5FU and cisplatin what to expect & my updatek

Cathelen72
Cathelen72 Member Posts: 33 Member
in Head and Neck Cancer #1
Hi everyone! Well I am now 16 days post radiation and I feel like I actually doing ok. I can taste some savory foods like tomatoes, cinnamon, oats and coffee. Decided not to drink too much coffee because it upsets my stomach. I figure I would try a little food everyday. I can only get down a few bites for now. The mucous isn't so bad right now but there are days it makes me gag. I do not have much saliva but now am part of an acupuncture study so hoping it helps with my saliva production. I am battling severe congestion especially at night. Did anyone with NPC struggle with nasal congestion?
Now for my question. Everyday I start to feel better but am anxious about my next 3 rounds of chemo with 5fu and cisplatin. Is this therapy going to set back my progress? What did you experience during this treatment? What advice can you offer to help get through it?
Thank you all so much for your support and guidance.

Warm and sunny thoughts,

Catherine

Comments

  • jim and i
    jim and i Member Posts: 1,788 Member
    #2
    Cisplatin
    Catherine,

    Cisplatin is some mean stuff. Take your naeusea meds as directed, even if you feel OK. Hydrate, hydrate, hydrate, hydrate, can't say it enough. My husband was hospitalized twice for dehydration. You do not say if you have a PEG. If not force that water down even if you do not want it. If you have the PEG it is easier because you can put fluids through your PEG. Coconut water is highly recommended for hydration though pricey. Some oncologist routinely have the patient get interveneous hydration a day or two after treatmment.

    You look young so maybe you will sail through the treatment. My husband is in his 70s and had lost over 40 lbs before treatment started which weakened him.

    Praying you have minimal to no side effects.

    Blessings,
    Debbie
  • Cathelen72
    Cathelen72 Member Posts: 33 Member
    #3
    jim and i said:

    Cisplatin
    Catherine,

    Cisplatin is some mean stuff. Take your naeusea meds as directed, even if you feel OK. Hydrate, hydrate, hydrate, hydrate, can't say it enough. My husband was hospitalized twice for dehydration. You do not say if you have a PEG. If not force that water down even if you do not want it. If you have the PEG it is easier because you can put fluids through your PEG. Coconut water is highly recommended for hydration though pricey. Some oncologist routinely have the patient get interveneous hydration a day or two after treatmment.

    You look young so maybe you will sail through the treatment. My husband is in his 70s and had lost over 40 lbs before treatment started which weakened him.

    Praying you have minimal to no side effects.

    Blessings,
    Debbie

    Hi Debbie,
    I do have a peg
    Hi Debbie,

    I do have a peg tube which has been a savior but I still have managed to lose 30 lbs, however I was a little on the heavy side so even losing 30 still puts me in a healthy weight. I do miss food though. I am 39 and handled the high dose cisplatin with radiation pretty well until my 3rd cycle which put me in the hospital for 3 days so I nervous about the chemo again. I know not having radiation on top of it should make it easier but I still worry.

    Thank you for your advice!
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #4
    Cisplatin & 5FU
    Hi Catherine,

    I had Nine weeks of chemo up fron before concurrent seven weeks of carboplatin and 35 daily rads (no PEG though).

    The nine weeks upfront was in three week cycles...Cisplatin, Taxotere and 5FU. I did take Emend for the first three days...great stuff for nausea, then Zofran the additional days if needed.

    Other than hydrating a lot....I didn't have any complications from the chemo cocktail. It was the period I lost my hair for a few weeks and the taste would be lost for the first week, slowly back the second and by the third week I was back to normal again.

    The 5FU was given in a pump through the power port I had inserted into my chest. The pump wass worn in a fanny pack.... It was put on Monday after the Cisplatin and Taxotere, worn until it ran out Thursday night.

    Friday I'd come in for hydration, the pump removed, and back that Monday for Neulasta.

    As you are aware, we are all different, but I dodn't have any adverse side effects from the Cisplatin, Taxotere or 5FU... The concurrent chemo/radiation was the harder part, and that was still just the radiation, not the chemo.

    Best,
    John
  • Hondo
    Hondo Member Posts: 6,636 Member
    #5
    Hi Catherine

    With my NPC I did not have too much congestion but did have to sleep sitting up some night as I could no breathe and my mouth was so dry it was like a desert. Try asking the dr if you can use any of the over counter meds or anything to help with the congestion.

    Sorry but they just don’t make an easy way with chemo, I know it’s hard just keep focus on the finish line ahead of you as you are almost there. I was lucky I think and did not have the 5fu cisplatin so don’t know too much about it.

