The Plan for me.....

phrannie51
phrannie51 Member Posts: 4,716
edited April 2012 in Head and Neck Cancer #1
I saw the Oncologist today...my appointment was at 9:30, and he was with me unitl almost 1:00...longest Dr. appointment I've ever had in my life....and the most thorough exam I've ever had in my life. I like him, too!!!

The plan will be as follows...35 rads.....3 doeses of Cisplatin, three weeks apart...then another 3 doses of Cisplatin "plus another drug" that he said we'll discuss when that time comes. We will try the Amifostine as not only can it preserve salivary glands, but it mitigates damage to the kidneys. Also, Filgrastim to stimulate white blood cells if my count goes too low.

He's already called the pharmacy for me to pick up Zofran, Emend, Compazine, and Ativan for nausea...he has a regiment for the nausea, and he said it's absolutely imperative that I follow the regime for the 3 days following the infusion days.

He set me up for a Mammogram on Monday...and a MRI on Weds of my cranium and cervical spine...I think just to make sure the tumor hasn't gone into the bone of my skull, because I've had some pain in my shoulder, and slight numbness of my jaw (just a small place).

He will be setting me up for tube placement and getting a port (hopefully at the same time) this upcoming week...they couldn't do that today, because it's Good Friday, and some places were closed in the afternoon. He said even if I never use the tube, he wants it there, because I'm a skinny minnie. He set me up with a speech therapist as she also does the swallowing therapy (ths therapist ended up being a great friend to mom when she had her laryngetomy, so it's comforting to have a family tie, there).

I went to bed comforted knowing I have a team for this fight...and woke up scared to death...that faded, and now am back to wanting to get the show on the road.

Have I told you guys this week how GLAD I am you're here? I'm telling you now, then. :P

p
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Comments

  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    Schedule
    So, you're going to get just the Chemo for the first 9-11 weeks, then start with the 35 rads a couple months after the first Chemo?

    Likely the "other" drug is what we all get- 5FU/Flouroracil. That is typically why the Port is installed, as it is delivered via pump. Usually, though, that is also given during the first Chemo at the same time as the Cisplatin drips at the Oncology center. So, first you're only getting Cisplatin drips for the first 9 weeks?

    John, and others, know more about this regiment than I do-AND I ask them for input, for you. And, for clarification from you, P-51, on the actual C&R regiment and schedule. Very important. We are not Drs, but the collective lot of us do know a lot. My understanding is that the regiment goes:

    1) Flushing and 2 or 3 Cisplatin drips to start, concurrent with 5FU delivered by pump for 96-hours, three times over 9 weeks

    That done, then

    2) 35 rad sessions with a secondary Chemo, typically Erbitux

    That done, then

    3) Perhaps another round of drips with another secondary Chemo

    Look forward to your response, Phrannie

    kcass
  • phrannie51
    phrannie51 Member Posts: 4,716
    Kent Cass said:

    Schedule
    So, you're going to get just the Chemo for the first 9-11 weeks, then start with the 35 rads a couple months after the first Chemo?

    Likely the "other" drug is what we all get- 5FU/Flouroracil. That is typically why the Port is installed, as it is delivered via pump. Usually, though, that is also given during the first Chemo at the same time as the Cisplatin drips at the Oncology center. So, first you're only getting Cisplatin drips for the first 9 weeks?

    John, and others, know more about this regiment than I do-AND I ask them for input, for you. And, for clarification from you, P-51, on the actual C&R regiment and schedule. Very important. We are not Drs, but the collective lot of us do know a lot. My understanding is that the regiment goes:

    1) Flushing and 2 or 3 Cisplatin drips to start, concurrent with 5FU delivered by pump for 96-hours, three times over 9 weeks

    That done, then

    2) 35 rad sessions with a secondary Chemo, typically Erbitux

    That done, then

    3) Perhaps another round of drips with another secondary Chemo

    Look forward to your response, Phrannie

    kcass

    My understanding was...
    I'll be doing the concurrent Rads and Cisplatin during the 35 rads, 9 weeks total of Cispatin...THEN 9 more weeks of Cisplatin and the mystery drug (mystery, only because he hasn't told me what it is). I assumed from reading on here, that it would be the 5FU that he's talking about for the mix with the last 3 weeks of Cisplatin.

    He made it really clear that it's ok for Rads to begin first, but not chem then rads...even one treatment.

