Need Tips....Treatment started yesterday..

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cureitall66
cureitall66 Member Posts: 913
edited October 2012 in Head and Neck Cancer #1
Hi everyone! Well, yesterday was the start of treatment. Although I've done plenty of research on the cancer...now, as a caregiver, I need some help staying ahead as much as possible to the side effects and taking some preventative measures (if there are any)to treatment.

Special thanks to Skiffin16(John)in being my email buddy and sharing as much as he can with me when he can. I know everyone is different and had different experiences....so give me some tools please.. : )

So this is what I'm looking for....

1. What do we need to expect in these next few weeks and when does it start to get more problematic?

2. When do we take the anti-nausea for chemo? (he will only have chemo once a week for 7 wks)

3. When do we start any pain drugs? Start ahead before it starts(when is that?)...or wait?

4. Got some Aloe Vera gel for the skin....do we put that on right after the radiation? ( I understand nothing should be on the skin prior to treatment of rad)Any other lotions to combine with or seperately?

Skiffin16(John) has already told me hyrdration is very important...so we have plenty of fluids ready. Thank you John. : )

I know the staff will be helpful in combating these problems as they arise, but we'd like to stay ahead of the game if you will.

As a caregiver, I'd just like to help minimize the difficulties physically so we can focus on keeping our mental state positive and not let this part drag us down....just my "positive thinking" going here. : )

Thanks guys...Love you all and God Bless each and every one of you during your journey as well.

Comments

  • cureitall66
    cureitall66 Member Posts: 913
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    I want to add...
    This morning he felt a little stomach ache (could be nerves), and a little flush.(is that normal?) Seems to be gone right now though...
  • VivianLee5689
    VivianLee5689 Member Posts: 546
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    I want to add...
    This morning he felt a little stomach ache (could be nerves), and a little flush.(is that normal?) Seems to be gone right now though...

    Hoping for a good morning
    I hope your day turns out to be a good one. I know how stressful this is for you. I can only imagine his stress level. I am praying a special blessing for you two.
  • hwt
    hwt Member Posts: 2,328 Member
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    Aquaphor
    The biggest culprit I had to deal with was sores on my lips. The Rad Onc gave me Aquaphor (can also purchase at Walgreens). It helped after the sores appeared but hindsight, I wonder if I had glopped it on my lips prior to each treatment if it might have prevented the sores from ever showing up. The ONC gave me scripts for chemo and I followed the instructions on when to take. As for the pain meds, I took at the onset of any pain and did not wait to see if the pain would worsen. I was told to gargle w/salt water and baking soda but I got the sores week one and when I tried to gargle it was too painful, again, wish I had tried earlier. Hydration & Nutrition!!!
  • blackswampboy
    blackswampboy Member Posts: 341
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    you can do this!

    we all differ, but my take:
    1. radiation effects add up gradually, and some might not show up until weeks after treatment ends. first few weeks shouldn't be difficult. some people take ativan prior to radiation tx to help with anxiety (the mask). radiation tx never bothered me much.
    2. I believe that depends on the type of chemo you're getting. never had chemo nausea myself.
    3. never had enough pain that tylenol and magic mouthwash couldn't handle.
    4. silver sulfadiazine, if burns marks show up.

    with your care, he'll pull through just fine.
  • alligatorpointer
    alligatorpointer Member Posts: 131
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    MuGard
    MuGard can help prevent mouth sores. Here is the link to the website for this product. http://www.mugard.com/
    We were able to receive MuGard quickly by talking to a very pleasant representative named Bonnie at 214-905-5100. The company covered the cost since our insurance would not. The company is working through successful patient outcomes to raise awareness and get doctors to prescribe and insurers to cover... so they want as many patients to have the benefit of MuGard as possible. MuGard is not a 'prn' as needed medication ... rather it is a preventative and should be used before any symptoms occur and continued on a daily basis without stopping throughout the entire treatment period and first weeks after end of treatment. MuGard is most effective if started early ... ideally with the very first radiation treatment. Try to get started on it right away. Several weeks ago my son completed 35-rads/7-cisplatin for SSC of left aryepiglottic fold and used MuGard from beginning of treatments. He did not get any mouth sores. His regimen was to eat then brush & floss then swish with baking soda/salt solution then coat the mouth with MuGard by moving it around all oral surfaces for at least a couple of minutes with each use. Wait at least one hour before eating or drinking again after using MuGard. This should be repeated every 3 to 4 hours while awake. Many doctors do not know about this product since it is quite new. Please help spread the word by seeking your doctor's approval to add this to your treatment. A prescription is required and can be facilitated via forms on the product website submitted through your doctor's office.
  • Pam M
    Pam M Member Posts: 2,196
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    Start Meds NOW
    My nurse advised I start on anti-nausea meds right away (before nausea), and take them on schedule. It was a great idea, in my book.