    Wishing you the best
    Hondo
  • NKH
    NKH Member Posts: 1
    #6
    Nasal Congestion
    Hi Catherine, I was diagnosed with NPC 5 years ago when I was then 46 years old. I had severe nasal congestion ever since and lately I lost my hearing entirely. I am deaf.
    I started to go for acupuncture recently and hope for cure to my nasal congestion. Western medicine after my radiation therapy were all symptomatic - based and for 5 years there were no improvement to my nasal, eye and throat dryness problem.
    I was told that in China, NPC patients were given herbal and acupuncture treatment together with radiation / chemotherapy. Those patients after treatment had minimal side effects either dry eyes or throat.. No hearing loss ot nasal congestion.
    My hearing loss was associated with nasal congestion whereby certain fluids got into the inner ear and I had vertigo, nausea and other symptoms similar to Miniere's Disease.
    There is no hope for cure from modern medicine and I all out for TCM and acupuncture.
    Wish you well.
    Ng Kok Hong
  • Hondo
    Hondo Member Posts: 6,636 Member
    #7
    NKH said:

    Nasal Congestion
    Hi Catherine, I was diagnosed with NPC 5 years ago when I was then 46 years old. I had severe nasal congestion ever since and lately I lost my hearing entirely. I am deaf.
    I started to go for acupuncture recently and hope for cure to my nasal congestion. Western medicine after my radiation therapy were all symptomatic - based and for 5 years there were no improvement to my nasal, eye and throat dryness problem.
    I was told that in China, NPC patients were given herbal and acupuncture treatment together with radiation / chemotherapy. Those patients after treatment had minimal side effects either dry eyes or throat.. No hearing loss ot nasal congestion.
    My hearing loss was associated with nasal congestion whereby certain fluids got into the inner ear and I had vertigo, nausea and other symptoms similar to Miniere's Disease.
    There is no hope for cure from modern medicine and I all out for TCM and acupuncture.
    Wish you well.
    Ng Kok Hong

    Hi Ng Kok Hong

    There are a lot of here also with NPC, glad to see you made the five year mark. I too have the hearing & sinus problems I guess it just goes with the NPC cancer. I just started acupuncture a week ago but had to stop because of sinus infection was making the pain worse. I do plan to go back as soon as I can get a doctor in the USA to see that there is still an infection in my sinus and prescribe something to help clear it up.

    PS: Welcome to the family here on CSN and hope you plan on staying my friend
    Hondo
  • NJR
    NJR Member Posts: 82
    #8
    Cisplatin
    Hi Cathlene,
    I have found that most people will tell you that Radiation is worse than the ChemoTherapy. I don't doubt their word, but not one person who ever told me that was prescribed Cisplatin. Cisplatain became in a few short days the only thing in my life that I was literally and absolutely terrified of. To make it worse, each treatment took longer to recover from even though the Doc was adjusting my dosage (which I later found to be almost double most other case I have heard of). Each time landed me in the hospital, the first in hospice where unknown to me I was not expected to leave. Cisplatain is an all day treatement as they are giving you other drugs to help you survive it along with hydration in the morning. In the after noon there is another course of drugs with additional bags of saline after the Cisplatin is administered. It is hard to conceive that a dose of 75 to 165 mg of any drug can cause the array of miserable side effects that this stuff does but the worst part of it I was fine for 5 days after the treatment. The following Sunday in each case my world came crashing down and by Monday I was literally wishing for death even though after the first one I knew I would be okay If I stuck out the next 4 or 5 days. The key for me was virtually unlimited pain killers with morphine every hour and Fentanyl patches at 100 mcg/h (10 mg if memory serves) Even at that the pain and nausea were still present, just not as over whelming.
    Now that I have probably scared you half to death please keep in mind not all people are affected this severely, and even I have to admit that within a week of my first treatment my largest but secondary tumor had shrunk to 50% of it's original size so the Doctor's goal was met. They hit the cancer hard and even though just barely, they avoided killing me. Fortunately for the both of us I had been admitted to the controlled environment where I didn't have the ability to control the outcome because after the first and second treatments I most certainly would have if it were possible.
    For me, I will never, ever do Cisplatin again no matter the cost or probable outcome, but looking back I am glad I did because it gave me the time to do the things that needed to be done and say the things that needed to be said. That I am grateful for, but that is where Cisplatin and I part company forever.

    Nick
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #9
    NJR said:

    Cisplatin
    Hi Cathlene,
    I have found that most people will tell you that Radiation is worse than the ChemoTherapy. I don't doubt their word, but not one person who ever told me that was prescribed Cisplatin. Cisplatain became in a few short days the only thing in my life that I was literally and absolutely terrified of. To make it worse, each treatment took longer to recover from even though the Doc was adjusting my dosage (which I later found to be almost double most other case I have heard of). Each time landed me in the hospital, the first in hospice where unknown to me I was not expected to leave. Cisplatain is an all day treatement as they are giving you other drugs to help you survive it along with hydration in the morning. In the after noon there is another course of drugs with additional bags of saline after the Cisplatin is administered. It is hard to conceive that a dose of 75 to 165 mg of any drug can cause the array of miserable side effects that this stuff does but the worst part of it I was fine for 5 days after the treatment. The following Sunday in each case my world came crashing down and by Monday I was literally wishing for death even though after the first one I knew I would be okay If I stuck out the next 4 or 5 days. The key for me was virtually unlimited pain killers with morphine every hour and Fentanyl patches at 100 mcg/h (10 mg if memory serves) Even at that the pain and nausea were still present, just not as over whelming.
    Now that I have probably scared you half to death please keep in mind not all people are affected this severely, and even I have to admit that within a week of my first treatment my largest but secondary tumor had shrunk to 50% of it's original size so the Doctor's goal was met. They hit the cancer hard and even though just barely, they avoided killing me. Fortunately for the both of us I had been admitted to the controlled environment where I didn't have the ability to control the outcome because after the first and second treatments I most certainly would have if it were possible.
    For me, I will never, ever do Cisplatin again no matter the cost or probable outcome, but looking back I am glad I did because it gave me the time to do the things that needed to be done and say the things that needed to be said. That I am grateful for, but that is where Cisplatin and I part company forever.

