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BarefootBob's picture
BarefootBob
Posts: 72
Joined: May 2012

Hi Gang.

Well, I received my 1st round of chemo on Oct. 1st. I went in that Monday and got a cocktail of Cisplatin and Taxotere. This was administered thru IV for a period of about 5 hrs or so. They then hooked me to a pump filled with 5FU and wore that till Friday when they finally took this poison out and thought everything was going to be better till Rd. 2, two weeks later. But Let's back up a bit, on day 3(wed) I started vomiting and not keeping down and food oor water, take my pain pills etc. for those next three days.

I FELT LIKE DEATH WARMED OVER!! And I wish I were a dramatic person. So Saturday, Sunday, Monday passed with nothing getting better ....still vomiting, mouth filling with sores and mucus so bad it was causing me to gag and vomit. Tuesday I finally went in and got fluids and to see doc because I had lost fifteen lbs in a week and seriously couldn't even find the strength to get out of bed. I got fluids Wed and Thursday and now am finally felling better. Turns out I have Thrush as well as the mouth sores, so speaking at the moment is very painful and kept to a minimum...which may be for the best. My white cell count and platelets were very low so I was given an antibiotic, nausea, and thrush meds.

I am supposed to do this THREE more times, then go to University of Chicago to get Eight rounds of Erbitux with possibly only Six months to live???!!!

I am sorry but this is we're I start to question quality of life. I cant sit back and be practically bed redden for only My boys and wife's to watch me die like this? Not to mention thee tumors are still the same size and the only changes to maybe a couple is that they are softer than before.

What can I do here? I'm lost, in pain, and confused. I feel by saying no to anymore chemo sends the impression I am not even giving this a chance, a quitter. I just don't know what to do. I am a 37 yr old father, husband that is facing ... everything I experience now each day will be the last I have with my family, thanksgiving, Christmas, New Years, all our birthdays etc. I just am not sure this is how I want to play out, which is now, the last 7 months of our lives together.

Scared and Thankful,

BB

Ladylacy
Posts: 517
Joined: Apr 2012

So sorry to hear about your rough time with your chemo treatment. You are too young to give up the fight and especially if there is a chance of beating the cancer. I hope yours hasn't spread anywhere else. My husband is 75 and has been fighting laryngeal cancer and then cancer of the cervical of the esophagus. He has undergone 70 rounds of radiation and 10 chemo treatments altogether plus having a complete laryngectomy, neck dissection and throat reconstruction all since August 2010. His first chemo was just Cisplatin and he had a very hard time with it. His second round of 7 chemo treatments was carboplatin and he had very little problems. We were lucky because neither cancer had spread to lymph nodes or anywhere else for that matter.

Chemo will make your counts dropped. But there is medication for that too. Do you have a feeding tube to help you get the nourishment you will need during treatment?

As far as quantity over quality of life, that is your decision and yours alone. I know I told our sons that any decision was their father's and his alone and that I would stand with whatever he wanted to do. Also don't be afraid to tell your doctor if you are depressed because there is medication to help that and support groups. Everyone fighting this disease gets depressed, not unusual.

Best wishes, Sharon

Skiffin16's picture
Skiffin16
Posts: 8104
Joined: Sep 2009

Bob, you keep fighting through it and communicate with your MD's.

You're way to young, family, father to think anything other than staying positive and fighting with everything you have.

Did they have you on EMEND those first three days of your cycle? Myself and others have had that exact same cocktail, all with EMEND I believe. They also usually give you Zofran or something similar.

Hydration with that stuff is key..., like you somewhere around the second dose, I let myself become a little dehydrated. It was a vicious circle... All I wanted to do was sleep because I was sick, the more I slept, the worse I felt, the less I drank....

I went in that next Monday as I was also getting Neulasta on that day, which boosts blood counts. I had mentioned about being sick...they promptly got two bags of fluids through me...a world of difference that I never let happen again.

On the Neulasta...about the 3rd day in, it was like I had a very bad flu...all of my major bones ached and hurt. That only happened the first cycle, each of the next two were much less noticeable.

