SQUAMOUS CELL CARCINOMA - NECK CANCER - NEWBIE AND NEED SOME CHEMO INSIGHT

rugdoctorgal
rugdoctorgal Member Posts: 5
edited March 2014 in Head and Neck Cancer #1
Help me! I was going to post this on the caregivers board, but thought this might be a better place to get some input.

My husband had his first chemo after being diagnosed with the above, and finally finding the point of origin is where his tonsil used to be. Stage 3, spread to lymph nodes, but not to lungs, etc.

OK, for 4 days after chemo, he was a little tired, but did great. Went into our restaurant for a few hours a day. And then came Sunday. This is Thursday evening, and since Sunday he cannot eat. He has no strength . . . I mean none. The most I have got down him in one day is half of a tiny pancake, half a grilled cheese, and a jello. He is drinking water, gatorade, and Sprite. His lips are starting to crack though.

What, oh what, can I do to help him. How long is this going to last! I thought he would be down a couple of days, then back to normal. How do people work and go through this? He is emotional (and was a linebacker in college).

His WBC was 2.4 on Tuesday when we went in. We just saw the PA, as our doctor was out. I say we, because I am there for every appointment. He had the Neulasta shot the day after chemo. He has a port. His chemo treatment is Taxotere (Docetaxel), Carboplatin (Paraplatin), then they send him home with a fanny pack of Flourouracil (5-FU) for 4 days. He lovingly refers to his 5-FU pack as "chemo to go."

Along with not eating, he has diarrhea, and some vomiting. He is taking Imodium AD.

And so, I'm just looking for someone to help me with a timeline. I keep hearing everyone is different, and I know that. I just thought I might find some fellow caregivers or charters that could give me some info. I appreciate any and all.

His official diagnosis is T2 N2 MO Stage III B. It is G3 - poorly differentiated.

Thanks -

Comments

  • trish07
    trish07 Member Posts: 138
    #2
    Caregiver here...
    So sorry you thought it would be a couple of days then back to normal. Unfortunately chemotherapy side effects are just not that predictable. Most important is to keep him hydrated and instead of offering solids, try small amounts of chicken soup, etc. When my husband is having problems with nausea I have him eat toast [no butter] before he even raises his head off the pillow in the morning.

    If the Dr. gave him anti-nausea meds, give him doses on a regular schedule regardless if he feels nauseated or not. It is much easier to prevent nausea than battle it once it has started. Once you have it under control- continue a couple of days and then gradually ease off. My husband takes Ativan,Zofran and compazine. Also give him the Imodium on a regular schedule easing off to a lessor amount if you think it is under control.

    My husband has no energy after chemo, the slightest amount of physical activity will exhaust him. Just the cancer itself will make a person more tired than usual. Sounds like your husband needs alot of rest. You may have to insist that he takes it easy and does not overdo. This could lead to more nausea if he is not getting the rest that his body needs right now. My husband is always at his worse when he starts a new chemo drug and it seems after a few rounds his body is able to handle it better. My husband is not able to work, although I know that there are many on this board that do.

    There is no set timeline, some have minimal side effects while others have more than their fair share. It is best to plan on "one day at a time". Their will be good days and bad days and you will have to adjust accordingly. My husband gets emotional also. He was very strong and active before, its hard for him to accept that he cannot physically exert himself to the extent that he once did.

    You and your husband take care,
    Trish

    Please visit the Caregivers board also, you will find much needed support from other caregivers.
  • SmithMama2
    SmithMama2 Member Posts: 48
    #3
    chemo insight
    My husband has just finished treatment a week ago. He also had Taxol and Carboplat. Does your husband have a PEG feeding tube? I would strongly suggest that he get one if he hasn't already.

