in treatment for metastatic squamous cell ca of 2 out of 14 nodes in neck txna2mo

roygirl1
roygirl1 Member Posts: 3
edited March 2014 in Head and Neck Cancer #1
Hi, I'm having my 16 th IMRT today. Had 2nd cysplatin chemo 2 days ago. Having heartburn but no nausea or vomiting. Lucky, huh? I'm having thinning of my hair and wonder if I should get rid of it or wait. this is messy. So far no feeding tube. I'm very tired and don't feel like doing much. I'm sure this is normal. I hope for a cure but since the primary was not found. will it recur?

Comments

  • ljoy
    ljoy Member Posts: 94
    #2
    Primary not found
    I found my cancer as a lump under my right ear. It was surgically removed and diagnosed as squamous cell ca. They could not initially find the primary but stated the treatment would be about the same. Basically from the level of the eyes to the base of the neck.

    Lucky I request a referral to M.D. Anderson Cancer Center in Houston. They were able to find the primary in my right tonsil. 2 rounds of cisplatin and 39 rads for treatment. I'm three years post treatment and cancer free.

    They have very good success rates with Squamous Cell. I would think the odds are in your favor for successful treatment. As we all say, everyone is different. Your doctors should be able to give you a prognosis.

    Stay strong for the rest of your treatments and we will all pray for your full recovery.
  • roygirl1
    roygirl1 Member Posts: 3
    #3
    ljoy said:

    Primary not found
    I found my cancer as a lump under my right ear. It was surgically removed and diagnosed as squamous cell ca. They could not initially find the primary but stated the treatment would be about the same. Basically from the level of the eyes to the base of the neck.

    Lucky I request a referral to M.D. Anderson Cancer Center in Houston. They were able to find the primary in my right tonsil. 2 rounds of cisplatin and 39 rads for treatment. I'm three years post treatment and cancer free.

    They have very good success rates with Squamous Cell. I would think the odds are in your favor for successful treatment. As we all say, everyone is different. Your doctors should be able to give you a prognosis.

    Stay strong for the rest of your treatments and we will all pray for your full recovery.

    thank you
    ljoy, thank you for the encouragement. I was told that the prognosis was good. I do have hope that after treatment I'll have no problems.
  • paula002
    paula002 Member Posts: 45
    #4
    Hair..
    Hello Roygirl,

    Regarding the hair, I went through radiation and cysplatin. Had long hair and cut it short. I was expecting to go bald but I didn´t.
    My hair thinned out but I still had lots of it.
    However, because of the radiation, I lost all hair in the back of the head - about midway to bottom.
    You go girl.... All the best to you,

    Paula
  • suzhiles
    suzhiles Member Posts: 8
    #5
    IMRT and chemo
    I started my similar treatment about 2 years ago. Didn't have heartburn or nausea either which may have been due to the drugs I took or, like you, just lucky. However, toward the end of IMRT radiation I was throwing up as soon as they finished the treatment...in the room itself. I had 33 treatments in all.

    As soon as they disconnected me from the mask, I sat up and they provided me with a wastebasket. By contrast, I had no reaction to chemo aside from, of course, the depletion of my immune system and then got MRSA. Also had feeding tube although I asked for it a little late in the process. Hair thinned as well, especially at the nape of my neck.

    Why wasn't the primary found? That doesn't sound right. Important thing to remember is despite some side effects of radiation (and they vary with every individual depending on the location of the radiation), I'm still here and passing my post radiation and chemo check-ups. as well as radical neck dissection surgery, with flying colors. You will, too.
  • suzhiles
    suzhiles Member Posts: 8
    #6
    IMRT and chemo
    I started my similar treatment about 2 years ago. Didn't have heartburn or nausea either which may have been due to the drugs I took or, like you, just lucky. However, toward the end of IMRT radiation I was throwing up as soon as they finished the treatment...in the room itself. I had 33 treatments in all.

    As soon as they disconnected me from the mask, I sat up and they provided me with a wastebasket. By contrast, I had no reaction to chemo aside from, of course, the depletion of my immune system and then got MRSA. Also had feeding tube although I asked for it a little late in the process. Hair thinned as well, especially at the nape of my neck.

    Why wasn't the primary found? That doesn't sound right. Important thing to remember is despite some side effects of radiation (and they vary with every individual depending on the location of the radiation), I'm still here and passing my post radiation and chemo check-ups. as well as radical neck dissection surgery, with flying colors. You will, too.
  • jkinobay
    jkinobay Member Posts: 298 Member
    #7
    Hang in there
    Sounds like you are almost exactly in the average category for what you are going through. My story, almost a carbon-copy of ljoy's, neck cyst removed, turned out to be lymph node, tested positive for SCC, MD Anderson second-opinion on the Pathology found HPV-16 which points to the tonsils, tonsillectomy found left tonsil in really bad shape. MDA saved my life because my ENT wanted to just wait and do monthly exams. Needless to say, he has been replaced.