Anyways Bob, do whatever you can to try and get a handle on remaining positive and confident that the decisions you have made are the right ones for the long run.

It's only a few weeks of pain and suffering compared to the rest of your life you will have with your family.

Thoughts and Prayers, Strength and Healing,
John

BarefootBob's picture
BarefootBob
Posts: 72
Joined: May 2012

John this will help. We talked about changing things or lightning the load of chemo....I'll know more Tues. when I see doc next.

meaganb's picture
meaganb
Posts: 237
Joined: May 2012

Bob, I really wish I had some wisdom to offer. Please just know that I am praying. Whatever your decision is whether to stop treatment and be able to enjoy the time left with your family or to continue hoping the treatment will work. Cancer sucks. Period. Whether you're 8 or 80 it's so hard when it takes away anything be that health, quality of life, or length of life. I know how hard it must be to face not being with your boys and your wife. I face those same fears with my own daughter and husband each day. I'll be praying that you start feeling better and that your doctors are able to get the side effects from your treatments under control.

phrannie51's picture
phrannie51
Posts: 3853
Joined: Mar 2012

Can't help but think it's the 5FU that is responsible for most of your misery. I'm like the others, I do think you should keep up the fight....the first round of 5FU had me wondering if the last three treatments were necessary, too...because of the pain and misery. My Dr. cut the dose by 20% justifying because of my weight loss...the next two rounds were better...the mouth sores not so intense.

As for the nausea...I too took Emend in the mornings, and had Zophran and Compizine as backups. I had a little ritual to help keep food down. I'd take my Zophran, then 30 minutes later I'd pour a Boost down my tube (I mixed the Boost in a large paper cup with milk, so it'd go down the tube easier). The Zophran kept the food down...I'd do the same during the day with water, I'd water myself after a anti-nausea pill...in order to keep it down.

You may find yourself having to get hydrated during this time, so don't be undramatic and let that slide. You saw how much better you felt after hydration...lack of hydration makes us feel every rotten symptom except thirsty.....weak, nauseated, dizzy, and so sick we don't want to fight.

Ask about cutting the dose of 5FU a tad....and if you aren't getting the anti-nausea meds you need, ask about those too. I truly think that once you get these last 3 chemo's under your belt the Erbitux will seem like a walk in the park.

You can do this...you just need help in getting it done....

p

BarefootBob's picture
BarefootBob
Posts: 72
Joined: May 2012

Is the Erbitux just a shot a week and that's it? And it is not nearly as bad as this cocktail I am taking right now???
That could be a bit of a relieve for a while.

I would really like to know more about it from a personal level rather than a pamphlet.

-BB

katenorwood
Posts: 1863
Joined: May 2012

Hello Bob,
I can't make decissions on others quality of life....but I can tell you that I hear in your words strenghth ! I hear the frustration and fear, anger at this rotten dx. I know that your life is worth every bit of fight you can give it guy ! My prayers for you and your family will be nightly Bob....and don't forget whatever decission you make will be the right one for you and your family. Katie

KareGiver
Posts: 291
Joined: Apr 2011

I am so sad to read your post but can relate because my husband is in a very similar situation. Don't give up on the treatment yet and perhaps ask if there is something less debilitating for you! My husband just had six rounds of chemo (did not have the FU) since May for his mets and was just pulled off the study because of blood counts. His tumors did shrink during that time. He is "enjoying" this time off of treatment but knows the risks. Quality of life - definitely something to be said about that. Saying that, hang in there, check out your options and know that so many of us are sending you thoughts and prayers!

ditto1
Posts: 634
Joined: Mar 2012

I have been on this site for over 6 months now and this may be the toughest reply I have posted. I just do not know what I would do so its hard to suggest to someone else what to do with such circumstances. So I will offer my thoughts, at 37 I would fight it with all they have to offer, tough yes but if you can beat the beast you will then see many more years with your family. If the doctors are saying 7 months no matter what then I guess I would go into my Bucket List approach and enjoy every thing you want and can do and ever thing you can do with your family so that each remaining moment will be precious to you and them. So we will pray for you and your family, and just know we will be here for you anytime you want to vent or just need some cyber hands to hold.

