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new thoughts and issues

ok all here is the down low with me, warning it is not pretty. last Monday i went for my 4Th round of chemo, i had lost 19 lbs in 11 days, had stroke level blood pressure, and had been dumping everything i ate for at least 4 days prior, the end result is the pushed my chemo back a week so i have it in the morning and i am on potassium pills as it was way low. i have decided i will give it more rounds as that is how many it took for me to get as bad as i was last week, if my care staff including the onc who at this point is not paid a bit of attention to the way i am reacting and it is not for my lack of trying to tell this man, i have made a hard decision that if in the next 3 rounds i get like i was last week then i am going to one of 2 things. 1. stop the chemo and let nature take its course in which i will not live more then a year,but i will be able to have quality time with those i love.
2.i will just stop them till June when the center gets a new onc and this butt head leaves, and hope this new guy pays better attention to his patients.

as of now you all here on this board have listened to me better then one supposed to be taking care of me, i thank you all for listening and i wish you to know that which ever the 2 i do decide i am happy with my life thus far and i wish and pray that you all have wonderful lives and never let a moment slip by with making sure you tell the ones you love how much they mean to you,and know that my brightest prayers and wish follow each and everyone of you
john

Comments

  • idlehunters
    idlehunters Member Posts: 1,787
    Hey....
    Why you waiting around for another doctor.....why don't you go find a different one? Aren't there others to pick from in your area? You DEFINATELY need a second opinion and you should get that from a totally different facility than the one you are at now. If this chemo is not working out for you then maybe you should try something different. No doubt you need to find someone who is willing to give you qualified advice and options. Good luck

    Jennie
  • Buckwirth
    Buckwirth Member Posts: 1,258

    Hey....
    Why you waiting around for another doctor.....why don't you go find a different one? Aren't there others to pick from in your area? You DEFINATELY need a second opinion and you should get that from a totally different facility than the one you are at now. If this chemo is not working out for you then maybe you should try something different. No doubt you need to find someone who is willing to give you qualified advice and options. Good luck

    Jennie

    Option 3
    Travel to an NCI Comprehensive Cancer Center. There is a good chance that it will be covered by insurance, if not there are a number of programs that cover everything from airfare to lodging.

    You will get better care, and leave with a plan that you can take to any oncologist, always referring back to the NCI doctor when you have any questions or concerns.

    Good luck,

    Blake.
  • steveandnat
    steveandnat Member Posts: 886
    scream and shout
    Give him the riot act for not paying any attention to your side effects they are the scarriest part of chemo. If he doesn't have the time then he needs to find someone who will. Don't let him win. Praying everything works out. Jeff
  • janderson1964
    janderson1964 Member Posts: 2,215
    You have to take control.
    You have to take control. Find another oncologist. That is what I did.
  • druidshadow
    druidshadow Member Posts: 85
    thank you
    again all thanx for the advice, but the nearest is over a hour away out of range for the money i can afford, the nearest nci center is well over 2 hours away again out of range for the funds we have sadly so i am stuck. i have literally yelled and shouted about my issues, with lil to no response.
    john
  • Buckwirth
    Buckwirth Member Posts: 1,258

    thank you
    again all thanx for the advice, but the nearest is over a hour away out of range for the money i can afford, the nearest nci center is well over 2 hours away again out of range for the funds we have sadly so i am stuck. i have literally yelled and shouted about my issues, with lil to no response.
    john

    Call the NCI
    Get a consultation. You will be surprised at the programs they have that you could fit into. Trust me, you won't regret the visit.

    Blake
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900
    tell the onc where to go nicely
    dear john you are in a pickle, a difficult place,
    the inadequancies of your care and your frustrations are clear.

    so you have outlined a couple of options, and i would like to suggest that
    , ok so 19pounds is not good, but its likely mostly fluid. i bet your severely dehydrated.

    its just a suggestion and i hope you have the resources ie the energy, the money and the time to look beyond the care you are receiving. likely given you have demanded more and well received less tan is what woul;d make you happy.

    this just goes to show how much care and compassion supposedly terminal cancer patients get, some anyway, yes not all.

    well your spot it just stinks. so one ray of hope, and its real is to leave the lack of care in the conventional system. try and find great supportive care from a naturopath or a functional gp. you can call metametrix and they can refer you to a doctor in your area, hopefully.

    your message of love, and not letting moments slip by, is why is spend my time here, our time is precious, but so is the bond of being afflicted by this god aweful challenging pain in the arse disease. but remember its just a few dam cells, yes i know they are trying hard to kill us. maybe we can out smart them, i hope so. no false hope from me, the real hope is that everyday we live exceedingly well despite the pickle life puts us in.

