little short tempered to forgive you as you don't mean it you are just a little scared. Now for her, it is very hard n your loved ones and you need to be very honest and tell her how you feel. She will feel your pain and can't do anything about it and that will affect her. This is often harder on the caregiver than the person going through it. You both need to talk and share how you are really feeling, don't hold back to make the other one "feel Better" it does not help. It will make it a little easier on her. As others have said when you feel bad or sad just come here and vent. It does really help just putting it down on paper and letting it out. Better yet is we all have been there and do understand. We have many caregivers that can understand what your wife and family is feeling. 

    Your true friends will be there for you but there will be some that just drift away. Don't be upset with them as some just can't deal with someone having a major illness. That's why we are here. Oh and one other thing. Your doctor said cured in five years and that is correct. The NED is used before that time when the do get to say cured.

    We are open 24/7 and someone is almost always here. I will add you to my prayer list and keep you in my thoughts as well. You will beat this and when it is over, and recovery is in weeks and months not days as it is slow at times, but you will get through this, and it does change you as you don't take things for granted and really appreciate life even more.

    Bill

  • MrsBD
    MrsBD Member Posts: 615 Member
    Welcome

    Hopefully by the time you read this, you will be back at home after your treatments and thinking, "I can do this!" The next month is going to seem to drag on, but as you look back, you'll be surprised at how the time has flown. This group was a blessing to me a year ago during my treatment and I think you will find the advice and support you need, too.

  • jakesaround
    jakesaround Member Posts: 34
    First day of Chemoradiation in the books...

    Well it's official, day 1 of my Chemoradiation treatment is in the books. I really appreciate all the encouragement and all the time so many of you have taken to post on my thread and all the time so many of you took to share your story with me! it definitely helps to know that I am not alone in the struggle against cancer and its treatments. And you are right MrsBD, today was a small step towards being cured but I do have a stronger sense now that I can do this!

    The chemo took about 4ish hours of hydration, anti-nausea, steroids, and the 74mg/m^2 of cisplatin. Then a big lunch at 5 Guys where I got a burger and fries and ate every bite, I figure I better take advantage of my appetite while I still have it. Then a couple hours break and on to my first rad treatment. I was in the mask maybe 15min quick CT to get aligned then 5 and a half minutes of rads and it was over. That Tomo machine sounded like it had squirrels running around inside of it. it wasn't as impressive sounding as I thought it would be but obviously it's all about how effective it is that's really important.

    Then I went by the pharmacy and picked up some Flonase to use for rads in case my nose gets constricted or stopped up due to my current allergies. After that headed home to spend time with the family, had another big dinner and now winding down on the couch getting ready for sleepy time. I will use my dental fluoride trays tonight for the first time tonight and I have alo ready been rinsing with the salt and baking soda mixture (Which has also been helping my irritated throat from allergies). back to work in the morning and so on and on.

    I have felt well all day, I did have a slight headache after chemo and I feel 'full' of fluids but I know that I need all the hydration to help protect my kidney.

    Thank you guy and gals again and I really appreciate every prayer offered up on my behalf.

    Jake...

    Ps: the docs told me to hold off on taking extra supplements and synthetic vitamins as they may interfere with the Chemoradiation but they did say I could take 1 daily multi-vitamin and that I could get as much from natural sources as I want. So i guess I will still drink my carrot/beet/Apple juice mixture that my wife makes me twice per day. Did any of you hear something similar from your docs about synthetic vitamin, specifically vitamin A, E, and antioxidants? And I just wonder why it would be ok to get 1000% of your daily reccomended dose from carrot/beet juice but it's not ok to get 1000% from a synthetic source. I mean my understanding is that our bodies don't even process most synthetic vitamins so the chances of absorbing much from a vitamin would be pretty low. But I am obviously missing/not understanding something here. Any thoughts?

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member

    First day of Chemoradiation in the books...

    Well it's official, day 1 of my Chemoradiation treatment is in the books. I really appreciate all the encouragement and all the time so many of you have taken to post on my thread and all the time so many of you took to share your story with me! it definitely helps to know that I am not alone in the struggle against cancer and its treatments. And you are right MrsBD, today was a small step towards being cured but I do have a stronger sense now that I can do this!

