Squmous cell cancer of cervical node with primary occult tumor

finz2lft
finz2lft Member Posts: 43
edited March 2014 in Head and Neck Cancer #1
Well, I am relatively new to this site, and it has been the best place for me to find out what I have in front of me. Many of you have replied to my questions, and I appreciate the honesty in the answers. I have one in regards to my chemo, and that is Cisplatin. I am haveing radiaton 5 times a week for 7 weeks, and Cisplatin for once a week for 7 weeks. I had the terrible 'MASK' fitting on Friday July 2, 2010. There was a lot of pressure on my chin and forehead, and I assume that is to account for any loss of weight. The nurses said the radiation would be bearable. My primary ENT, and Radiologist and his Nurse in fact think that they have found the "primary occult tumor" on the base of the tounge opposite my left cervical cancerous node. In fact my wonderful Nurse studied the PET scan and found the tumor. They tell me that this is great because it will somewhat reduce the amount of rads that I will have. But, they said the Cisplatin will wipe me out. I am from the south down around Cherry Point NAS, so could you all tell me what to expect and what I should look forward to in regards to the Cisplatin. I know everyone reacts differnetly. I have been told to drink plenty of water, and I do have the PEG. I am not scared of anything as I trust God to be my shephard, but I do like to have an idea of what to look out for. I really enjoy the responses from Skiffin16, and he is honest with his assimilations. But, I would appreciate insight from anybody that can give me an idea of what to look for. I feel lucky in that my cancer has not spread to my throat or lungs and seems to be somewhat localized at this point. Thank you to everyone, and God Bless you on a Happy July Fourth. I am ready to kick this "C"'s butt all the way to Key West where I am treating myself too when I recover with my girlfriend for a luxurious 10 day vacation. Love you all!!!

Comments

  • Hal61
    Hal61 Member Posts: 655
    #2
    Cisplatin
    Hello Finz, I also had 35 radiation treatments, but only three Cisplatin. Cisplatin is strong stuff (platinum), and when I asked my medical onc how strong it was he just pointed to the sky and looked up. I took that to mean it was strong. He said it was the heavy hitter of chemo drugs. My biggest problems during treatment came two days after each treatment. The nausea and short term "chemo head" seemed to hit me then. I felt like I was in a big metal drum, and too much sound or volume would get to me so I had to hide in the bedroom each time. That doesn't last, and there are a number of anti nausea pills they doctor can give you. It's tough, but it's tough of the "c" also, that's why they use it. So again, my biggest complaints were nausea, and a feeling of general wierdness. The terrible mask, I found, was simply not so terrible after a short time. I lost some weight, and the tightness was reduced. Before long I got used to putting my thoughts elsewhere and the time slipped by without much discomfort each session. (At first mine was so tight it left a "waffle" pattern on my cheeks and forehead each time)
    You'll get through, and the things that make it tough will enable you to beat the disease.
    Hal61
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #3
    Cisplatin
    Are you also getting FU5? Seems that most of us do.
    My delivery of Cisplatin/FU5 was different, so others are better to advise you on the great expectations. Is nasty stuff, but tolerable w/help.

    As far as finding the Primary- yes. I had a 2nd/11th-hour biopsy, ordered by my Rad Dr. to have my ENT do, in hopes of finding my Primary. No such luck with me. Was told that if they had found it- then the number of places I would get rad-zapped would be fewer. So, if it is in fact your Primary, finz2lft- that's a good thing for you, and will mean you get the rads in fewer places.

    As for what to physically expect- mouth sores will happen, for which Magic Mouthwash will help. My sores extended to my lips, for which Aquaphor helped. Would advise getting meds for both extremes of regularity (Dulcolax and Maalox). And stay on top of the pain situation- pain adds stress to the body, which it doesn't need. And I got Compazine ahead of time to deal with the vomits, and about 15 gallons of bottled water before the first treatment. Likely you won't feel much like shopping, so stock-up on the necessities- like toilet paper and kleenex, and anything else you don't have a 3-month supply of.

    Keep us updated, and the best of luck to you.

    kcass
  • JUDYV5
    JUDYV5 Member Posts: 392
    #4
    Squamous Cell -radiation, cisplatin and g-tube
    Yes, me too. I got very dehydrated because of my inablity to hold things down after cisplatin. When we figured this out I got hydration 2x a week during my treatments.
    It was something I actually looked forward to.
  • denistd
    denistd Member Posts: 597
    #5
    JUDYV5 said:

    Squamous Cell -radiation, cisplatin and g-tube
    Yes, me too. I got very dehydrated because of my inablity to hold things down after cisplatin. When we figured this out I got hydration 2x a week during my treatments.
    It was something I actually looked forward to.