    Maybe I should press him a little on the "mystery" stuff? What exactly is the name of it, etc?

    p
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member

    My understanding was...
    I'll be doing the concurrent Rads and Cisplatin during the 35 rads, 9 weeks total of Cispatin...THEN 9 more weeks of Cisplatin and the mystery drug (mystery, only because he hasn't told me what it is). I assumed from reading on here, that it would be the 5FU that he's talking about for the mix with the last 3 weeks of Cisplatin.

    He made it really clear that it's ok for Rads to begin first, but not chem then rads...even one treatment.

    Maybe I should press him a little on the "mystery" stuff? What exactly is the name of it, etc?

    p

    Then-
    They are starting you with Cisplatin drips, 5FU and rads, all at the same time?

    I ask, Phrannie, because it's typical to get Cisplatin drips on a Monday, then wait three weeks for the second drip, and then another three weeks for the last of the drips- that's the 9 weeks. Also heard of Cisplatin after the initial regiment, but there are also other chemo meds that can be used. Taxatore is one, I think. Does kinda surprise me you won't be getting 5FU from the start with the Cisplatin, but it might be a new and better way. Sure do hope so.

    kcass
  • phrannie51
    phrannie51 Member Posts: 4,716
    Kent Cass said:

    Then-
    They are starting you with Cisplatin drips, 5FU and rads, all at the same time?

    I ask, Phrannie, because it's typical to get Cisplatin drips on a Monday, then wait three weeks for the second drip, and then another three weeks for the last of the drips- that's the 9 weeks. Also heard of Cisplatin after the initial regiment, but there are also other chemo meds that can be used. Taxatore is one, I think. Does kinda surprise me you won't be getting 5FU from the start with the Cisplatin, but it might be a new and better way. Sure do hope so.

    kcass

    Sorry Kent...I reread my first post
    and it isn't very clear what the treatment is going to be.

    He is starting me on a Cisplatin drip AND Rads on Monday the 16th. I'll have a total of 3 Cisplatin drips over the course of 9 weeks concurrent with 35 rad treatments. Then another 3 Cisplatin drips along with another drug, so far unnamed...every 3 weeks for a total...in the end...of 6 chemo treatments over a course of 18 weeks.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    My Regime'
    As Kent said, mine (and a few others here) was similar, but a little different.

    Nine weeks (three week cycles) of Cisplatin, Taxotere on the 1st, 4th and 7th Monday. After that on the same day, they would hook up the 5FU pump and I'd wear the until Friday morning (it would empty late Thursday night and I'd clamp it off and turn it off.

    Friday I'd go in, they'd give me a bag of fluids for hydration, flush the port and send me on my way.

    I would take Emend the first day of each of those Mondays, and the next two days after.

    I would get Neulasta injections each Monday of the 2nd, 5th, and 8th weeks. That was for helping the blood count regeneration. As a side note, about a day or so after each of those injections, especially the first. My bones would get achy, like the flu for a day or so.

    All was ran through the port also mentioned by Kent and through a pump. The pump speeds up and simplifies the process. Usually the very first day is very long, as the are seeing how you tolerate the drugs and various other things they pump into you. The also see how fast they can pump into you and tolerate it (to speed up the process).

    Note: Take a lunch, it's a long day and the pro's (other patients), will have brought theirs and be eating in front of you while you are staring...enjoy your taste while it lasts.

    Also, sit near the restroom's if you have a chance...once they start running the drugs, fluids, lasix and other through you, you'll start flowing... (I was nick named "The Pee King"), if that gives you a hint.

    Sooooo, after that nine weeks, I started my concurrent, which was as follows;

    Seven weeks of chemo and 35 daily rads... I would get Carboplatin every Monday of the seven weeks. Then I'd get the Amifostine Injection (BTW it is most effective if given within 15 - 30 minutes just prior to radiation). I'd then go down to the radiation session, get masked up and have the rads.

    The rest of the week, Tuesday - Friday was juct the radiaiton sessions.

    That is why I refer to this seven weeks of treatment as GroundHog Days, like the movie...same thing, day after day...

    It was mentioned to me that the order just happened to be what was best inustry wide at the time. That just could have concurrent first, then the nine weeks of just chemo, or my sequence.

    The concurrent as Kent mentioned has the benifit of the chemo (usually it seems either Carboplatin or Erbitux) to enhance and make the radiation more effective...or so I'm told.

    The Zohran, and others are just used for any days that you might feel a little sick... I was lucky, I never got sick other than feeling bad one day when someone kept talking about it...LOL.

    Good news on the PEG, at your weight, it's a great idea having it in place already.

    As for the Amifostine, some start having reactions eventually towar the end of treatment...that being said only to make you aware, not to cause any anxiety.