    My husband was very resistant to having this installed, but I don't know how he would have made it without the tube. The surgery recuperation was somewhat painful, and it hurt his pride to have a tube in his abdomen, but now he is SO glad he did. Our docs said the most important keys in making it through treatment were "hydration, nutrition, and oral care." Once patients aren't able to really swallow or when they are feeling too frustrated to eat cardboard tasting food (that is what my husband says everything tastes like), then they start to lose weight. It becomes painful to drink liquids too. And the nausea gets worse. My husband must drink 3 liters of water every day, plus 5-6 cans of liquid meal replacement (like Ensure. I posted a great high cal recipe on this board earlier this week.) There would have been no possible way to get this much liquid into him after the second or third week of treatment without the PEG tube. He continued to swallow pills and water and tea and an occasional bite of soft food, so he hasn't lost his ability to swallow. They say that if you do the swallowing exercises, that really helps too.

    I would also recommend close contact with your husband's doctors. Keep them posted if you are really concerned about any aspect of his symptoms. They might suggest that he come back in to receive extra IV fluids which are supposed to really help when the nausea is bad.

    My husband hasn't worked since this treatment started, and he didn't have disability insurance... He sleeps ALOT (well, except at night when he coughs and cough and coughs trying to get the abundant mucus out of his throat.) He too is constantly exhausted. I am still working full time and caregiving full time, so I am incredibly exhausted too, but I don't have the luxury of naps!

    Is your husband doing radiation too? Mine had both simultaneously. Radiation was easy for the first three weeks, and rougher after that. In total he had 35 radiation treatments and 6 chemo treatments.

    I send you big hugs for you and your husband as you continue through treatment! Your role is vital to his treatment (even though sometimes if feels overlooked by some.) You will find strength you didn't know you had on the road to recovery.

    Blessings,
    Karen
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #4
    Chemo Sides
    Rugdoctorgal,

    I just finished my treatments a few months ago (Jun18th)....

    I had been diagnosed with stage III SCC cancer (HPV derived) in my right tonsil, and a small tumor near my right ear. The tonsils were removed and the treatment was scheduled.

    Similar to your husband, Taxotere, Cisplaten and 5FU three sessions each three weeks long each session. The first Monday was the chemo (Taxotere, Cisplaten and the 5FU from a pump for four days). Then hydration and Neulasta for bone marrow the 2nd Monday, all else was rest.

    After those sessions I had seven weeks with Carboplaten on Mondays, Amofostine injections in my stomach everyday followed with radiation M-F.....(35 exposures)

    For me the radiation was the worst part of it all, especially the last two weeks and the following three weeks after. That was the hardest part cocnerning throat pain when swallowing. I dodn't have a PEG and didn't really need one. Though the period of radiation where I had the most problems I mainly survived off of water and Ensure Plus...needing pain solution just to drink those....

    My neck took a good hit of pealing skin, but nothing much worse than a severe sunburn....nothing not tolerable. If it would itch or ache, warm showers always seemed to sooth it for me....

    Just make sure he stays hydrated as much as possible, and then more.... Make sure to communicate with your doctors the symptoms he is having. My chemo doctor was awesome, she had a drug or solution for anything that I encountered....I had hiccups for awhile, she had a drug, I had heatburn and acid reflux, she had a drug....LOL....she took very good care of me.

    I never physically got sick one time....there were plenty where I was neasuous though. I was very achy for a few days after the first Neulasta shot also, but not the next two shots (one shot for each session the week after the chemo).....

    Like I said and very important is to stay hydrated, I didn't drink enough the second round of chemo and became very tired and sick feeling...all I wanted to do was sleep. The more I slept the worse I felt, the more I wanted to sleep (not drinking any water)....they gave me a few bags of hydration fluids and it was like a light flipped. I immediately felt better...never did that again.

    Eat what he can and when he can, soft mashed potatoes, mac and cheese...if nothing else Ensure Plus. He'll be drinking a lot of that later anyways... It has the most calories, nutrients and vitamins than anything else I found...almost 3000 per drink.

    We are here for you and you can ask anything you want when you need the support.

    God Bless and surround yourself with positive thinking people....

    John
  • ratface
    ratface Member Posts: 1,337 Member
    #5
    Skiffin16 said:

    Chemo Sides
    Rugdoctorgal,

    I just finished my treatments a few months ago (Jun18th)....

    I had been diagnosed with stage III SCC cancer (HPV derived) in my right tonsil, and a small tumor near my right ear. The tonsils were removed and the treatment was scheduled.