    I hope your post gives you a huge measure of peace, you have clearly offloaded your stress and got heaps of amazing suggestions.

    so what now, well you can pray, meditate or throw a dart at the board of your top 5 suggestions. you can and will make a great decision for your short term care tomorrow and your longer term care.

    thanks for sharing your troubles, for some of us with a rising cea, well it put my troubles in perspective.

    love back at you and your family. please don't cash in your chips just yet!.

    everyday we all learn more about surviving, no place on the planet has more knowledge and wisdom then here. you have tamped into an amazing community and we care alot.

    their is so much to do to fix dehydration if that the key to your wait loss, i cannot go into to it here, diagnosising and offering concrete advice from the alternative universe is prohibited here.

    my onc did not fix my diarrhea, my naturopath did.

    enough said.

    hugs,
    Pete

    ps let us know how you are travelling.
    pps if your onc is so serious, annoy him a little and tell him you have become a tree hugging juicing meditating vegan hippie like me and watch him have a heart attack on the spot. only just sort of. actually before your onc has the heart attack you better tell him you are joking. even if you are not. its to stressful for most oncs to think that you could try something as radical as diet. after all look at what position his care has got you into now. goodluck and i will be remembering you in my prayers.
    pps try and have some fun in the sun! and the only important C word is C for chocolate, i won't even say the other word. dark organic chocolate to excess of course. but thats my only vice.
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900
    i just saw your other reply about money
    most of the best alternative cancer therapies are not expensive.
    goto go do my enema now.

    be well!

    hugs,
    pete

    Ps if your interested in cheap alternative things checkout my blog.
    especially liposomal vitamin C. , but i would work on diet first.
    if you find a good naturopath and they don't fix your gut then drop them.
    remember good input = good output with a healthy GIT =gastro intestinal track
    this is the acid test of all good care, don't stop looking for great care until you are crapping like a trooper. sorry to be so blunt, but ironically our but started most of our problems and from my learnings its actually where the cure starts.
  • smokeyjoe
    smokeyjoe Member Posts: 1,425

    i just saw your other reply about money
    most of the best alternative cancer therapies are not expensive.
    goto go do my enema now.

    be well!

    hugs,
    pete

    Ps if your interested in cheap alternative things checkout my blog.
    especially liposomal vitamin C. , but i would work on diet first.
    if you find a good naturopath and they don't fix your gut then drop them.
    remember good input = good output with a healthy GIT =gastro intestinal track
    this is the acid test of all good care, don't stop looking for great care until you are crapping like a trooper. sorry to be so blunt, but ironically our but started most of our problems and from my learnings its actually where the cure starts.

    Are you getting the proper
    Are you getting the proper pre -meds with your chemo.?? And the ones you take the following day?? I also used to get an injection (which I can't remember the name of) just prior to the chemo infusion which helped a lot.
  • LilBitaWitch
    LilBitaWitch Member Posts: 10
    sounds so familiar
    I hadn't finished reading 3 lines of your post before my blood pressure started to rise. It sounded almost like you were writing my story about the 1st time I went thru chemo (I'm on #3 but that is another story & reason I got on here this morning). If you are doing just IV in office check with your doctor and see if they have a pump option. You have to stand up for yourself and tell the doctor that you do not have to "suck it up" or "deal with the side effects it is part of the treatment" or any other cliches he comes up with. I have done treatment both ways and I will say this the pump is much better. I know that standing up to a doctor is not easy because we all start out with the idea that they are doing what they think is the best for us. That is not always the case as I discovered over the past 5 yrs. Don't go the wait and see route there has to be another option.
  • Lifeisajourney
    Lifeisajourney Member Posts: 216
    You have to make a decision
    and live with it....I try to stay off the forum mostly because I have strong feelings about chemo. I felt great after surgery, chemo nearly killed me and I have never been the same since, but it could be why I am alive...I just don't know...but after a failed liver resection at a NCI hospital, I refused chemo. Given 6-to 1 year. Surgery will be 1 year 6/l. Discovered mets in January 11. Onc says it is a slow growing cancer. I don't do much, but enjoy food/family/visits...and feel livable...CEA in Feb. was 14 haven't got March results will when I go in April. Keep my port in, I might change my mind, but just a FYI.....I do not know what would have happened if I refused folfox till I got mets, maybe I would have got mets faster or just felt good from 1/09 till 1/11....we are all diffent and I don't propose you don't take chemo, but don't think you are alone in that decision. I have no idea what will happen, but I don't know what would have happened on chemo, just know I would feel sicker.....it is a horrible position to be in and I don't have a clue on what you should do, but know you are not alone if you decide no chemo..Good luck/God bless...Pat
  • druidshadow
    druidshadow Member Posts: 85