    I 100% recommend it...as a side benifit, Amifostine also supposedly helps to minimize the thick ropey phlegm you here a lot of people on here talk about... I never had that, and I did get all taste and nearly all salive back, so I can only presume that the Amifostine aided those. Most do seem to get their taste and saliva back regardless of Amifostine though.

    BTW, my reaction to the Amifostine started around day 32, and was just high fevers...nothing more for me...just didn't want to leave you hanging on my side effect. We figured it out in a day or so, stopped the injections and finished treatment.

    Oh, while I think of it, my injections were in my tummy each day before rads....left a small itchy spot, so they'd rotate the injection site around each day.

    Any other questions, please feel free....

    Anyways, more info than you ever wanted to know....

    Best,
    John
  • phrannie51
    phrannie51 Member Posts: 4,716
    Skiffin16 said:

    My Regime'
    As Kent said, mine (and a few others here) was similar, but a little different.

    Nine weeks (three week cycles) of Cisplatin, Taxotere on the 1st, 4th and 7th Monday. After that on the same day, they would hook up the 5FU pump and I'd wear the until Friday morning (it would empty late Thursday night and I'd clamp it off and turn it off.

    Friday I'd go in, they'd give me a bag of fluids for hydration, flush the port and send me on my way.

    I would take Emend the first day of each of those Mondays, and the next two days after.

    I would get Neulasta injections each Monday of the 2nd, 5th, and 8th weeks. That was for helping the blood count regeneration. As a side note, about a day or so after each of those injections, especially the first. My bones would get achy, like the flu for a day or so.

    All was ran through the port also mentioned by Kent and through a pump. The pump speeds up and simplifies the process. Usually the very first day is very long, as the are seeing how you tolerate the drugs and various other things they pump into you. The also see how fast they can pump into you and tolerate it (to speed up the process).

    Note: Take a lunch, it's a long day and the pro's (other patients), will have brought theirs and be eating in front of you while you are staring...enjoy your taste while it lasts.

    Also, sit near the restroom's if you have a chance...once they start running the drugs, fluids, lasix and other through you, you'll start flowing... (I was nick named "The Pee King"), if that gives you a hint.

    Sooooo, after that nine weeks, I started my concurrent, which was as follows;

    Seven weeks of chemo and 35 daily rads... I would get Carboplatin every Monday of the seven weeks. Then I'd get the Amifostine Injection (BTW it is most effective if given within 15 - 30 minutes just prior to radiation). I'd then go down to the radiation session, get masked up and have the rads.

    The rest of the week, Tuesday - Friday was juct the radiaiton sessions.

    That is why I refer to this seven weeks of treatment as GroundHog Days, like the movie...same thing, day after day...

    It was mentioned to me that the order just happened to be what was best inustry wide at the time. That just could have concurrent first, then the nine weeks of just chemo, or my sequence.

    The concurrent as Kent mentioned has the benifit of the chemo (usually it seems either Carboplatin or Erbitux) to enhance and make the radiation more effective...or so I'm told.

    The Zohran, and others are just used for any days that you might feel a little sick... I was lucky, I never got sick other than feeling bad one day when someone kept talking about it...LOL.

    Good news on the PEG, at your weight, it's a great idea having it in place already.

    As for the Amifostine, some start having reactions eventually towar the end of treatment...that being said only to make you aware, not to cause any anxiety.

    I 100% recommend it...as a side benifit, Amifostine also supposedly helps to minimize the thick ropey phlegm you here a lot of people on here talk about... I never had that, and I did get all taste and nearly all salive back, so I can only presume that the Amifostine aided those. Most do seem to get their taste and saliva back regardless of Amifostine though.

    BTW, my reaction to the Amifostine started around day 32, and was just high fevers...nothing more for me...just didn't want to leave you hanging on my side effect. We figured it out in a day or so, stopped the injections and finished treatment.

    Oh, while I think of it, my injections were in my tummy each day before rads....left a small itchy spot, so they'd rotate the injection site around each day.

    Any other questions, please feel free....

    Anyways, more info than you ever wanted to know....

    Best,
    John

    The Emend is pricey stuff, isn't it??
    I just went and picked up my "after chemo" drugs...my co-pay on the Emend was $99...which means I pay for one pill, the insurance company pays for 3...

    Now, please keep in mind, I haven't had a prescription drug in 29 years...so I may be out of touch...but, holy moly! LOL.

    Thank you, John for the heads up on lunch...it never entered my mind...and I'd be starving after 8 hours or so of nothing to eat.