    What nausea meds will he have? I got Emend, and it was WONDERFUL. I only got it just before, during and after chemo - the rest of the time I took a standard prescription. I also had another drug for "breakthrough" nausea. I almost never took the breakthrough drug.
  • amy_h414
    amy_h414 Member Posts: 98
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    1. My husband did ok until
    1. My husband did ok until closer to the end of radiation. So around week 6 of 7 total.

    2. He got nausea drugs via IV along with the chemo (Emend). Then had pills that he took for the next couple of days (compazine and zofran). Hello constipation! He took Miralax for that.

    3. He never took any pain meds. The big issue for him wasn't pain, it was the damn mucous. He took a bunch of stuff for that but nothing really helped. Mucinex, scopolamine patch, reglan, benadryl... I think that was it, there may have been more. He carried around an empty water bottle to spit into.

    4. For his neck, the rad onc prescribed different creams depending on what was going on with his skin. Xclair in the early days applied after rads and then silver sulfadiazine when it got ugly.

    Everybody is so different and you just don't know how he'll react to treatment until you get there. Best thing you can do is try to stay positive. Call the docs/nurses if you have questions or concerns, that's what they're there for! We found the nurses to be so kind and caring. Hang in there, I know it seems like this scary time will never come to an end, but it'll be over before you know it.
  • alligatorpointer
    alligatorpointer Member Posts: 131
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    Medline Remedy Skin Repair Cream
    Medline Remedy Skin Repair Cream was given to my son by his radiation oncologist and told to use it on his neck every day. It apparently worked very well because my son had only what looked like a mild sunburn and no pain on the skin around his neck where the IMRT radiation was focused. It is available on Amazon and can probably be found in pharmacies or other stores but I have not looked anywhere offline. I bought a supply through Amazon to use after finishing the tube supplied by the doctor. Here is the Amazon link so you can see what the product looks like (the reviewers on Amazon also had high praise for it).
    Link: http://www.amazon.com/Medline-Remedy-Repair-Cream-Olivamine/dp/B008DIZZE2/ref=sr_1_7?s=beauty&ie=UTF8&qid=1349801826&sr=1-7
  • alligatorpointer
    alligatorpointer Member Posts: 131
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    Medline Remedy Skin Repair Cream
    Medline Remedy Skin Repair Cream was given to my son by his radiation oncologist and told to use it on his neck every day. It apparently worked very well because my son had only what looked like a mild sunburn and no pain on the skin around his neck where the IMRT radiation was focused. It is available on Amazon and can probably be found in pharmacies or other stores but I have not looked anywhere offline. I bought a supply through Amazon to use after finishing the tube supplied by the doctor. Here is the Amazon link so you can see what the product looks like (the reviewers on Amazon also had high praise for it).
    Link: http://www.amazon.com/Medline-Remedy-Repair-Cream-Olivamine/dp/B008DIZZE2/ref=sr_1_7?s=beauty&ie=UTF8&qid=1349801826&sr=1-7

    updated link to Medline Remedy Skin Repair Cream
    I edited my link and hopefully the latest one works...it is sold by several suppliers on Amazon and not all of them have reviews under the product description so look at several if you are interested in the reviews. This link has a good description of the product ingredients and formulation:

    http://www.amazon.com/Medline-Remedy-Repair-Cream-Olivamine/dp/B008DIZZE2/ref=sr_1_7?s=beauty&ie=UTF8&qid=1349801826&sr=1-7