    i just saw your other reply about money
    most of the best alternative cancer therapies are not expensive.
    goto go do my enema now.

    be well!

    hugs,
    pete

    Ps if your interested in cheap alternative things checkout my blog.
    especially liposomal vitamin C. , but i would work on diet first.
    if you find a good naturopath and they don't fix your gut then drop them.
    remember good input = good output with a healthy GIT =gastro intestinal track
    this is the acid test of all good care, don't stop looking for great care until you are crapping like a trooper. sorry to be so blunt, but ironically our but started most of our problems and from my learnings its actually where the cure starts.

    thank you
    thank you pete for the advice i have looked in to it but i am in the back woods of alabama,usa and they are way againest most new age stuff store pop up and close in a matter of months.
    john
  • druidshadow
    druidshadow Member Posts: 85
    smokeyjoe said:

    Are you getting the proper
    Are you getting the proper pre -meds with your chemo.?? And the ones you take the following day?? I also used to get an injection (which I can't remember the name of) just prior to the chemo infusion which helped a lot.

    only meds
    only meds i am on is for nausea and potassium cause i have such a short bowel the meds for my other side were not working. the rest is folfiri and i start the avastin next month
    john
  • janderson1964
    janderson1964 Member Posts: 2,215
    smokeyjoe said:

    Are you getting the proper
    Are you getting the proper pre -meds with your chemo.?? And the ones you take the following day?? I also used to get an injection (which I can't remember the name of) just prior to the chemo infusion which helped a lot.

    I think the injection you
    I think the injection you are talking about is atrophine.
  • smokeyjoe
    smokeyjoe Member Posts: 1,425

    I think the injection you
    I think the injection you are talking about is atrophine.

    Thanks Yes Atropine...it's
    Thanks Yes Atropine...it's an injection at the time of your infusion. I helped my stomach a lot, ask for it. I also was given a steriod (help me out can't recall the name again) onedestron?? and anti-nausia meds, and anti-diarrhea meds. My onc. prescribed both pills for nausia and I have all the vials for injection of anti-nausia..I never had to use those. The oncology nurses wouldn't even consider giving the chemo. unless I had remembered to take them at home, when I had forgotten they gave them to me there and waited for them to get into my system before they would even administer the chemo.
  • belindahill
    belindahill Member Posts: 144
    Chemo
    Hi John, please dont stop chemo just yet, my husband is still here after 2o mths, he tries so hard but the chemo has helped him, change your onc, dont give up.
  • geotina
    geotina Member Posts: 2,111
    John:
    Not so fast my friend. It is way, way too early to even remotely consider option #1. Yep, that Folfori can cause significant bowel problems as you are experiencing. There are more options out there. Have you thought about presenting yourself in the ER for help rather than just this one doc. Remember you are paying them so make them listen, don't let them brush you off. Like someone else said, my blood boiled when I read your post. This simply should not happen.

    No one wants to go into the hospital but that may be the place for you right now. They can address the weight issue and "dumping" issue. Just maybe something else is going on not related to the cancer, i.e. C-Diff.

    Take care - Tina
  • joemetz
    joemetz Member Posts: 493
    lots of good advice
    Hi John

    there are many here that have posted good advice. I won't repeat them, but i want to focus on your mind and your heart.

    yes, it might be easy to stop chemo and let nature take its course... but my dad always told me, "if it's easy, everyone would do it"

    this cancer battle isn't easy... and cancer survivors are winners.
    yes, you CAN be a survivor.

    one person posted to "take control" of your docs. I agree with that... but i also read that you're limited on your choices due to location and cash flow. I get that.
    but have you considered moving to a new area, closer to a cancer center?
    not sure of you're entire story, but i have to urge you to work hard and focus on YOU.

