6 months down the road; is this normal?

jh davis
jh davis Member Posts: 8
in Head and Neck Cancer #1

Ladies and Gents, I finished 35 rad and 7 Cisplatin treatments mid January; I was doing ok until about 6 weeks ago when the Limphedema started getting real sore in my upper and lower Jaws; I'm getting worked on once or twice a week by PT and others trying to open up the drainage, plus I'm wearing a head wrap, but it's sure dibilitaing, especially at night.  I'm also dealing with a diverticulum in my esophegus down by my epiglotis where the tumor was; I may have to get surgery on it; anybody delt with that?  Plus I'm having a heck of a time gaining weight, I lost about 35 lbs, but having a hard time gaining any of it back.  I drinking all these hi cal shakes and eating what I can, but just treading water.  My wife is getting fed up, any ideas other than just trying to shove down more food and drink?

I certainly know my issues pail in comparison to some of the stories I've read on hear, but I thought I'd still throw it out there.  Thank you very much for your thoughts.

JD

Comments

  • OKCnative
    OKCnative Member Posts: 326 Member
    edited June 2018 #2
    I've been out of treatment

    I've been out of treatment (35 rads, 3 mega-doses of Cisplatin) since about end of Sept.

    I initially suffered from Lymphedema all around my neck too. I even posted about it when I noticed it. I really hated it - looked awful (turkey gobbler neck) and was very sore. Doctor wanted to do PT and have me wear this neck contraption. To me, that was just more stuff to charge me money for and make me feel like a patient (sort of like when they tried and failed to get me to get a feeding tube and chemo port). So, I kept asking around and was told the best medicine for so many things in life applies to Lymphedema too - good old physical exercise. I was told to increase my activity and cardio workout in the morning specifically. And then again at night before going to bed. I'm not talking about taking a walk around the neighborhood. I began going to cycling classes, cardio step classes and boot camp. I was also told to keep my neck covered if it was below 65 degrees outside and to massage my neck in the mornings during my drive to work (found great neck drainage massage videos on YouTube). 

    Worked like a charm. Within a month or so ALL signs of Lymphedema were gone. This increased exercise routine also worked completely on my very painful neuropathy in my legs, hands and top of my head.

    As for weight.... I lost probably close to 50 pounds during treatment. I'm now back to where I have to watch what I eat or I will put too much weight on.

    I was fortunate in that I could eat whatever I wanted very soon after treatment ended. With the increased exercise came increased eating! I now monitor my calories to keep me at a healthy weight of 175 pounds.

  • OKCnative
    OKCnative Member Posts: 326 Member
    #3
    I've been out of treatment

    Opps - repost.

  • Mavish
    Mavish Member Posts: 93 Member
    #4
    I found swimming helpful

    I had some lympodema not very intensive. A Massage Therapist though me how to do self lymph massage. There are videos on the net. I also found swimming in a salt water pool and ocean very helpful. It requires alot of patience. Wish you a good luck.

     

  • jh davis
    jh davis Member Posts: 8
    edited June 2018 #5
    OKCnative said:

    I've been out of treatment

    I've been out of treatment (35 rads, 3 mega-doses of Cisplatin) since about end of Sept.

    I initially suffered from Lymphedema all around my neck too. I even posted about it when I noticed it. I really hated it - looked awful (turkey gobbler neck) and was very sore. Doctor wanted to do PT and have me wear this neck contraption. To me, that was just more stuff to charge me money for and make me feel like a patient (sort of like when they tried and failed to get me to get a feeding tube and chemo port). So, I kept asking around and was told the best medicine for so many things in life applies to Lymphedema too - good old physical exercise. I was told to increase my activity and cardio workout in the morning specifically. And then again at night before going to bed. I'm not talking about taking a walk around the neighborhood. I began going to cycling classes, cardio step classes and boot camp. I was also told to keep my neck covered if it was below 65 degrees outside and to massage my neck in the mornings during my drive to work (found great neck drainage massage videos on YouTube). 

    Worked like a charm. Within a month or so ALL signs of Lymphedema were gone. This increased exercise routine also worked completely on my very painful neuropathy in my legs, hands and top of my head.

    As for weight.... I lost probably close to 50 pounds during treatment. I'm now back to where I have to watch what I eat or I will put too much weight on.

    I was fortunate in that I could eat whatever I wanted very soon after treatment ended. With the increased exercise came increased eating! I now monitor my calories to keep me at a healthy weight of 175 pounds.

    wow

    Thank you for taking the time to drop a note; that's all very interesting; firstly, I agreed to the port and feed tube as it seemed pretty routine, as it turns out, the night before I was to start treatments my tumor hemorrhaged and I spent 3 days in the hospital, very fortunate I had the feed tube. 

    I went from 205 to the 165 I"m at now, I'm pretty weak, but I'll get on my excercises more, that sounds like a plan, but I know I couldn't do what you did right at this moment.  That will probable help with my weight also, I'm struggling to eat enough to gain any weight even with Ensure + and the other stuff.

    Thanks again for your thoughts, appreciate it.

    JD

  • jh davis
    jh davis Member Posts: 8
    #6
    wbcgaruss said:

    Lymphedema I think we all get it

    After the rads and chemo I think we all get it.

    Not sure of the time frame anymore but I think I did not have it in 6 months.

    Check with your nurse or doctor and find out if this is unusual.

    I believe everyone and their case may be a little different so check with them and they

    can tell you if there is a reason for it

    I had several treatments for the lymphodema to get me started and I was given a list with

    diagrams to do the drainage exercises at home then.