    REMEDY SKIN REPAIR CREAM with OLIVAMINE from MEDLINE One 4oz tube RemedyTM Skin Repair Cream contains a higher level of OlivamineTM (two times more than other Remedy products), delivering vital amino acids and antioxidants to the skin. Contains the primary fatty acids found in olive oil - oleic and linoleic acid. These are excellent skin nutrients and lipid replacements. Helps restore and maintain the skin's natural moisture balance. Contains dimethicone to provide a breathable moisture barrier and protect the skin against damage related to dehydration and help block transepidermal water loss (TEWL). Specially formulated for patients who are at-risk for skin breakdown. The nutrients and protection in the Skin Repair Cream are vital to skin recovery as well as maintenance of healthy skin. Works great as a daily therapy to help moisturize and protect delicate skin. Provides relief to skin affected by sunburn, itching or dryness. Ideal as a facial moisturizer and for areas exposed to the sun. Unlike other moisturizers it won't interfere with the antimicrobial properties of CHG (Chlorhexidine Gluconate). It can be used before or after washing with CHG products. Additionally, it does not interfere/degrade latex gloves. OlivamineTM is a blend of antioxidants, amino acids, vitamins and methylsulfonylmethane (MSM). These ingredients are all known to play a vital role in basic cellular construction and protection. OlivamineTM contains antioxidants like hydroxytyrosol, the most potent antioxidant known today (derived from olives). It also contains amino acids like L-proline, L-cysteine and glycine - three of the main building blocks of collagen. These components are also treated with photoacoustic resonance to help minimize the tendency for inflammation, and to ensure they can be rapidly accepted by the skin. Latex free. 4 oz.
  • phrannie51
    phrannie51 Member Posts: 4,716
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    All great suggestions above...
    Just wanted to say that I too hated Aquafor because it was so thick...like thick vasoline....My Radiologist suggested Calendula Cream (you can get it at the health food store)...My neck also did very well thru the 35 rads.

    Also, I too did the Muguard, and it was great during rads. During The last 3 chemo's the mouth sores were too powerful for it to prevent them....but it did work well during radiation.

    I would think they are giving him anit-nausea meds during chemo...so if it were me, when I got home, I'd take my prescriptions for a while. My Onc told me to take them till I was sure I wouldn't be sick. The first two chemos I quit too early, learned by the 3rd chemo to stay on them for at least 5 days. (I was having chemo every 3 weeks tho, so it's a heavier dose.)...

    p
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
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    suggest
    i suggest these tools....


    1. IV fluids weather fighter feels he needs them, get them they will help. if cisplatin is the chemo, i suggest get fluids on day three after chemo. if he feeling bad on day four get some more

    2. sounds like you already have the "positive mental attitude" going, remind friends, family to always be upbeat when around fighter

    3. stay away from touching people esp. children since they carry illness around like flu and colds. stop hand shakes and clean hands alot.

    4. ask questions on csn when you have them.

    5. encourage fighter to accept help, as caregiver accept help... when you let others help that generates positive thoughts.

    6. as caregiver take care of self also.


    john

    oh ya not in the order above but #1 is most important and #2 is right there with #1 :-)
  • luvofmylif
    luvofmylif Member Posts: 344
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    fisrpotpe said:

    suggest
    i suggest these tools....


    1. IV fluids weather fighter feels he needs them, get them they will help. if cisplatin is the chemo, i suggest get fluids on day three after chemo. if he feeling bad on day four get some more

    2. sounds like you already have the "positive mental attitude" going, remind friends, family to always be upbeat when around fighter

    3. stay away from touching people esp. children since they carry illness around like flu and colds. stop hand shakes and clean hands alot.

    4. ask questions on csn when you have them.

    5. encourage fighter to accept help, as caregiver accept help... when you let others help that generates positive thoughts.

    6. as caregiver take care of self also.


    john

    oh ya not in the order above but #1 is most important and #2 is right there with #1 :-)

    Good luck to you during the
    Good luck to you during the treatment phase . We start this friday so I am also interested in helpful advice from the veterans on this site. Wishing you the best
    Joan
  • luvofmylif
    luvofmylif Member Posts: 344
    Options
    fisrpotpe said:

    suggest
    i suggest these tools....


    1. IV fluids weather fighter feels he needs them, get them they will help. if cisplatin is the chemo, i suggest get fluids on day three after chemo. if he feeling bad on day four get some more

    2. sounds like you already have the "positive mental attitude" going, remind friends, family to always be upbeat when around fighter

    3. stay away from touching people esp. children since they carry illness around like flu and colds. stop hand shakes and clean hands alot.

    4. ask questions on csn when you have them.

    5. encourage fighter to accept help, as caregiver accept help... when you let others help that generates positive thoughts.

    6. as caregiver take care of self also.


    john

    oh ya not in the order above but #1 is most important and #2 is right there with #1 :-)

    Good luck to you during the
    Good luck to you during the treatment phase . We start this friday so I am also interested in helpful advice from the veterans on this site. Wishing you the best
    Joan
  • cureitall66
    cureitall66 Member Posts: 913
    Options

    I want to add...
    This morning he felt a little stomach ache (could be nerves), and a little flush.(is that normal?) Seems to be gone right now though...

    Wow!...
    Thanks everyone for your replies. I've been taking notes : )
  • CivilMatt
    CivilMatt Member Posts: 4,723 Member
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    tips of the day
    cureitall66,

    For me taking the nausea medicine prior to chemo, but WATCH OUT it can cause constipation , you will want to be ready for that!!