Grandmax4's picture
Grandmax4
Posts: 597
Joined: Dec 2011

for you and your family, I've thought of this, what would I do? I'm sixty six, but my Grandbabies are little...Nate 9, Evan 7 and Win 4...they need me and I surly need and want to see them grow. I can't offer any advice, you must follow the wishes of your family and the feeling in your soul, what I can offer is love, and prayers that your remaining and future life will be pain and illness free...we, on this board, are here for you

fisrpotpe's picture
fisrpotpe
Posts: 1344
Joined: Aug 2010

I was 38 when they told i had cancer, that was 16 plus years ago. back then was the start of seeing more survivors. i was never told i only had so much time left, just the opposite. he told me we are not percentage people, you will either survive or die. i had in my mind i was going to die until i heard that. from that point i was going to do whatever i had too too. ya see, i too had two kids both girls then 16 & 14.
i fought like hell, kept a positive mental attitude, believed i would be fine, kept my faith and never, never, never gave up.

now i have two daughters with 6 year degree's in physical therapy and speech pathology, two son in laws, two grand daughters, one grand son, one grand dog and a best friend sawdust(yellow lab). i am no were near physically like i was then, i have lost much memory.

i knew then, just for my kids and wife that i needed to do what ever it took. my Lord knew when one year survivorship came, i was shocked and thrilled i had made it. back then it was the biggest goal to obtain. it was a mountain that was no hill for a climber that i had completed my first year.

what a blessing by his mercy that i am still breathing, watering my mouth every ten min., and enjoying each day as all days are wonderful, there are just different degree's of wonderful.

i am not here to tell you what to do, i am here just to share only a small part of my story.

prayers going out to you BB, your wife, kids, doctors, nurses, friends. it's going to take all of them to get you thru this, I KNOW YOU CAN DO IT, I DID!!!!!!!!!

john

oh ya, over the next 15 years, i broke my neck, had necrosis on my larynx, cancer on my tongue, trach for life and i have not been asked to trim the roots off the bottom of the grass yet.

bless you bob

longtermsurvivor's picture
longtermsurvivor
Posts: 1837
Joined: Mar 2010

I had hoped this would be easy for you. But no such luck. Whatever you decide to do, I wish you the wisdom to make those decisions and be at peace with whatever plan you reach. Consider just telling your medical oncologist just what you have said here: that this side effect profile is unacceptable under the current circumstances. Doseage reduction, or chemotherapeutic regimen change should be the immediate response.

best to you

Pat

CivilMatt's picture
CivilMatt
Posts: 3094
Joined: May 2012

Hi Bob,

I am sorry for your tough start on this go around. I still hope that a decision to fight will pay some great reward for you and your family. Regardless of the path you follow I will support your choice and hold out hope for many more years of a good life.

Best always,

Matt

Hondo's picture
Hondo
Posts: 5936
Joined: Apr 2009

Sometimes I ask my self the same questions, I have so many problems from side effects of all the radiation that I wonder when will it all stop and how am I to live like this. I can’t swallow, can’t chew, can’t open my jaw, can’t go to the bathroom with out the uses of an Emma, I am always tired, can’t enjoy myself around people, always too cold, and the worse part I can’t have sex, so how am I going to feel like a man anymore.

But then I start to think about my grandchildren and about how close to God I have grown in the last few years. And you know what I am going to pray for strength and I am going to fight it to the last breath in my body. Yes I live in pain and yes it is very hard and the depression gets really bad some days. But it is only for a short time while here on this earth; Jesus told me he has a brand new body for me that will never get sick again.

Bob focus on the positive, your children will see the inner strength in you and it will help them to be strong. I too was giving less then a year to live 61/2 years ago and I am still here, I hurt but I enjoy the little I have and no C is going to take me out before I am ready to go.

I am praying for you my brother
Tim Hondo

KareGiver
Posts: 291
Joined: Apr 2011

Your words always make me think. Bob, sending prayers of guidance for the right path for you and your family.