    Cistplatin
    I had the Cistplatin high dose 1 treatment every three weeks, it had no effect on me in so much that I did not get sick or react to it, it did do a job on my blood counts for a while and left some minor damage to my kidneys. I was given anti-nausea meds that worked perfectly, never got sick, I am left with some tinnitus and hearing loss but nothing to bother me. So prepare for the worst and hope for the best.
  • Landranger25
    Landranger25 Member Posts: 210 Member
    #6
    denistd said:

    Cistplatin
    I had the Cistplatin high dose 1 treatment every three weeks, it had no effect on me in so much that I did not get sick or react to it, it did do a job on my blood counts for a while and left some minor damage to my kidneys. I was given anti-nausea meds that worked perfectly, never got sick, I am left with some tinnitus and hearing loss but nothing to bother me. So prepare for the worst and hope for the best.

    Cocktail here
    BOT tumor with mets to one lymph. 3 chemos and 33 rads. Cisplatin on Monday of chemo weeks and pump with 5FU for next 96 hours. (till Friday) 2 weeks rest then do it again, all the while rads every day but Sat and Sun. Chemo weeks I had no concentration. Couldn't watch a 1/2 hour TV show or even read the paper. Couldn't retain more than 1 paragraph of info at a time. Spent a lot of my awake time just walking. No desire to eat. Mouth and tongue really sore and raw. Tried to keep sipping water so as in the words of Onco man, "Whatever you do, don't lose your swallow". Glad I didn't, apparently very difficult to get back. Tinnitus all the time now but not intolerable. Some days worse than others. For me I equate it like this. If you have ever had like a 3 day flu that really socked you good. Nausea, weak and shakey, chills and just generally feel awful, that will be close. It's just going to stick around longer than 3 days. Good luck. You can do this.

    Mike
  • davidgskinner
    davidgskinner Member Posts: 81
    #7
    denistd said:

    Cistplatin
    I had the Cistplatin high dose 1 treatment every three weeks, it had no effect on me in so much that I did not get sick or react to it, it did do a job on my blood counts for a while and left some minor damage to my kidneys. I was given anti-nausea meds that worked perfectly, never got sick, I am left with some tinnitus and hearing loss but nothing to bother me. So prepare for the worst and hope for the best.

    More on Cisplatin
    I finished 35 radiation treatments at the end of March (The mask didn't bother me at all; just mentally "checked out" while it was on) and had three rounds of cisplatin. Each time with chemo was different for me as far as nausea and all that. The last round was definitely the worst...I had to go to the ER because I was so sick for so many days.
    Now I have some ringing in the ears, but that doesn't bother me too much. I have developed some neuropathy in my feet and hands that I believe is caused by the cisplation that does bother me quite a bit. It makes standing and walking very uncomfortable and painful. I am told most people who have cisplatin chemo that get these symptoms get them during the treatment then they go away afterward. That hasn't happened for me. I didn't have anything like this during chemo or a couple months after. They just kind of came on. I am hoping they will just go away, or the different drugs I am trying with the neurologist will help get get them under control.
    Having said all that the trade off is definitely worth it. My taste and saliva are coming back, my stamina is coming back, and best of all I am NED. So, until they come up with something better IMRT radiation and chemo are pretty much the way to go, if you ask me.
  • micktissue
    micktissue Member Posts: 430
    #8
    davidgskinner said:

    More on Cisplatin
    I finished 35 radiation treatments at the end of March (The mask didn't bother me at all; just mentally "checked out" while it was on) and had three rounds of cisplatin. Each time with chemo was different for me as far as nausea and all that. The last round was definitely the worst...I had to go to the ER because I was so sick for so many days.
    Now I have some ringing in the ears, but that doesn't bother me too much. I have developed some neuropathy in my feet and hands that I believe is caused by the cisplation that does bother me quite a bit. It makes standing and walking very uncomfortable and painful. I am told most people who have cisplatin chemo that get these symptoms get them during the treatment then they go away afterward. That hasn't happened for me. I didn't have anything like this during chemo or a couple months after. They just kind of came on. I am hoping they will just go away, or the different drugs I am trying with the neurologist will help get get them under control.
    Having said all that the trade off is definitely worth it. My taste and saliva are coming back, my stamina is coming back, and best of all I am NED. So, until they come up with something better IMRT radiation and chemo are pretty much the way to go, if you ask me.

    I'm Ned
    Cisplatin x3 left me with neuropathy (numbness) in fingers and toes, tinnitus that is constant, and hearing loss, all of which may or may not be permanent. The good news? I've been deemed no evidence of disease. Just call me Ned!