    Similar to your husband, Taxotere, Cisplaten and 5FU three sessions each three weeks long each session. The first Monday was the chemo (Taxotere, Cisplaten and the 5FU from a pump for four days). Then hydration and Neulasta for bone marrow the 2nd Monday, all else was rest.

    After those sessions I had seven weeks with Carboplaten on Mondays, Amofostine injections in my stomach everyday followed with radiation M-F.....(35 exposures)

    For me the radiation was the worst part of it all, especially the last two weeks and the following three weeks after. That was the hardest part cocnerning throat pain when swallowing. I dodn't have a PEG and didn't really need one. Though the period of radiation where I had the most problems I mainly survived off of water and Ensure Plus...needing pain solution just to drink those....

    My neck took a good hit of pealing skin, but nothing much worse than a severe sunburn....nothing not tolerable. If it would itch or ache, warm showers always seemed to sooth it for me....

    Just make sure he stays hydrated as much as possible, and then more.... Make sure to communicate with your doctors the symptoms he is having. My chemo doctor was awesome, she had a drug or solution for anything that I encountered....I had hiccups for awhile, she had a drug, I had heatburn and acid reflux, she had a drug....LOL....she took very good care of me.

    I never physically got sick one time....there were plenty where I was neasuous though. I was very achy for a few days after the first Neulasta shot also, but not the next two shots (one shot for each session the week after the chemo).....

    Like I said and very important is to stay hydrated, I didn't drink enough the second round of chemo and became very tired and sick feeling...all I wanted to do was sleep. The more I slept the worse I felt, the more I wanted to sleep (not drinking any water)....they gave me a few bags of hydration fluids and it was like a light flipped. I immediately felt better...never did that again.

    Eat what he can and when he can, soft mashed potatoes, mac and cheese...if nothing else Ensure Plus. He'll be drinking a lot of that later anyways... It has the most calories, nutrients and vitamins than anything else I found...almost 3000 per drink.

    We are here for you and you can ask anything you want when you need the support.

    God Bless and surround yourself with positive thinking people....

    John

    Look at his red blood cell count
    you mention his WBC but energy levels depend on red blood cells for oxogen uptake. The chemo is destroying cancer cells and good cells. It dosen't know the diference. Red blood cells have a period after chemo called Lidar when they are at the lowest. I think around 10-12 days. They start to rebound then but, it takes 21 days for them to become fully mature. That is why some chemo is given in 21 day cycles. Your husband is constantly on chemo and will likely feel this way throughout. It means the chemo is working.

    Also feeling so poorly so quickly into treatment can be a sign of depression. It was with me. Talk to your husband about anti anxiety medication to get him through the initial shock of it all. Shame should be thrown out the window with this disease. Then ask yourself if you as the caregiver may need some medication.

    I'm on week 3 post treatment and still have periods of low energy. Had bloodwork yesterday and both my whites and reds are still down. I sleep about 12 hours a day and still have not returned to work. And yes everything does still taste like cardboard.

    Although I wasn't a linebacker like your husband I'm only fifty and could outwork younger men from sun up to sun down. It is a big shocker emotionally to the big strong man ego to have to slowwwwwww down since most of us never feel the cancer which is why in almost every case it has spread to the lymph nodes. We just don't feel sick. He has to work through some stages and realize he really is seriously sick before he can start to get better.

    Tough road to walk, but at least you can do it as a family. Best of luck and keep posting.
  • rugdoctorgal
    rugdoctorgal Member Posts: 5
    #6
    trish07 said:

    Caregiver here...
    So sorry you thought it would be a couple of days then back to normal. Unfortunately chemotherapy side effects are just not that predictable. Most important is to keep him hydrated and instead of offering solids, try small amounts of chicken soup, etc. When my husband is having problems with nausea I have him eat toast [no butter] before he even raises his head off the pillow in the morning.

    If the Dr. gave him anti-nausea meds, give him doses on a regular schedule regardless if he feels nauseated or not. It is much easier to prevent nausea than battle it once it has started. Once you have it under control- continue a couple of days and then gradually ease off. My husband takes Ativan,Zofran and compazine. Also give him the Imodium on a regular schedule easing off to a lessor amount if you think it is under control.