    The chemo took about 4ish hours of hydration, anti-nausea, steroids, and the 74mg/m^2 of cisplatin. Then a big lunch at 5 Guys where I got a burger and fries and ate every bite, I figure I better take advantage of my appetite while I still have it. Then a couple hours break and on to my first rad treatment. I was in the mask maybe 15min quick CT to get aligned then 5 and a half minutes of rads and it was over. That Tomo machine sounded like it had squirrels running around inside of it. it wasn't as impressive sounding as I thought it would be but obviously it's all about how effective it is that's really important.

    Then I went by the pharmacy and picked up some Flonase to use for rads in case my nose gets constricted or stopped up due to my current allergies. After that headed home to spend time with the family, had another big dinner and now winding down on the couch getting ready for sleepy time. I will use my dental fluoride trays tonight for the first time tonight and I have alo ready been rinsing with the salt and baking soda mixture (Which has also been helping my irritated throat from allergies). back to work in the morning and so on and on.

    I have felt well all day, I did have a slight headache after chemo and I feel 'full' of fluids but I know that I need all the hydration to help protect my kidney.

    Thank you guy and gals again and I really appreciate every prayer offered up on my behalf.

    Jake...

    Ps: the docs told me to hold off on taking extra supplements and synthetic vitamins as they may interfere with the Chemoradiation but they did say I could take 1 daily multi-vitamin and that I could get as much from natural sources as I want. So i guess I will still drink my carrot/beet/Apple juice mixture that my wife makes me twice per day. Did any of you hear something similar from your docs about synthetic vitamin, specifically vitamin A, E, and antioxidants? And I just wonder why it would be ok to get 1000% of your daily reccomended dose from carrot/beet juice but it's not ok to get 1000% from a synthetic source. I mean my understanding is that our bodies don't even process most synthetic vitamins so the chances of absorbing much from a vitamin would be pretty low. But I am obviously missing/not understanding something here. Any thoughts?

    jake, i'm so glad day number

    jake, i'm so glad day number one is behind you!  it will go very fast now.  before long you will be ringing the bell and we will be doing our happy dance!!  you are so right, eat while you enjoy it and are able.  i never knew i could miss food so much :0(  anyway, you are now on your way, stay as positive as possible, stay hydrated and rested and swallow everyday, all day.  you don't want to lose that ability.  see you at the finish line.

    God bless you,

    dj

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Welcome to the Party Jake..

    Sorry I'm late to your party, but looks like you were and are well taken care of...

    John

  • phrannie51
    phrannie51 Member Posts: 4,716

    First day of Chemoradiation in the books...

    Well it's official, day 1 of my Chemoradiation treatment is in the books. I really appreciate all the encouragement and all the time so many of you have taken to post on my thread and all the time so many of you took to share your story with me! it definitely helps to know that I am not alone in the struggle against cancer and its treatments. And you are right MrsBD, today was a small step towards being cured but I do have a stronger sense now that I can do this!

    The chemo took about 4ish hours of hydration, anti-nausea, steroids, and the 74mg/m^2 of cisplatin. Then a big lunch at 5 Guys where I got a burger and fries and ate every bite, I figure I better take advantage of my appetite while I still have it. Then a couple hours break and on to my first rad treatment. I was in the mask maybe 15min quick CT to get aligned then 5 and a half minutes of rads and it was over. That Tomo machine sounded like it had squirrels running around inside of it. it wasn't as impressive sounding as I thought it would be but obviously it's all about how effective it is that's really important.

    Then I went by the pharmacy and picked up some Flonase to use for rads in case my nose gets constricted or stopped up due to my current allergies. After that headed home to spend time with the family, had another big dinner and now winding down on the couch getting ready for sleepy time. I will use my dental fluoride trays tonight for the first time tonight and I have alo ready been rinsing with the salt and baking soda mixture (Which has also been helping my irritated throat from allergies). back to work in the morning and so on and on.

    I have felt well all day, I did have a slight headache after chemo and I feel 'full' of fluids but I know that I need all the hydration to help protect my kidney.

    Thank you guy and gals again and I really appreciate every prayer offered up on my behalf.