    Seemed to work well but with cancer treatments, and recovery especially, it is a slow process.

    You can find Lymphodema exercises on the net also.

    And OKCnative is right the more moving around you can do like walking, exercise, work,

    whatever it is the physical activity helps the natural drainage process.

    Good luck with your progress hang in there.

    As far as not gaining weight there are some others on here that have rcipes for high calorie smoothies and such.

    Whatever your intake get as many calories in as small amout as possible in that respect the more you get in the better.

    Did a search on the site see if you can find help in these posts---

     

    https://csn.cancer.org/forum/164/search?t=losing+weight&k=

    thx

    wbcgaruss, thanks much for your thoughts, I'm on it, I have some excercises, but will look for more.  Thanks again, JD

  • jh davis
    jh davis Member Posts: 8
    edited June 2018 #7
    interesting

    Mavish, I did not think about swimming, but makes sense; sounds like most any physical activity helps.  I'm still kinda weak, but will do what I can.  Thanks again, JD

  • debbiel0
    debbiel0 Member Posts: 134 Member
    #8
    I totally understand the

    I totally understand the weight gain issue! I lost 65lbs and now 1 yr since My treatment started I have gained 1lb back. Yup a big 1. I finally was able to have my feeding tube removed last week as my weight is finally stable.

    Here are a couple of tricks I used to add calories without adding volume. 

    Cook cream of wheat in milk instead of water. Adds 130 cal.

    Add Hemp Hearts to cereal, soup, smoothies. 3 tbs = 170 cal

    Puddings, add Chia seeds or Hemp Hearts

    add nut butter to smoothies

    Hemp Hearts can be expensive in grocery stores,  where I am, Costco has them at a very resonable price.

    Hope this helps a little. 

     

    Deb

     

  • wbcgaruss
    wbcgaruss Member Posts: 2,484 Member
    #9
    Lymphedema I think we all get it

    After the rads and chemo I think we all get it.

    Not sure of the time frame anymore but I think I did not have it in 6 months.

    Check with your nurse or doctor and find out if this is unusual.

    I believe everyone and their case may be a little different so check with them and they

    can tell you if there is a reason for it

    I had several treatments for the lymphodema to get me started and I was given a list with

    diagrams to do the drainage exercises at home then.

    Seemed to work well but with cancer treatments, and recovery especially, it is a slow process.

    You can find Lymphodema exercises on the net also.

    And OKCnative is right the more moving around you can do like walking, exercise, work,

    whatever it is the physical activity helps the natural drainage process.

    Good luck with your progress hang in there.

    As far as not gaining weight there are some others on here that have rcipes for high calorie smoothies and such.

    Whatever your intake get as many calories in as small amout as possible in that respect the more you get in the better.

    Did a search on the site see if you can find help in these posts---

     

    https://csn.cancer.org/forum/164/search?t=losing+weight&k=

  • tbret
    tbret Member Posts: 76 Member
    #10
    Came and went

    About two months out I got the turkey neck.  My sister (bless her sensitivity) asked me if I could have it removed!!!!   I saw a doctor on a 3-month follow-up and they sent me to PT.  It took two weeks to get to PT and by the time I got there my neck had already started finding new drainage paths and had reduced a lot, all by itself.  I had to show the therapist (nice lady) a "selfie" for her to see how bad it had gotten.

    I still (19 months out) have lymphedema and I do a nightly massage routine to reduce it from "not much" to "almost nothing."  AND...

    Just as others have said, the more physically active I am (including talking; never a problem with me) the less edema there is for me to have to squish out of my neck.  Don't ask me what planting rose bushes has to do with my neck, because I don't know.  It isn't like I'm digging the holes with my teeth or chewing the plastic pots off of the plants from the nursery, but being active, sweating (the key?), and "doing stuff" minimizes it for some reason.

    Weight:  ... just last night I saw an email I wrote to someone a couple of years ago <just before I was diagnosed> about how happy I was to have lost 25 pounds. If I had only known I was going to end-up losing another 25-30 involuntarily I might not have been so happy about it.  I had trouble (sometimes still do) getting 2,000+ calories of "good food" in me during a day.  I found that I could drink a medium Baskin-Robbins chocolate chip milkshake. (the chips are bitter-sweet and I can taste "bitter" a bit and definitely the sugar in the ice cream)  That's about 1,000 calories.  Compare 16oz of Ensure to 16oz of Baskin-Robbins and guess which has more calories!

    I do take my vitamins and try to eat food that is good for me up to the point I have a milkshake.

    It's also expensive to get someone else to make a shake, so I started making my own.  I don't "enjoy" the shake like I did when I was twelve, but I can drink it.  Pretty soon after starting that my weight started up.   Now I have a milkshake maybe once or twice per week because if I had one every night I'd be too heavy (again).   If I gain any weight from here (183.5 lbs, 36" waist) I will cut out the shakes entirely. 

    Weight gain?  It can be done!!

    The head wrap-thing.  It was suggested for me.  I said, "Uh, what's Plan B?"  Plan B was that I did the massage and we "saw" if I needed the wrap.  I didn't.  I like Plan B.

    I have no knowledge of or experience with the surgery you are contemplating.  Whatever you decide to do about that, break a leg!!! 

    I am enjoying every day of life (even the ones that suck) / it is hard to see the edema even on bad days / lots of sunscreen on my face and neck lets me plant a lot of flowers to later stop to smell.

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