    Set your goals, and go for it.
    don't let money limit you... get ahold of the cancer center that is 2 hours away and see if there is a foundation to help you. (i'm sure there is). Ask for clinical trials or something to help you get the treatments you deserve.
    if your goals are to let nature take its course, that's your choice... but i don't quite understand how you can just give up. If you choose a more natural direciton like Pete shared... awesome. At least you're making a decision on a path for success.

    set your eyes on succes.

    19 lbs in 11 weeks sounds like a lot... but did you have 19 lbs to lose?
    for me, i was a bit overweight... in August 2011 i was about 220lbs (5'10")
    I had surgery in December 2011 and began the chemo-cocktails on Jan 3, 2012.
    today, I'm about 183lbs. Nearly 40 lbs. I might be at my "natural" weight.
    yes, i look like i'm 10 years older, in nearly 4 months with all the erbitux rash and skin problems... but man, this is worth the fight.

    we all want to get to Heaven one day, but not yet.

    make a choice in your mind of where you want to be in 5 years. think big.
    I don't care if a doctor tells you you only have X years to life... remember, all these doctors are "practicing" medicine.

    and, in your doctors case, it sounds like they don't have a pasion for saving lives or compastion for you. either change them, or fire them... and move on to another doctor. Even if you have to beg for the money to go the 2 hours for treatment.

    sorry to preach, but I urge you to Never Give Up.

    set your eyes on your goals and know that you are important to someone in your life. And, it will be worth the fight!

    my best to you.
    and, you are in my prayers!

    joe
  • thxmiker
    thxmiker Member Posts: 1,278
    Check out the Wellness
    Check out the Wellness Community for help. They will help advocate for you and negotiate for help.

    First and foremost, One has to be their own advocate! Speak up and tell the onc that they are hurting you.
    Best Always! mike
  • druidshadow
    druidshadow Member Posts: 85
    hello again
    well the onc will be changing in June cause this one is leaving and the have set me up to come in to get iv fluids on the Monday after my chemo round this time instead of me going to the er yet again, and the thought behind opt.1 is that i can enjoy what i have left not giving up but i have done in my only 34 years is work for others and care for others and their wants and needs now i want some joy in my life and actually be able to enjoy it while i can. my onc does not have me on a set number of rounds so i have no clue when i would ever feel well enough to enjoy anything. the worst part is not i have a skin ulcer on the site where they cut me open the first time and removed 5 out of my 6 feet of colon,they also biopsied one of my many liver mets. i am just tired of feel like my wife's patient rather then husband, she already takes care of her aunt with sever dementia which is why moving is out of the option cause we live with her and care for her as much as she lets us, she was born in 31 and is still a very Independent woman but there is time she needs us like when she forgets her meds and forgets to eat, no one else in their family can even remotely handle her lol. i have come to care for her over the last few years.
    john
  • WinneyPooh
    WinneyPooh Member Posts: 318
    John, your issues are not the end of your world
    John, I have so many pooping issues it is sick, heck just last week i was pumping gas and my bowels just let loose and i had to continue pumping gas with runny poop all over my legs. Some times the doctors have no idea how bad we have it. I look very normal and healthy and my cancer still active and chemo every three weeks is for the most part ok. Most side effects are within the first week following Chemo. I to am broke and have no money for treatments, I have to have mine at the regional hospital and my doctor sees me for free. My point is don't give up and don't worry about the money, find a new doctor, the american cancer society has gas cards for gas to treatments, and this will help. Also ask if you can go to an every three week treatment schedule, this helped me ( they don't do this because it is not protocal, but if your cancer stays under control it should not matter if you do chemo every three weeks instead of every two weeks.) As far as keeping food from running thru you, Greek Yogurt, is what helps me and a little 420,. I hope you find the help you need.

    Penny
  • joemetz
    joemetz Member Posts: 493

    John, your issues are not the end of your world
    John, I have so many pooping issues it is sick, heck just last week i was pumping gas and my bowels just let loose and i had to continue pumping gas with runny poop all over my legs. Some times the doctors have no idea how bad we have it. I look very normal and healthy and my cancer still active and chemo every three weeks is for the most part ok. Most side effects are within the first week following Chemo. I to am broke and have no money for treatments, I have to have mine at the regional hospital and my doctor sees me for free. My point is don't give up and don't worry about the money, find a new doctor, the american cancer society has gas cards for gas to treatments, and this will help. Also ask if you can go to an every three week treatment schedule, this helped me ( they don't do this because it is not protocal, but if your cancer stays under control it should not matter if you do chemo every three weeks instead of every two weeks.) As far as keeping food from running thru you, Greek Yogurt, is what helps me and a little 420,. I hope you find the help you need.