    My husband has no energy after chemo, the slightest amount of physical activity will exhaust him. Just the cancer itself will make a person more tired than usual. Sounds like your husband needs alot of rest. You may have to insist that he takes it easy and does not overdo. This could lead to more nausea if he is not getting the rest that his body needs right now. My husband is always at his worse when he starts a new chemo drug and it seems after a few rounds his body is able to handle it better. My husband is not able to work, although I know that there are many on this board that do.

    There is no set timeline, some have minimal side effects while others have more than their fair share. It is best to plan on "one day at a time". Their will be good days and bad days and you will have to adjust accordingly. My husband gets emotional also. He was very strong and active before, its hard for him to accept that he cannot physically exert himself to the extent that he once did.

    You and your husband take care,
    Trish

    Please visit the Caregivers board also, you will find much needed support from other caregivers.

    chemo
    Thanks, Trish:

    I think the advice about the meds is what we need to do next time. He wasn't feeling sick so stopped the anti-nausea meds. Imodium AD, he was afraid to take it too much, as the first few days he had major constipation.

    Sherry
  • rugdoctorgal
    rugdoctorgal Member Posts: 5
    #7
    SmithMama2 said:

    chemo insight
    My husband has just finished treatment a week ago. He also had Taxol and Carboplat. Does your husband have a PEG feeding tube? I would strongly suggest that he get one if he hasn't already.

    My husband was very resistant to having this installed, but I don't know how he would have made it without the tube. The surgery recuperation was somewhat painful, and it hurt his pride to have a tube in his abdomen, but now he is SO glad he did. Our docs said the most important keys in making it through treatment were "hydration, nutrition, and oral care." Once patients aren't able to really swallow or when they are feeling too frustrated to eat cardboard tasting food (that is what my husband says everything tastes like), then they start to lose weight. It becomes painful to drink liquids too. And the nausea gets worse. My husband must drink 3 liters of water every day, plus 5-6 cans of liquid meal replacement (like Ensure. I posted a great high cal recipe on this board earlier this week.) There would have been no possible way to get this much liquid into him after the second or third week of treatment without the PEG tube. He continued to swallow pills and water and tea and an occasional bite of soft food, so he hasn't lost his ability to swallow. They say that if you do the swallowing exercises, that really helps too.

    I would also recommend close contact with your husband's doctors. Keep them posted if you are really concerned about any aspect of his symptoms. They might suggest that he come back in to receive extra IV fluids which are supposed to really help when the nausea is bad.

    My husband hasn't worked since this treatment started, and he didn't have disability insurance... He sleeps ALOT (well, except at night when he coughs and cough and coughs trying to get the abundant mucus out of his throat.) He too is constantly exhausted. I am still working full time and caregiving full time, so I am incredibly exhausted too, but I don't have the luxury of naps!

    Is your husband doing radiation too? Mine had both simultaneously. Radiation was easy for the first three weeks, and rougher after that. In total he had 35 radiation treatments and 6 chemo treatments.

    I send you big hugs for you and your husband as you continue through treatment! Your role is vital to his treatment (even though sometimes if feels overlooked by some.) You will find strength you didn't know you had on the road to recovery.

    Blessings,
    Karen

    chemo
    Karen:

    Thanks for you note, so much.

    He has a port and it was my understanding that any nutrients he will need will be given through that. I may not have understood it correctly, and will definitely ask when we go back on Tuesday.

    The three things your doctor said were vital, hubby has done one. He has tried to keep himself hydrated. He has other teeth issues (implants and bridges) and only has 4 of his own teeth.

    He doesn't like the taste of Ensure, but has agreed to get one a day down for me!

    He is having radiation after chemo is complete, then a month or so after. He hasn't had surgery, that is #3 in his program. Chemo, then radiation, then surgery (if needed).

    I never want to impose on doctors, but, I have a full list of questions for when we go in on Tuesday!

    Thanks again for your support. We're hanging in there.