    So I wonder why the Dr. gave me this regiment of nausea meds for the 3 days after chemo...when I say regiment it's because he said it was imperative to follow it to the letter...7am Zofran, 8am Emend (only 2nd and 3rd day after chemo), 10am Compazine, 1pm Ativan, 4pm Zofran, 7pm Compazine, bedtime Ativan....Even tho he spent over 3 hours with me, I now have more questions...

    p
  • osmotar
    osmotar Member Posts: 1,006

    The Emend is pricey stuff, isn't it??
    I just went and picked up my "after chemo" drugs...my co-pay on the Emend was $99...which means I pay for one pill, the insurance company pays for 3...

    Now, please keep in mind, I haven't had a prescription drug in 29 years...so I may be out of touch...but, holy moly! LOL.

    Thank you, John for the heads up on lunch...it never entered my mind...and I'd be starving after 8 hours or so of nothing to eat.

    So I wonder why the Dr. gave me this regiment of nausea meds for the 3 days after chemo...when I say regiment it's because he said it was imperative to follow it to the letter...7am Zofran, 8am Emend (only 2nd and 3rd day after chemo), 10am Compazine, 1pm Ativan, 4pm Zofran, 7pm Compazine, bedtime Ativan....Even tho he spent over 3 hours with me, I now have more questions...

    p

    Drugs
    Hi Phrannie,,,

    I had a very silmilar treatment regime as Skiffin... my onco prescribed the same drugs you have , I was fortunate that I didn't have any nausea issues so most if not all the drugs I never took...plus I received several anti nausea drugs during the actual treatment before the chemo drugs were administered..and YES they were expensive even with insurance. I asked my onco nurse since I didn't use them was there an organization that would take the un-opened bottles of meds and disperse to those who couldn't afford them, unfortunately I already knew in my heart the answer was going to be no but thought I would ask just the same, such a waste. Beprepared for a long day when you have the multi chemo days, I received IV fluids for the first bag,lasiks, then benydry..went to the bathroom a lot..LOL..sooooo pick a comfy chair near the door so you can get out and use the bathroom. John is right about lunch...make it take it, bring water and reading material, books , mags, puzzles what ever to keep you occupied. With the benydryl I never fell asleep just relaxed in a comfy recliner. One thing I forgot to mention was my daughter was with me during my first all day infusion, had the following every 21 days..cisplatin, taxotore and a 5 fu pump that I wore from monday to friday , I hated the punp it was just so darn annoying , it was removed on friday, and the following monday I received an injection of nuelasta. ...what I was getting at was my daughter bought everything that had ginger in it as ginger is supposed to aide in nausea...i couldn't do the tea or the candy, but did take a ginger capsule the friday , sat, and sunday before the treatment and the monday morning of the all day chemo treatments, she also gave me those anti nause wrist bands you wear for sea sickness that hit a pressure point , they said they were used for chemo and last but not least she gave me a toe ring with magnets...I'll be dipped if I know that it wasn't all smoke and mirrors, or that it all really helped..none the less I took the ginger, and wore the wrist bands and toe ring and didn't get sick, maybe it was mind over matter ... but for me it worked.In reading your posts you have a great attitude..I remember that when my daughter and granddaughter left the chemo room for the first time, I started to cry for no reason ,looking back I know that it was the culmulation of everything , being told I had cancer, the build up of tests, tonsil being removed and then finally here it was the first trip to have chemo..well one of the chemo nurses bent down and hggged me and said that they were there and would be there every step of the way..what wonderfu people. If you every have any questions call them , no question is ever silly or out of place. It's a journey , one day and one step at a time. Phrannie sending big hugs from AZ to you and blessings to you as you begin your own journey.

    Linda
  • jtl
    jtl Member Posts: 456
    Sounds like a Plan Phran. I
    Sounds like a Plan Phran. I can't comment on the therapy because I chose what is referred to as a EGFR inhibitor instead of chemo but I wish you nothing but the best.
    John
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member

    The Emend is pricey stuff, isn't it??
    I just went and picked up my "after chemo" drugs...my co-pay on the Emend was $99...which means I pay for one pill, the insurance company pays for 3...

    Now, please keep in mind, I haven't had a prescription drug in 29 years...so I may be out of touch...but, holy moly! LOL.

    Thank you, John for the heads up on lunch...it never entered my mind...and I'd be starving after 8 hours or so of nothing to eat.