TheOtherDitto
Posts: 57
Joined: Apr 2012

I'm so very sorry that you seem to have been hit with the worst side effects of your treatment plan. I can certainly understand you questioning if it's worth it. But you said something that I want you to focus on...you said that you hadn't noticed much change in the size of your tumors, but a couple of them had softened. Hang on to that little piece of positive and hope. Doug's swollen nodes started softening after his first treatment and we were told by his doctors that the softening was an indication that the chemo was working. Doug's tumors began to DISAPPEAR after his second treatment. Doug didn't have the 5FU but it sounds like you are experiencing several of the side effects that others who had the 5FU pump also experienced. Doug did have Thrush several times and it can be some REALLY nasty stuff. The rad oncologist finally put him on diflucan for 30 days because it would clear up and then return within a few days to a week. He also used the Nystatin swish and spit. Thrush came to visit Doug after his first treatment with cisplatin in May and he has battled it 3 other times since then. Echoing what others have said - HYDRATION. Doug certainly fought it but I just had the oncology nurse schedule him for fluids beginning the 3rd day after treatment and then every other day after that. I will be praying for you and your family Bob. I pray for strength and peace with whatever decision you make. We are all here to help you through this.

hwt's picture
hwt
Posts: 2008
Joined: Jun 2012

I pray that God gives you the wisdom and strength to make this difficult decision. My heart goes out to you and your young family.

Greend's picture
Greend
Posts: 679
Joined: Feb 2010

First let me say that I am a 61 year old, retired military officer and a hard core conservative living in Alabama however I am also a strong believer (not a radical) in medical marijuana for cancer patients. When I was in this situation my dr recommended smoking weed just before taking my pills. I would take a couple of puffs, wait a few minutes and then take my meds. For some reason it woud not make me high nor did it give me the "munchies" but it did settle my stomach and eased the pains. IT HELPED

I know many people abuse the medical aspects but the facts are that I sincerely believe it saved my life because I too was ready to quit based on quality of life. The problem is doctors write perscriptions for many people for what I don't consider legitimate medical needs.

I will say I had fun explaing this to federal investigators when it came time to renew my security clearance but I was totally honest with them about this issue.

Tim6003's picture
Tim6003
Posts: 1497
Joined: Nov 2011

Like everyone else on here it hurts to see one of our family endure the physical and mental stress you are under....

I can only share my thoughts / opinions .....you know best what is for you ....with that said I can't help but thinking what seemed like forever after my tx the mucous, the pain...and I remember one day I told my wife "I just don't think I can take another day of this" ...but I did.

I think if two of your tumors are softer....that's a good sign they might be shrinking soon...but I'm no doctor of course, but I know you have many people praying for you and / or sending you great mojo ... and I also know as a father how terribly much you love thoee kids and your wife....I say give it some more time and see if they can hold this back.....of course many of us here believe in miracles, and I am praying one for you and your family...

I'm sorry Bob I can not do more, oh so much I wish I could .......thinking of yo uand your family often ...very happy to see an update from you.

Best,

Tim

Oh..by the way ..with what you have been through the first round to beat this (like all of us) ...you are NEVER in the "quitter" camp my friend ...oh so the opposite ....and when you get through this round .....that makes you a whole lot more tougher than words can describe

BarefootBob's picture
BarefootBob
Posts: 72
Joined: May 2012

Have some chocolates and other edibles that a friend from CO sent me that work well on the nausea and pain even. I have no idea why for medicinal purposes only should be legal in all states. I have done some pretty extensive readings on the uses of MMJ by doctors and even found how it can help tumors disappear with the uses of certain stains of the hemp oil. Anyway, thanks.

BarefootBob's picture
BarefootBob
Posts: 72
Joined: May 2012

To all of your responses I will continue the chemo and ask about a little reduction and make sure I'm going to get hydration fluids by the third or fourth day. I love my family so much but when you hear you have that little time, it sucks. Maybe I will forget that conversation ever took place. Today and yesterday have been the best days I've had in a long time, besides the thrush in my mouth that is so painful. Anyway, I love you all for your strength and wisdom and words of encouragement. Hopefully we can do this.

Much love,
BB

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