    Sherry
  • rugdoctorgal
    rugdoctorgal Member Posts: 5
    #8
    Skiffin16 said:

    Chemo Sides
    Rugdoctorgal,

    I just finished my treatments a few months ago (Jun18th)....

    I had been diagnosed with stage III SCC cancer (HPV derived) in my right tonsil, and a small tumor near my right ear. The tonsils were removed and the treatment was scheduled.

    Similar to your husband, Taxotere, Cisplaten and 5FU three sessions each three weeks long each session. The first Monday was the chemo (Taxotere, Cisplaten and the 5FU from a pump for four days). Then hydration and Neulasta for bone marrow the 2nd Monday, all else was rest.

    After those sessions I had seven weeks with Carboplaten on Mondays, Amofostine injections in my stomach everyday followed with radiation M-F.....(35 exposures)

    For me the radiation was the worst part of it all, especially the last two weeks and the following three weeks after. That was the hardest part cocnerning throat pain when swallowing. I dodn't have a PEG and didn't really need one. Though the period of radiation where I had the most problems I mainly survived off of water and Ensure Plus...needing pain solution just to drink those....

    My neck took a good hit of pealing skin, but nothing much worse than a severe sunburn....nothing not tolerable. If it would itch or ache, warm showers always seemed to sooth it for me....

    Just make sure he stays hydrated as much as possible, and then more.... Make sure to communicate with your doctors the symptoms he is having. My chemo doctor was awesome, she had a drug or solution for anything that I encountered....I had hiccups for awhile, she had a drug, I had heatburn and acid reflux, she had a drug....LOL....she took very good care of me.

    I never physically got sick one time....there were plenty where I was neasuous though. I was very achy for a few days after the first Neulasta shot also, but not the next two shots (one shot for each session the week after the chemo).....

    Like I said and very important is to stay hydrated, I didn't drink enough the second round of chemo and became very tired and sick feeling...all I wanted to do was sleep. The more I slept the worse I felt, the more I wanted to sleep (not drinking any water)....they gave me a few bags of hydration fluids and it was like a light flipped. I immediately felt better...never did that again.

    Eat what he can and when he can, soft mashed potatoes, mac and cheese...if nothing else Ensure Plus. He'll be drinking a lot of that later anyways... It has the most calories, nutrients and vitamins than anything else I found...almost 3000 per drink.

    We are here for you and you can ask anything you want when you need the support.

    God Bless and surround yourself with positive thinking people....

    John

    chemo
    John:

    OMG - Your case sounds exactly like hubby's, but, he had his tonsils out when he was a child. He didn't have that surgery. All other aspects seem identical (except that he has had 5 days of being very very sick.)

    But, last night I was at my wit's end and was going to take him to the doctor today. He woke up feeling a bit better. Ate a few bites of breakfast and the same at lunch. Everything stayed down and he said he actually feels better today. Yeah!!! I'm so thankful.

    He is doing his best to keep hydrated. I don't think I'll share the fact that the radiation was the hardest of all for you. I just want him to get through this one, so he's somewhat "normal" for the next round.

    He's having 7 weeks of radiation, but nothing has been said yet about the shots.

    Did you have a port in your chest? I saw many patients the day he was having chemo, but most were getting it through an iv in their arms. He and two others were having it through a port. Just wondering.

    Again, thanks for the reply. I also have many friends and family members praying, praying hard for him. We're gonna do this thing.

    Sherry
  • rugdoctorgal
    rugdoctorgal Member Posts: 5
    #9
    ratface said:

    Look at his red blood cell count
    you mention his WBC but energy levels depend on red blood cells for oxogen uptake. The chemo is destroying cancer cells and good cells. It dosen't know the diference. Red blood cells have a period after chemo called Lidar when they are at the lowest. I think around 10-12 days. They start to rebound then but, it takes 21 days for them to become fully mature. That is why some chemo is given in 21 day cycles. Your husband is constantly on chemo and will likely feel this way throughout. It means the chemo is working.

    Also feeling so poorly so quickly into treatment can be a sign of depression. It was with me. Talk to your husband about anti anxiety medication to get him through the initial shock of it all. Shame should be thrown out the window with this disease. Then ask yourself if you as the caregiver may need some medication.