    So I wonder why the Dr. gave me this regiment of nausea meds for the 3 days after chemo...when I say regiment it's because he said it was imperative to follow it to the letter...7am Zofran, 8am Emend (only 2nd and 3rd day after chemo), 10am Compazine, 1pm Ativan, 4pm Zofran, 7pm Compazine, bedtime Ativan....Even tho he spent over 3 hours with me, I now have more questions...

    p

    The Plan
    Sounds like they've got it all mapped out for you. I, too, was prescribed Compazine, but only "as needed," and only took a couple tabs during my entire treatment. Only nausea problem I had was likely due to overnight mucous from being horizontal in bed, which is why I became happy to only get 3-hours sleep/night in bed, and more sleep in my recliner. Not sure about the way your Dr wants you to take it as preventative, but maybe others, here, are aware of such.

    One issue does seem to remain- where's the 5-FU in your treatment? Flourouracil, Phrannie. Think most all of us get it right from the start. Good stuff- inhibits C cell replication, and has been used for some 40-years. That's typical of why we get a Port installed in our chest. A possible answer to my question may be due to your getting the rads right from the get-go, along with Cisplatin. Still, I got the impression we all get 5-FU as a H&N Chemo. Perhaps that is the unnamed drug you allude to. Were I you, I would ask your Onco why you're not getting the 5-FU at the start. Possible your Dr thinks the side-effects would be too harsh, what with the rads and Cisplatin, but it might be a concern.

    To me, I think it's a good thing that you're getting the rads right from the get-go, as there is a known Primary target, and such concurrent is the standard for NPC. As John said, it is widely thought that there is an interaction between the Cisplatin and rads that make the rads more effective. Not aware of any facts in regards to this, but it is what I also think is the case. So, that would seem to be a very good sign about your Drs quality of care.

    kcass
  • phrannie51
    phrannie51 Member Posts: 4,716
    Kent Cass said:

    The Plan
    Sounds like they've got it all mapped out for you. I, too, was prescribed Compazine, but only "as needed," and only took a couple tabs during my entire treatment. Only nausea problem I had was likely due to overnight mucous from being horizontal in bed, which is why I became happy to only get 3-hours sleep/night in bed, and more sleep in my recliner. Not sure about the way your Dr wants you to take it as preventative, but maybe others, here, are aware of such.

    One issue does seem to remain- where's the 5-FU in your treatment? Flourouracil, Phrannie. Think most all of us get it right from the start. Good stuff- inhibits C cell replication, and has been used for some 40-years. That's typical of why we get a Port installed in our chest. A possible answer to my question may be due to your getting the rads right from the get-go, along with Cisplatin. Still, I got the impression we all get 5-FU as a H&N Chemo. Perhaps that is the unnamed drug you allude to. Were I you, I would ask your Onco why you're not getting the 5-FU at the start. Possible your Dr thinks the side-effects would be too harsh, what with the rads and Cisplatin, but it might be a concern.

    To me, I think it's a good thing that you're getting the rads right from the get-go, as there is a known Primary target, and such concurrent is the standard for NPC. As John said, it is widely thought that there is an interaction between the Cisplatin and rads that make the rads more effective. Not aware of any facts in regards to this, but it is what I also think is the case. So, that would seem to be a very good sign about your Drs quality of care.

    kcass

    I will ask him, Kent....
    I, like you...thought that the 5-FU might be the drug he's talking about to mix with the Cisplatin the last 3 chemo treatments...the "mystery drug" :).But I'm going to ask if maybe he'll be a little less mysterious, and just tell me.

    As for the anti-nausea meds, I'll follow his instructions until I get a feel for how I'm doing...and then if I feel I'm going to be ok, then I might be able to not take so many. After reading about each and every one of them, all but one has drowsiness as a side effect, I'm thinking....damn....I don't want to be comatose I miss my rads (or have my poor husband have to literally carry me in the door!! :)).

    Linda...your story of the first day alone for chemo choked me up. I keep thinking that somewhere along this path, I'm going to shed some tears myself...I've gotten hyper busy, I've sat and tried absorb everything, my concentration and focus is on the fritz...tears have come close...just haven't allowed myself, I guess. Maybe the day I finally get started on this, will be a day I'll do them all...the relief of getting treatment, the fear of getting treatment, the hope of getting well...all will come at one time...and I'll have myself the "good cry" my mom always said was so cleansing and good for a soul.