    Penny

    Greek Yogurt and 420
    i had to google the 420 and it took me a minute... but yes, 420 and some other cookies that guys at work make for me are amazing.

    better than ANY nausea meds i've taken.

    thanks for sharing.

    Joe
  • druidshadow
    druidshadow Member Posts: 85

    John, your issues are not the end of your world
    John, I have so many pooping issues it is sick, heck just last week i was pumping gas and my bowels just let loose and i had to continue pumping gas with runny poop all over my legs. Some times the doctors have no idea how bad we have it. I look very normal and healthy and my cancer still active and chemo every three weeks is for the most part ok. Most side effects are within the first week following Chemo. I to am broke and have no money for treatments, I have to have mine at the regional hospital and my doctor sees me for free. My point is don't give up and don't worry about the money, find a new doctor, the american cancer society has gas cards for gas to treatments, and this will help. Also ask if you can go to an every three week treatment schedule, this helped me ( they don't do this because it is not protocal, but if your cancer stays under control it should not matter if you do chemo every three weeks instead of every two weeks.) As far as keeping food from running thru you, Greek Yogurt, is what helps me and a little 420,. I hope you find the help you need.

    Penny

    thank you
    thank you for the advice and where would i apply for the gas card?
    the 420 i use when i can find and afford it cause it is not exactly legal here in the lovely state of alabama.
    john
  • WinneyPooh
    WinneyPooh Member Posts: 318

    thank you
    thank you for the advice and where would i apply for the gas card?
    the 420 i use when i can find and afford it cause it is not exactly legal here in the lovely state of alabama.
    john

    gas card
    John, you should be able to call the american cancer society in your area and someone there should be of help, my doctors office social worker helped me, have a great day, penny
  • Jaylo969
    Jaylo969 Member Posts: 824

    thank you
    thank you for the advice and where would i apply for the gas card?
    the 420 i use when i can find and afford it cause it is not exactly legal here in the lovely state of alabama.
    john

    NCI Center
    Hi John,

    So sorry you are having to go through stuff that you should not be having to endure.When I saw your comments about "the lovely state of Alabama" I had to chuckle. I too live in this lovely, but somewhat backward state ( my opinion only...no offense to anyone). I have been fortunate in that I live close to Birmingham and there are some very good cancer centers here. UAB is a NCI Center and St.Vincent's and Brookwood both have very fine cancer centers.I don't know where you live but I am assuming that the 2 hour drive you mentioned was to Birmingham?I would suggest you try talking to a social worker if there is one available there and see if they can help you to find funding to get to a better health facility.

    I didn't google 420 but I am assuming it is mj? Unfortunately you go to jail here for that and jail and cancer don't mix.

    I am wishing you the best. If you have any questions about any of the facilities here or need me to check out any info for you send me a PM or a shout out on this site.
  • WinneyPooh
    WinneyPooh Member Posts: 318
    Jaylo969 said:

    NCI Center
    Hi John,

    So sorry you are having to go through stuff that you should not be having to endure.When I saw your comments about "the lovely state of Alabama" I had to chuckle. I too live in this lovely, but somewhat backward state ( my opinion only...no offense to anyone). I have been fortunate in that I live close to Birmingham and there are some very good cancer centers here. UAB is a NCI Center and St.Vincent's and Brookwood both have very fine cancer centers.I don't know where you live but I am assuming that the 2 hour drive you mentioned was to Birmingham?I would suggest you try talking to a social worker if there is one available there and see if they can help you to find funding to get to a better health facility.

    I didn't google 420 but I am assuming it is mj? Unfortunately you go to jail here for that and jail and cancer don't mix.

    I am wishing you the best. If you have any questions about any of the facilities here or need me to check out any info for you send me a PM or a shout out on this site.

    Jail
    Not to steal Johns post, but I think it is insane we have to worry about using something which is illegal but very much the best remedy for us. I know I would be lost on chemo days without it.
    I wish I lived in a state smart enough to realize the benefits.
    P.