    I'm on week 3 post treatment and still have periods of low energy. Had bloodwork yesterday and both my whites and reds are still down. I sleep about 12 hours a day and still have not returned to work. And yes everything does still taste like cardboard.

    Although I wasn't a linebacker like your husband I'm only fifty and could outwork younger men from sun up to sun down. It is a big shocker emotionally to the big strong man ego to have to slowwwwwww down since most of us never feel the cancer which is why in almost every case it has spread to the lymph nodes. We just don't feel sick. He has to work through some stages and realize he really is seriously sick before he can start to get better.

    Tough road to walk, but at least you can do it as a family. Best of luck and keep posting.

    CHEMO
    I have a note to ask about antidepressants (I've been on them for years) and to ask about the red blood count, also. Didn't realize that was important.

    I think everyone who has and deals with cancer are the strongest people I know!

    Sherry
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #10
    rugdoctorgal said:

    chemo
    John:

    OMG - Your case sounds exactly like hubby's, but, he had his tonsils out when he was a child. He didn't have that surgery. All other aspects seem identical (except that he has had 5 days of being very very sick.)

    But, last night I was at my wit's end and was going to take him to the doctor today. He woke up feeling a bit better. Ate a few bites of breakfast and the same at lunch. Everything stayed down and he said he actually feels better today. Yeah!!! I'm so thankful.

    He is doing his best to keep hydrated. I don't think I'll share the fact that the radiation was the hardest of all for you. I just want him to get through this one, so he's somewhat "normal" for the next round.

    He's having 7 weeks of radiation, but nothing has been said yet about the shots.

    Did you have a port in your chest? I saw many patients the day he was having chemo, but most were getting it through an iv in their arms. He and two others were having it through a port. Just wondering.

    Again, thanks for the reply. I also have many friends and family members praying, praying hard for him. We're gonna do this thing.

    Sherry

    Glad He's Feeling Better
    That was always my joke about having cancer..."Other than having cancer I'm in perfect health...LOL"...

    I'm 55 and I'm rarey ever sick, until the cancer....it came on as a minor sore throat around late September or October last year. I remember I was waiting for it to pass so I could get a flu shot....big surprise when I eventually went to an ENT after my general MD couldn't treat it with antibiotics....

    Anyways, yes I have a port, they plan on leaving it in for a year,. I'm not sure if that's a year from initially putting it in or post radiation..... For simple blood work and draws I prefer the arm and vein. Using the port is kind of painful for a few minutes when they first push the big fat pin in for the port. But it goes away fairly fast...just the guy that draws blood through my arm is very good, I don't feel a thing.

    I do still need to go in every 6 - 8 weeks to have the port flushed though. So as not get any infection I guess, and keep it clear.

    Your husband will figure out eventually that the radiation or concurrent radiation and chemo is the worse part and unfortunately, the one that will cause the most significant long term damage...taste and salivary function mainly.....and loss of hair, but most of my hair has came back so far.....still a little on my neck and back that is lagging...

    The Amifostine shots were given each day just before the radiation with me... It is supposed to help with the thick mucousitus, and in retaining some salivary function...I dunno,I didn't have problems really with thick mucous, but don't have much saliva....

    All I can say is stay hydrated...it's what made me the most sick during the entire process...not getting in enough fluids.....

    They told me that if I was trying (when I used that term once), that I wasn't getting enough....LOL.

    God Bless and Hang in There.....each day is closer to finsihing....

    On another note about the radiation...most people get really depressed because they think they are finally done and will start getting or feeling better right away....Unfortuantely, it takes several weeks after the radiation before you start feeling good again...Especially the first three weeks after.....Just a little insight for you.

    Take Care and stay in touch,
    John
  • chinaberry25
    chinaberry25 Member Posts: 8
    #11
    My husband finished his treatment 6 months ago. No surgery. Still not back to eating. Cancer can still affect you 10 years later. A friend said in takes a year to get over to where you gain all your weight and feel well. My husband still does not eat w/o a peg tube. Gained 20 pounds that way.

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