    Tonight I'm jumpy as a hell...I'm asking myself why is that...how does it come on with no precipitating factor (other than the obvious, which has been looming for a month)...where's my steady Freddy self? Nothing is happening tonight...just work, and gawd knows I've been doing that a long time...so life at this moment is right along normal...yet the feeling of dread and pending doom is hovering. It will pass I know, just hate when I feel this way.

    p
  • phrannie51
    phrannie51 Member Posts: 4,716
    Kent Cass said:

    The Plan
    Sounds like they've got it all mapped out for you. I, too, was prescribed Compazine, but only "as needed," and only took a couple tabs during my entire treatment. Only nausea problem I had was likely due to overnight mucous from being horizontal in bed, which is why I became happy to only get 3-hours sleep/night in bed, and more sleep in my recliner. Not sure about the way your Dr wants you to take it as preventative, but maybe others, here, are aware of such.

    One issue does seem to remain- where's the 5-FU in your treatment? Flourouracil, Phrannie. Think most all of us get it right from the start. Good stuff- inhibits C cell replication, and has been used for some 40-years. That's typical of why we get a Port installed in our chest. A possible answer to my question may be due to your getting the rads right from the get-go, along with Cisplatin. Still, I got the impression we all get 5-FU as a H&N Chemo. Perhaps that is the unnamed drug you allude to. Were I you, I would ask your Onco why you're not getting the 5-FU at the start. Possible your Dr thinks the side-effects would be too harsh, what with the rads and Cisplatin, but it might be a concern.

    To me, I think it's a good thing that you're getting the rads right from the get-go, as there is a known Primary target, and such concurrent is the standard for NPC. As John said, it is widely thought that there is an interaction between the Cisplatin and rads that make the rads more effective. Not aware of any facts in regards to this, but it is what I also think is the case. So, that would seem to be a very good sign about your Drs quality of care.

    kcass

    I will ask him, Kent....
    I, like you...thought that the 5-FU might be the drug he's talking about to mix with the Cisplatin the last 3 chemo treatments...the "mystery drug" :).But I'm going to ask if maybe he'll be a little less mysterious, and just tell me.

    As for the anti-nausea meds, I'll follow his instructions until I get a feel for how I'm doing...and then if I feel I'm going to be ok, then I might be able to not take so many. After reading about each and every one of them, all but one has drowsiness as a side effect, I'm thinking....damn....I don't want to be comatose I miss my rads (or have my poor husband have to literally carry me in the door!! :)).

    Linda...your story of the first day alone for chemo choked me up. I keep thinking that somewhere along this path, I'm going to shed some tears myself...I've gotten hyper busy, I've sat and tried absorb everything, my concentration and focus is on the fritz...tears have come close...just haven't allowed myself, I guess. Maybe the day I finally get started on this, will be a day I'll do them all...the relief of getting treatment, the fear of getting treatment, the hope of getting well...all will come at one time...and I'll have myself the "good cry" my mom always said was so cleansing and good for a soul.

    Tonight I'm jumpy as a hell...I'm asking myself why is that...how does it come on with no precipitating factor (other than the obvious, which has been looming for a month)...where's my steady Freddy self? Nothing is happening tonight...just work, and gawd knows I've been doing that a long time...so life at this moment is right along normal...yet the feeling of dread and pending doom is hovering. It will pass I know, just hate when I feel this way.

    p
  • Hondo
    Hondo Member Posts: 6,636 Member
    Hi phrannie

    I too think that is a very good plan and I too took the Amifostine on my first radiation treatment. To me it was well worth the cost to save my salivary glands.

    God blessing to you as you begin the journey and remember that many of us will be here to help you along the way.

    Hondo
  • osmotar
    osmotar Member Posts: 1,006

    I will ask him, Kent....
    I, like you...thought that the 5-FU might be the drug he's talking about to mix with the Cisplatin the last 3 chemo treatments...the "mystery drug" :).But I'm going to ask if maybe he'll be a little less mysterious, and just tell me.

    As for the anti-nausea meds, I'll follow his instructions until I get a feel for how I'm doing...and then if I feel I'm going to be ok, then I might be able to not take so many. After reading about each and every one of them, all but one has drowsiness as a side effect, I'm thinking....damn....I don't want to be comatose I miss my rads (or have my poor husband have to literally carry me in the door!! :)).

    Linda...your story of the first day alone for chemo choked me up. I keep thinking that somewhere along this path, I'm going to shed some tears myself...I've gotten hyper busy, I've sat and tried absorb everything, my concentration and focus is on the fritz...tears have come close...just haven't allowed myself, I guess. Maybe the day I finally get started on this, will be a day I'll do them all...the relief of getting treatment, the fear of getting treatment, the hope of getting well...all will come at one time...and I'll have myself the "good cry" my mom always said was so cleansing and good for a soul.