    Nick

    Always a First
    Hi Nick, guess I'll be the first to tell you, that for me radiation was the worst and I went through chemo with Cisplatin, Taxotere, 5FU and Carboplatin.

    Sorry you had such a rough go of it..but again, I believe it's a case of what we always say,

    Everyone is different....

    Best,
    John
  • ratface
    ratface Member Posts: 1,337 Member
    #10
    Skiffin16 said:

    Always a First
    Hi Nick, guess I'll be the first to tell you, that for me radiation was the worst and I went through chemo with Cisplatin, Taxotere, 5FU and Carboplatin.

    Sorry you had such a rough go of it..but again, I believe it's a case of what we always say,

    Everyone is different....

    Best,
    John

    Take a short walk
    Every day no matter how short even if it's just to the mailbox. It will bring great benefits and improve your mental outlook. One foot in front of the other and you've made it back home!
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #11
    Skiffin16 said:

    Always a First
    Hi Nick, guess I'll be the first to tell you, that for me radiation was the worst and I went through chemo with Cisplatin, Taxotere, 5FU and Carboplatin.

    Sorry you had such a rough go of it..but again, I believe it's a case of what we always say,

    Everyone is different....

    Best,
    John

    Forgot to Add
    A few things...

    I know that I had it amazingly mild compared to some. But at the same time there are others here that had it much better than the worst also.

    With the treatment I mentioned above, sixteen weeks of combinations of tonsils removed, four different types of chemo, 35 days of radiation and having Amifostine injected into my stomach every one of those days.

    With meds like Emend, plenty of water, exercise and a positive mental attitude...for me (as I can only speak for myself).

    I never got sick, nuseaous yes, but never sick, never hospitalized, no skipped or delayed treatments or sessions, and at present no long term drugs or prescriptions. I have no tennitus, no neuropathy, I have regained nearly 95% of both my taste and saliva. My thyroid did take a hit and is going south, but that's about the only thing I can think of. Actually to my surprise at over 2 1/2 years out, I just had a dental exam and no cavities....

    Myself as others are no stronger than the next, it's purely genetics and luck of the draw and of course, the power of God..

    The only reason I bring this up is to throw out there hope and some positive feedback for others about to go through the same scenarios and treatment.

    Again, we are all different, nobody can predict what the outcome will be or the reactions your body will have.

    JG
  • NJR
    NJR Member Posts: 82
    #12
    Skiffin16 said:

    Always a First
    Hi Nick, guess I'll be the first to tell you, that for me radiation was the worst and I went through chemo with Cisplatin, Taxotere, 5FU and Carboplatin.

    Sorry you had such a rough go of it..but again, I believe it's a case of what we always say,

    Everyone is different....

    Best,
    John

    Cisplatin
    Ha Skiffin I knew you all were out there because Cisplatin never could have remained on the market for 40 years if not and they haven't changed a thing since there is no money for research for most of our types of head and neck cancers. My regime was Cisplatin, 5FU and another drug that started with a D. (I'd have to look it up), this in conjunction with the radiation. The radiation was never anything that gave me any problems at all (that I could tell) until the very last two sessions. It was almost if they calculated exactly what I could take. There were however two times it had to be postponed because of the havoc the chemo was doing. Fortunately for me, ER was the floor below.

    Nick
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #13
    NJR said:

    Cisplatin
    Ha Skiffin I knew you all were out there because Cisplatin never could have remained on the market for 40 years if not and they haven't changed a thing since there is no money for research for most of our types of head and neck cancers. My regime was Cisplatin, 5FU and another drug that started with a D. (I'd have to look it up), this in conjunction with the radiation. The radiation was never anything that gave me any problems at all (that I could tell) until the very last two sessions. It was almost if they calculated exactly what I could take. There were however two times it had to be postponed because of the havoc the chemo was doing. Fortunately for me, ER was the floor below.

    Nick

    Docetaxel
    Docetaxel could be the chemo drug you are thinking of...it's the generic name for Taxotere.

    Some of the most common for H&N seem to be Cisplatin, Carboplatin, Taxotere, 5FU, Erbitux and Taxol.

    I'm sure there are others here that had something different, just can't think of them at the moment.

    Like mentioned above, I had similar to you, Cisplatin, Taxotere and 5FU for nine weeks (three sessions each), then seven weeks of concurrent weekly Carboplatin and daily rads.

    You did pretty well it sounds on rads. Mine was tolerable, but definitely a rough seven week diet.

    Best,
    John

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