    Jake...

    Ps: the docs told me to hold off on taking extra supplements and synthetic vitamins as they may interfere with the Chemoradiation but they did say I could take 1 daily multi-vitamin and that I could get as much from natural sources as I want. So i guess I will still drink my carrot/beet/Apple juice mixture that my wife makes me twice per day. Did any of you hear something similar from your docs about synthetic vitamin, specifically vitamin A, E, and antioxidants? And I just wonder why it would be ok to get 1000% of your daily reccomended dose from carrot/beet juice but it's not ok to get 1000% from a synthetic source. I mean my understanding is that our bodies don't even process most synthetic vitamins so the chances of absorbing much from a vitamin would be pretty low. But I am obviously missing/not understanding something here. Any thoughts?

    And the countdown begins....

    I was told the same thing about supplements....especially antioxidants.  It may be that they don't care when it comes to eating them, as they aren't as concentrated.  The reason they don't want you using them was explained to me like this:

    Antioxidants repair cells....but they help all cells repair themselves, including cancerous ones. 

    p

  • jakesaround
    jakesaround Member Posts: 34
    Thanks for the explanation on

    Thanks for the explanation on the antioxidents phran and for the welcome John.

    I will be going for rad #3 in about an hour or so and today is rad doctor visit day after treatment as well.

    I woke up this morning and I can already tell there is a fullness to my throat and a little dryness in my mouth. :(

    I was hoping it would be a couple weeks before I noticed any changes but I guess not.

    Nothing hurts yet so that is good and I am only experiencing a slight bit of queezyness from the chemo.

    Jake...

  • Kenny-
    Kenny- Member Posts: 98
    Cisplatin dosage

    Hi jakesaround! I also just went for my first round. At a very last minute change, I also opted for the weekly cisplatin dosage. 

     

    However, your dose, in my opinion, looks a bit unusual 74mg/m2. I'm not an oncologist, but the options I was offered was 100mg/m2 (3 weeks) or 40mg/m2 (weekly). Therefore, your numbers look a tad bit high for weekly. I'm guessing you had 74mg TOTAL cisplatin. Something you'd want to check for comparison. 

  • jakesaround
    jakesaround Member Posts: 34
    Kenny- said:

    Cisplatin dosage

    Hi jakesaround! I also just went for my first round. At a very last minute change, I also opted for the weekly cisplatin dosage. 

     

    However, your dose, in my opinion, looks a bit unusual 74mg/m2. I'm not an oncologist, but the options I was offered was 100mg/m2 (3 weeks) or 40mg/m2 (weekly). Therefore, your numbers look a tad bit high for weekly. I'm guessing you had 74mg TOTAL cisplatin. Something you'd want to check for comparison. 

    Hey Kenny, I believe you are

    Hey Kenny, I believe you are right my weekly dosing rate is the 40mg/m^2 and total dose last Monday was the 74mg.

    i hope your first day of treatment went well and that you are feeling good.

    ttyl

    jake...

  • kdot2003
    kdot2003 Member Posts: 143
    Hi

    Hi, I'm new too, share the same concerns.  I think I would vote for Chemo too.  Its all so overwhelming.  Huggs to you.

    Karen

  • jakesaround
    jakesaround Member Posts: 34
    First week done with mixed results...

    Just wanted to send an update on my first week of treatment. For me it was a mixed bag, the radiation was pretty uneventful as I had hoped. I could feel a little fullness in my throat and the outside of my neck was somewhat red and hot but all in all not bad. The chemo on the other hand hit me harder than I thought it would. I was feeling fine for the first 2.5 days then Wednesday after lunch the nausea hit. I think that's when I took my first anti nausea med (compazine) and I took it for the next 20 hours with little improvement. I called in for a new script and got zofran and started taking that as well for the next 24 hours with little improvement either. Finally on Friday i called again for something else and they said all they had left to give me was phenergan but they told me it would make me sleep so only take it when I could rest. So after not hardly eating or drinking for 2 days i finally took the phenergan last night and slept like a baby and woke up feeling normal with very little nausea. So amen I turned a corner on the sickness. I think this first week was a big learning curve for me as I had no idea what to expect and the docs just told me to use the anti nausea meds on 'as needed basis' I believe that was a mistake I should have been taking my anti nausea mess all along to try and stay ahead of the sickness. I am a little bummed cause I probably lost 3-4 lbs over the last 3 days because I couldn't eat or drink much. I really thought I was going to have to quit the chemo and just continue with the rads. Cause at 145lbs I can't stand to loose 3-4 lbs a week and make it through. I have been spending the day rebuilding my appetite and stomach and I am hoping for another good day of eating tomorrow.

    ttyl.

    jake...