    Tonight I'm jumpy as a hell...I'm asking myself why is that...how does it come on with no precipitating factor (other than the obvious, which has been looming for a month)...where's my steady Freddy self? Nothing is happening tonight...just work, and gawd knows I've been doing that a long time...so life at this moment is right along normal...yet the feeling of dread and pending doom is hovering. It will pass I know, just hate when I feel this way.

    p

    tears
    That was the only time I cried...my type A personality took over and the journey began.
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    Hondo said:

    Hi phrannie

    I too think that is a very good plan and I too took the Amifostine on my first radiation treatment. To me it was well worth the cost to save my salivary glands.

    God blessing to you as you begin the journey and remember that many of us will be here to help you along the way.

    Hondo

    Gloom and Doom
    It's just an anxious time, Phrannie. On one side of it, there's the anxiety of the treatment and what it'll put you thru. On the other side is the wanting that treatment to get started- to get the C out of you. And, somewhere in the middle, is the thinking that it's not fair that this C has invaded your life. Think all of us have been there, for however long.

    Treatment, itself, just is what it is. Very much part of the job of your med team is to see to it you get thru this okay, as you will. All you gotta do is keep them in the Loop as to how you are really doing- that's all you gotta do, and then they'll see to it you're doing okay.

    As for wanting the C to be gone ASAP- that's of the Positive we've all found so useful. Only way to get rid of this problem, so let's get the show on the road, so to speak. That is what you need, and want.

    And, as for the fairness thing- just is as it is, Phrannie. Not a one of us, to my knowledge, robbed a bank, killed anyone outside of military necessity, or did anything else to deserve H&N. And the Lord didn't do this to us. It just happened. All one can do is accept it, then move forward with doing what needs to be done. Once treatment starts you will keep busy with it all, and such anxiety as you're feeling now will just not be there. Could be that's really all that's going-on tonight- you wanna be actively doing what it takes, now, to get this C business taken care of, as it will, and they're making you wait to get started, as they do all of us. You'll get there, Phrannie, and beyond to a very good life on the other side of H&N. That is fact. Know it, and

    Believe

    kcass
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    EMEND
    Yep, definitely pricy, mine was somewhere in the area of $150 per pill...again, mine was the first day of chemo and the next two...they even have the pills numbered.

    Wait until you see the price of the blood cell rejuvinator, (mine was Neulasta)...that was something like $2000 per injection.

    JG
  • phrannie51
    phrannie51 Member Posts: 4,716
    Kent Cass said:

    Gloom and Doom
    It's just an anxious time, Phrannie. On one side of it, there's the anxiety of the treatment and what it'll put you thru. On the other side is the wanting that treatment to get started- to get the C out of you. And, somewhere in the middle, is the thinking that it's not fair that this C has invaded your life. Think all of us have been there, for however long.

    Treatment, itself, just is what it is. Very much part of the job of your med team is to see to it you get thru this okay, as you will. All you gotta do is keep them in the Loop as to how you are really doing- that's all you gotta do, and then they'll see to it you're doing okay.

    As for wanting the C to be gone ASAP- that's of the Positive we've all found so useful. Only way to get rid of this problem, so let's get the show on the road, so to speak. That is what you need, and want.

    And, as for the fairness thing- just is as it is, Phrannie. Not a one of us, to my knowledge, robbed a bank, killed anyone outside of military necessity, or did anything else to deserve H&N. And the Lord didn't do this to us. It just happened. All one can do is accept it, then move forward with doing what needs to be done. Once treatment starts you will keep busy with it all, and such anxiety as you're feeling now will just not be there. Could be that's really all that's going-on tonight- you wanna be actively doing what it takes, now, to get this C business taken care of, as it will, and they're making you wait to get started, as they do all of us. You'll get there, Phrannie, and beyond to a very good life on the other side of H&N. That is fact. Know it, and

    Believe

    kcass

    You do have a way with words, Kent....
    Thank you for leading me by the hand...again. I'm not so good with words, even when I'm talking to myself, you managed to verbalize what I'm feeling...and that helps a lot. I DO want the cancer gone out of my life, and I know that the only way to do it...is climb aboard and ride this train. There is no choice in the fact. Well, there is..but the alternative isn't what I'm looking for either. Lack of power to extricate myself from this situation in a pleasent way...well..that does get to me.

    Also, after reading Patty's post I felt a lot better...just keeping track of what I am grateful for...once I'm actually DOING treatment I'll be actively fighting C everyday, rather than these long waits (which really haven't been that long lately...it just seems like it).