    The "good" thing about SCC is that it responds well to treatments and has a high success rate. Also, my Docs said that mine being HPV-16 positive greatly increased my 5 year survival probability..........to the 85% or more range. So, somewhat of a silver lining.

    Thinning hair, not a big deal in my case. I am 59 and fortunate to have a lot of hair but mine thinned less than I'd say 25% and it all came back to 100% within probably 90 days post treatments. For reference, I had 7 weekly Cisplatin and 35 daily IMRT treatments. I did have the PEG tube and was thankful for it. Luckily I got off of it within 2 months, but it really made a difference in maintaining nutrition and, equally importantly, hydration. Highly recommend one to anybody going through this.

    Hang in there, you'll get through this very tough but very important battle. Modern technology is amazing and on your side. God Bless, get well, stay well.............JK
  • jagged
    jagged Member Posts: 55
    #8
    Treatment
    Roygirl1,

    I had a tumor of unknown primary wrapped around my esophogus. The unknown primary is not that strange. It is better to know the primary, of course, as they can then target the treatment better. But, one of my doctors said that the standard practice is to treat the unknown as a lung cancer.

    My treatment included 36 daily radiations and four rounds of carboplatin / taxol administered weekly (three weeks on, one week off). Both drug side effects said hair loss. My doctor guarrenteed it, so I shaved it. Hair loss is just not fun when you are a female. Wrapping a doo rag around your head does not give you the same kind of cool a guy gets. Since the drugs you are having do not have hair loss as a side affect, I would hold off shaving it until you talk with your doctor.

    For me, the throat burn did not start until about the fourth week into radiation and it lasted about four weeks after treatment ended. No plug or tubing. I needed to lose 20 pounds, lost 22. Tough way to lose it, but that was a positive that came from this.

    My way of handling cancer is to ignore it until it is in my face. Ignore is way different then deny. I still follow up with doctors, etc. as they help give balance to my tendency to be a hypocondriac. You just live life to its fullest, every day and don't get psyched out with daily ache and pain. This year, I had a cancer reoccurance and had a second opinion. He commented on how well the prior tumor had cleared up. Sorry, guess there is no guarentee.

    Stay strong and best wishes to you and your life journy.

    --Jag
  • roygirl1
    roygirl1 Member Posts: 3
    #9
    jagged said:

    Treatment
    Roygirl1,

    I had a tumor of unknown primary wrapped around my esophogus. The unknown primary is not that strange. It is better to know the primary, of course, as they can then target the treatment better. But, one of my doctors said that the standard practice is to treat the unknown as a lung cancer.

    My treatment included 36 daily radiations and four rounds of carboplatin / taxol administered weekly (three weeks on, one week off). Both drug side effects said hair loss. My doctor guarrenteed it, so I shaved it. Hair loss is just not fun when you are a female. Wrapping a doo rag around your head does not give you the same kind of cool a guy gets. Since the drugs you are having do not have hair loss as a side affect, I would hold off shaving it until you talk with your doctor.

    For me, the throat burn did not start until about the fourth week into radiation and it lasted about four weeks after treatment ended. No plug or tubing. I needed to lose 20 pounds, lost 22. Tough way to lose it, but that was a positive that came from this.

    My way of handling cancer is to ignore it until it is in my face. Ignore is way different then deny. I still follow up with doctors, etc. as they help give balance to my tendency to be a hypocondriac. You just live life to its fullest, every day and don't get psyched out with daily ache and pain. This year, I had a cancer reoccurance and had a second opinion. He commented on how well the prior tumor had cleared up. Sorry, guess there is no guarentee.

    Stay strong and best wishes to you and your life journy.

    --Jag

    Thank you
    Thanks very much for the support. Hair loss is the least of my concerns. It appears as though it will only thin. Last Mon. I was put on a rest from IMRT. couldn't speak, very sore throat, couldn't eat either. PEG tube in on Wed. Haven't used it yet. Swallowing and speaking is easier with the rest. Will see Rad oncologist tomorrow . Hope to restart. I will stay strong and beat this thing.
  • suzhiles
    suzhiles Member Posts: 8
    #10
    roygirl1 said:

    Thank you
    Thanks very much for the support. Hair loss is the least of my concerns. It appears as though it will only thin. Last Mon. I was put on a rest from IMRT. couldn't speak, very sore throat, couldn't eat either. PEG tube in on Wed. Haven't used it yet. Swallowing and speaking is easier with the rest. Will see Rad oncologist tomorrow . Hope to restart. I will stay strong and beat this thing.

    IMRT rest
    Hair loss wasn't much of a concern to me either and it just thinned at the nape of my ncek. I begged for rest from IMRT because it was so intensive that I was throwing up after each treatment toward the end. PEG tube is okay even though I had it inserted after I had already started radiation treatment and was on it for 5 months. You just have to adjust and the focus is getting nutrition into your body while you are going through treatment. In the end, you will beat it.

    Worst part for me afterwards is after I had theoretically beat the cancer, I had the same symptoms as before when I had it: sore throat, ear infection, etc. But the cancer was gone.

    So hang in there.

    Suzanne
  • Unknown
    Unknown
    #11
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