  • Kent Cass
    Kent Cass Member Posts: 1,898 Member

    First week done with mixed results...

    Just wanted to send an update on my first week of treatment. For me it was a mixed bag, the radiation was pretty uneventful as I had hoped. I could feel a little fullness in my throat and the outside of my neck was somewhat red and hot but all in all not bad. The chemo on the other hand hit me harder than I thought it would. I was feeling fine for the first 2.5 days then Wednesday after lunch the nausea hit. I think that's when I took my first anti nausea med (compazine) and I took it for the next 20 hours with little improvement. I called in for a new script and got zofran and started taking that as well for the next 24 hours with little improvement either. Finally on Friday i called again for something else and they said all they had left to give me was phenergan but they told me it would make me sleep so only take it when I could rest. So after not hardly eating or drinking for 2 days i finally took the phenergan last night and slept like a baby and woke up feeling normal with very little nausea. So amen I turned a corner on the sickness. I think this first week was a big learning curve for me as I had no idea what to expect and the docs just told me to use the anti nausea meds on 'as needed basis' I believe that was a mistake I should have been taking my anti nausea mess all along to try and stay ahead of the sickness. I am a little bummed cause I probably lost 3-4 lbs over the last 3 days because I couldn't eat or drink much. I really thought I was going to have to quit the chemo and just continue with the rads. Cause at 145lbs I can't stand to loose 3-4 lbs a week and make it through. I have been spending the day rebuilding my appetite and stomach and I am hoping for another good day of eating tomorrow.

    ttyl.

    jake...

    Wake-up Call

    Uh, welcome to H&N tx, Jake. I started at 142 lbs and got down to 117 during tx. How much weight you lose is towards the bottom of the totem pole when it comes to priorities, now. Only thing that really matters is getting rid of the C, so don't even think about quitting the chemo- especially this early. No-brainer.

    I have mentioned numerous times that my regiment of C&R was different than everyone else's on this forum. I was not given the choice in regards to a PEG because of that regiment, and got one put in around 1+ week before tx started. Before the 2nd week of tx my sole intake of nutrition was via the PEG, along with use of Morphine and ice. They told me I was to put 3 cans of Jevity/day into the PEG to get the nutrients I needed, but there were many days I couldn't even get 2 to go down. AND, I only suffered from nausea early a couple times, due to sleeping for too long in bed/hoizontal. The nausea I had was the product of toxic congestion getting into my stomach, which does not mesh with the recliner concept, I know, except that when horizontal the build-up of nasal congestion perhaps became greater. And spitting out the bad congestion is critical- don't swallow any of it. I used to carry a little bucket with me to spit in all the time. 

    Compazine was there for those few times, early, but I made the sleep adjustments and the vomits went away. Might be possible you're trying to eat too much. I say this, because that food that comes back up with the nausea did you no good going into your mouth and stomach. Just think about that some. I remember others who made that mistake of not realizing that. Drink plenty of water, and eat as much as your body can handle without the vomits, but understand that we all lose weight going thru tx, and putting food into you that's just gonna be rejected in the form of vomit does you no good.

    And remember, Jake, that I'm 6-1/2+ years out to the good, now; and, others like Phrannie, who had a regiment more like your's, are also numerous years out to the good. Also, we've seen a few cases of recent where it allegedly came back within a year- when the likelihood is that it was never totally eradicated with the initial tx regiment if it's there so soon after tx. You're in the ring with big ol' C, Jake, and it's not thinking about winnning by decision, or even a KO- it's only thinking about killing you, so roll with tx's punches and make the necessary adjustments to get thru the tx regiment your Drs want you to go thru.

    kcass