    Tho I don't think I've suffered much over the fairness part...I have felt resentful that I'm having to take on personality traits that aren't mine naturally. I'm not assertive, I'm not comfortable having to question the Dr.'s, or forcing appointments for myself...I don't want to piss anybody off...I'm completely out of my comfort zone...yet, it's my life that is at stake. Which means I HAVE to be out of my "zone". Having had no practice at it, I'm not good at it when I do it, either. Amazingly, this is where many of my prayers have gone...asking God to put the right words in my mouth, help me to be sweetly assertive...and to be heard. Admittedly, being forced out is probably good for me, but it's also excrutiatingly painful.

    Just talking to all of you, who have been thru treatment...are already on the other side...living life with a new perspective gives me what I need to BELIEVE that I too, can and will be there. A little rough road on the highway of life (as you have eloquently said before)...

    p
  • phrannie51
    phrannie51 Member Posts: 4,716
    Skiffin16 said:

    EMEND
    Yep, definitely pricy, mine was somewhere in the area of $150 per pill...again, mine was the first day of chemo and the next two...they even have the pills numbered.

    Wait until you see the price of the blood cell rejuvinator, (mine was Neulasta)...that was something like $2000 per injection.

    JG

    You've got me thinking, John...
    After hearing what the cost is for the blood rejuvinator...I'm going to have the Oncologist's office make sure my insurance will pay for the one he's going to use. I can't remember what the name of it is, but it starts with an "F". It's good to know there is an alternative out there, just in case.

    p
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member

    You've got me thinking, John...
    After hearing what the cost is for the blood rejuvinator...I'm going to have the Oncologist's office make sure my insurance will pay for the one he's going to use. I can't remember what the name of it is, but it starts with an "F". It's good to know there is an alternative out there, just in case.

    p

    Filgrastim
    LOL, you posted the name above....

    Actually the term you used is the medical name for NEUPOGEN, others here have used that.

    They are both quite similar, here's a link;

    NEULASTA or NEUPOGEN

    In reading, they are basically the same, other than Neulasta had been modified to stay in the body longer.

    BTW, just teasing on the name posting from above. I know your head is probably spinning with everything going on. Just relax and try to enjoy the ride.

    As Kent mentioned, once your treatment starts (or at least for me), the anxiety fades...you are doing all you can. From that point it's between your body, Faith, your MD's and technology.

    Just think to yourself, this is the best time medically to get cancer. Technology and recovery are both the best it's ever been.

    I'm sure you'll do fine..., there have been a few on here that have went through all of the emotions you are going through....they are now recovering and even contributing to newbies like yourself.

    Best,
    John
  • phrannie51
    phrannie51 Member Posts: 4,716
    Skiffin16 said:

    Filgrastim
    LOL, you posted the name above....

    Actually the term you used is the medical name for NEUPOGEN, others here have used that.

    They are both quite similar, here's a link;

    NEULASTA or NEUPOGEN

    In reading, they are basically the same, other than Neulasta had been modified to stay in the body longer.

    BTW, just teasing on the name posting from above. I know your head is probably spinning with everything going on. Just relax and try to enjoy the ride.

    As Kent mentioned, once your treatment starts (or at least for me), the anxiety fades...you are doing all you can. From that point it's between your body, Faith, your MD's and technology.

    Just think to yourself, this is the best time medically to get cancer. Technology and recovery are both the best it's ever been.

    I'm sure you'll do fine..., there have been a few on here that have went through all of the emotions you are going through....they are now recovering and even contributing to newbies like yourself.

    Best,
    John

    LOL...I did have the name in the post....
    Gawd...I told ya my concentration and focus are out the window...ha! I'm going to check with the Dr.'s office tho, and make sure the insurance company pays for the Filgrastim...it would be just my luck they'd be saying no to that, but yes to the other.

    p
  • osmotar
    osmotar Member Posts: 1,006
    Skiffin16 said:

    EMEND
    Yep, definitely pricy, mine was somewhere in the area of $150 per pill...again, mine was the first day of chemo and the next two...they even have the pills numbered.

    Wait until you see the price of the blood cell rejuvinator, (mine was Neulasta)...that was something like $2000 per injection.

    JG

    neulasta
    I looked at my EOB and the injection was around $5k insurance paid $3k I didn't have to pay anything probably like you I had to have 3 of those injections. My accountant told me to keep a log of all mileage to every appointment/treatment and all receipts. WOW was I amazedat just the miles alone.