    I never got sick from cisplatin but the fatigue was brutal and lingers still (radiation contributes some to fatigue as well).

    Best,

    Mick
  • Fire34
    Fire34 Member Posts: 365
    #9
    Mask Fitting
    Finz
    For me it was not the fitting it was when I first got to the table. When they strapped that darn thing on I thought it was someone elses. It was so tight as Hal said it left marks. They were able to give me 6mm more space which really didn't help much. Anymore the programming of the machine would have been off. After my third week I was refitted due to my weight loss and it was also sop where I went. Sorry I couldn't help with the Cisplatin question, I had a different cocktail.
    And that is what I like to hear is that Positive Mental Attitude!!!
    Best Wishes & Prayers
    Dave
  • Hal61
    Hal61 Member Posts: 655
    #10
    micktissue said:

    I'm Ned
    Cisplatin x3 left me with neuropathy (numbness) in fingers and toes, tinnitus that is constant, and hearing loss, all of which may or may not be permanent. The good news? I've been deemed no evidence of disease. Just call me Ned!

    I never got sick from cisplatin but the fatigue was brutal and lingers still (radiation contributes some to fatigue as well).

    Best,

    Mick

    Tinnitus
    Hi Mick, I'm going through the same tinnitus issues. FYI, and anyone having this symptom post treatment, I'm trying the latest, greatest over-the-counter treatment. It's called "Qietus". Frankly, I went through this with my girlfriend last year when she suffered an infection, sudden hearing loss, and resultant tinnitus. We tried a number of non-prescription cures/aids and visited a leading ear guy at Stanford. This is the only one I'm going to try, and it was mentioned by my medical onc. Haven't received it yet, but if I get any measurable relief, I'll post. My brother has had it since Viet Nam when he manned and fired big guns off a carrier--military didn't provide any ear protection; and he and his brain have learned to ignore it. Here's hoping it goes away, or our brains tune it out. I think you said you play the sax, so that's extra tough. Clarence Clemons is my contemporary favorite because I favor music over technical wizardry, Harry James over Al Hirt.
    best, Hal
  • tonyanddenise
    tonyanddenise Member Posts: 70
    #11
    your treatment and mine
    Hello. I had my mask the 29th of may. primary was in my tonsil. they were removed may 21st.
    I have yet to have my pegs installed however it is scheduled. Our treatment will be very closely timed. I look forward to comparing notes. I am having the cisplatin and taxol with 7 weeks of rad. fun fun! I did almost one up you this week though! I got home from Ft. Lauderdale yesterday, was in Miami the day before. I took my 2 boys out fishing. I hope to get through this by fall and then when the cold Ohio winds blow go to the keys and fish. I look forward to seeing you there!
  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #12
    finz2lft, you have got a
    finz2lft, you have got a great plan!!! Put your trust in God and then celebrate with a vacation. I couldn't think of a better plan for any of us. You are going to do fine. I can't give info in the chemo as I only had rad. Some side effects of the rad are a swolle throat, trouble swallowing, very burnt area of the rad, loss of taste from loss of tastebuds, unable to produce spit b/c you will lose some of the saliva glans. I used Aquaphor for the burn (very bad) to my neck. Others here have used other stuff b/c the Aquaphor doesn't work for everyone. There is a thread here about burn medicines. I wish you the very best and can't wait to see pics from your vaca. :0)
    God bless,
    debbie
  • micktissue
    micktissue Member Posts: 430
    #13
    Hal61 said:

    Tinnitus
    Hi Mick, I'm going through the same tinnitus issues. FYI, and anyone having this symptom post treatment, I'm trying the latest, greatest over-the-counter treatment. It's called "Qietus". Frankly, I went through this with my girlfriend last year when she suffered an infection, sudden hearing loss, and resultant tinnitus. We tried a number of non-prescription cures/aids and visited a leading ear guy at Stanford. This is the only one I'm going to try, and it was mentioned by my medical onc. Haven't received it yet, but if I get any measurable relief, I'll post. My brother has had it since Viet Nam when he manned and fired big guns off a carrier--military didn't provide any ear protection; and he and his brain have learned to ignore it. Here's hoping it goes away, or our brains tune it out. I think you said you play the sax, so that's extra tough. Clarence Clemons is my contemporary favorite because I favor music over technical wizardry, Harry James over Al Hirt.
    best, Hal

    Hal
    Hi Hal. Sax is one instrument I DON'T play. I am looking into getting something called the musicians ear plug. It's supposed to discern a bit better than regular ear plugs so that the music is not differentially muted. We'll see.

    Would love to know how Qietus works for you.

    Best,

    Mick

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