    Take pain meds if the pain is the main thing on your mind. Don’t tough it out, your time is more valuable and the sleep the pain meds provide is divine. Important, they make liquid pain meds if swallowing becomes a chore.

    For skin sores the nurses kept giving me things (many already mentioned), just ask.

    Unlike blackswampboy I needed one Lorazapam for anxiety prior to “mask time”. It made the trip doable and more interesting. We each have our own (personal) procedure for the rad treatments, but don’t forget your favorite music cd, it beats counting.

    Lots of Kleenex, a place to gag and spit (I had a utility room sink all to myself).

    A recliner and blanket.

    Enjoy your food these next three weeks because after week 3 you may change your mind (and eating habits).

    If you get burns (weeks 6, 7 & 8 for me) the Silver Sulfadiazine Cream is gold.

    My favorite, Magic Mouth Wash, the liquid that saved my life (kidding). Great stuff for the mouth and throat. I went through a six-pack.

    Soda and Salt water for rinsing, gargling and spitting (you may be doing a lot of it)

    There, that will get you started!

    Smooth sailing and an uneventful journey.

    Best,

    Matt
  • Sam999
    Sam999 Member Posts: 319 Member
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    Good luck to you during the
    Good luck to you during the treatment phase . We start this friday so I am also interested in helpful advice from the veterans on this site. Wishing you the best
    Joan

    Most of the good tips are
    Most of the good tips are covered, here is things that helped me a lot:

    I used mugard from the begnning and added caphasol starting 5 th week, i recommed using both starting first day. It really helps in controlling mouth sores.

    I used aloe vera right after radiation. Used to take fresh aloe vera leaf with me and as soon as rads are done woild apply that. After i came home, i would out calundela cream and at night i used to put aquaphor. Never had any burns thruout the treatment with this plan. I used aquaphor on lips. Note that you must follow this strictly every single day, since there is not much healing power, it is hard to heal skin if it starts burns.

    I also used pro biotic pill during the treatment when my food intake was medium to okay. I had to stop when food intake was very low. This really prevents thrush. I never had thrush, one time they thought it was thrush and started my on antibiotic but later it was found not to be thrush.

    I really liked boltshouse farms arabica coffee protein plus smoothie thruout the treatment. It has many other variety as well. It is available in target and whole food here in NJ. I did not have PEG so had to drink all my protien.

    Wish you well with your treatment.

    Sam
  • blackswampboy
    blackswampboy Member Posts: 341
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    Sam999 said:

    Most of the good tips are
    Most of the good tips are covered, here is things that helped me a lot:

    I used mugard from the begnning and added caphasol starting 5 th week, i recommed using both starting first day. It really helps in controlling mouth sores.

    I used aloe vera right after radiation. Used to take fresh aloe vera leaf with me and as soon as rads are done woild apply that. After i came home, i would out calundela cream and at night i used to put aquaphor. Never had any burns thruout the treatment with this plan. I used aquaphor on lips. Note that you must follow this strictly every single day, since there is not much healing power, it is hard to heal skin if it starts burns.

    I also used pro biotic pill during the treatment when my food intake was medium to okay. I had to stop when food intake was very low. This really prevents thrush. I never had thrush, one time they thought it was thrush and started my on antibiotic but later it was found not to be thrush.

    I really liked boltshouse farms arabica coffee protein plus smoothie thruout the treatment. It has many other variety as well. It is available in target and whole food here in NJ. I did not have PEG so had to drink all my protien.

    Wish you well with your treatment.

    Sam

    thrush
    do you mean they started you on anti-fungal?
    antibiotics increase the likelihood of thrush. that's how I got it, from taking amoxicillin.

    eating yogurt (or probiotic) might be worth trying if going on antibiotics.
    cutting down on sugar can also reduce the chance of getting thrush.

    best regards,
    douglas
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    You Have A Plan...
    Sounds like you have a good plan going Cris....

    As for the flush, I would get a chemo flush that lasted for days.

    As for nausea meds, with me I when I had the big doses of chemo, they prescribed EMEND...great stuff, never sick at all.

    During the light single doses of chemo for seven weeks, I only had Zofran or Phenergan to use as needed....I rarely did need it though.

    Most nausea for me was psychological... If I thought about chemo too much, I would feel it, LOL.

    Kind of like when you eat something and get sick..., just the thought of it gets you kind of queasy.

    The Aquaphor was too thick for me I didn't like it. Actually what seemed to work best for me was hot showers, LOL...

    My skin from rads was like a bad sunburn that turned dark and peeled. I would take long warm showers and scrub the skin off lightly.

    But I never had sever burns, so see how it develops...

    Best,
    John