Questions and help for newly diagnosed

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Nik Colon

Re: Questions and help for newly diagnosed

Postby Nik Colon » Tue Oct 11, 2016 1:54 pm

Speaking of getting disconnected, if you have the pump, my insurance paid for a nurse to come to my home to disco me. I don't know if that is an option, but where I live it is.

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exaussie
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Location: Silverton OR
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Re: Questions and help for newly diagnosed

Postby exaussie » Tue Oct 11, 2016 3:16 pm

We had disconnect at a clinic that also gave fluids via iv which my son needed almost every time. He just couldn't get in as much liquids as needed. It was a non hospital feeling and really made him feel like a real person, those nurses were friends, my son would have one of them come to hospital to access pump because that's their specialty. They knew what they were doing where sometimes in our hospital the nurses were not trained in using a pump access.
As our story didn't end well those lovely ladies came to his funeral.
The clinic we had isn't exclusive I know they are around the country.
Anyway maybe check it out if its available to you. Ours was partnered with a wound clinic.
DS 26 yrs old diagnosed 6/13 T3N2aM1b
Resection 6/13
6 rounds chemo folfax
12/13 Fissure
hernia surgery 12/13
5 months break
Maintenance chemo 3/14
Crazy growth. Liver failing. Folfox and vectibex 7-29-14
Chemo failure Hospice 8/26
Left us 8/28

CarolA
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Joined: Sun Feb 21, 2016 11:06 am
Facebook Username: Carol

Re: Questions and help for newly diagnosed

Postby CarolA » Sat Oct 15, 2016 7:50 pm

kellywin wrote:First, any doctor that says "absolutely not work" should not be practicing, that's ludicrous. There are many people that work through chemo. It's no cakewalk, but side effects differ greatly between people and you never know how it's going to effect you. Also, it's frustrating that doctors continue to not mention Xeloda (pill) in place of the 5-FU (pump) - either option goes with the Oxi (which is the shitty part). But one option might be better for him. Personally, the idea of the pills worked better for me as did the 3 week schedule of infusions. It allowed me to work mostly full time (taking a few days off here and there after infusion days). He needs to have an Oncologist that provides options, not flat statements.

As far as stats, don't bother. They just take a bunch of people and track them, some get full treatment, some get partial, some have many other ailments. I personally wanted to do everything I could, and that means chemo.

It's a hard time and I think you're in a difficult spot - you have no idea what he's going through all you can do is be supportive, that may mean cry with him, be angry with him, do whatever you need. Don't hide your feelings. Don't be the "rock", be yourself. And personally, if someone ever referred to themselves as my caregiver, they'd be in a pine box. I can care for myself. I drove to and from every chemo infusion myself.

Hope that all didn't sound harsh. I am thinking positive thoughts for you & your fiance.

--Kelly



Kelly,
I am currently undergoing Folfox and tried to go back to work full time as a 2nd grade teacher. I lasted 6 weeks. The nausea and the pain in my feet from the neuropathy in addition to fatigue lead me back to medical leave. My last treatment, if I stay on schedule, is November 30 with disconnect from Fu5 pump on December 1st. My question is does the side effects subside quickly? How about Neuropathy , I heard it gets worse after treatment ends. Is this true. I'm scheduled to go back full time Jan 25th is that enough time to recover from the effects of the chemo? Teaching 2nd grade takes a lot of energy... I'm on my feet the entire time.... and a lot of patience something I lose when very tired and feeling ill. Please give me some insight to how I'll feel after treatments. Thanks!
DX Stage IIIB rectal cancer 12/22/15
T3 N1b M0
Grade: 3
Age: 51
2/11/16 Surgery LAR
3/28/16 began 6 wks. 5FU w/ radiation
5/18/16 began Folfox 2 down 10 to go
6/15/16 series of neupogen shots
6/22/16 Folfox 3 down 9 to go continue now on Neulasta shots
10/5/16 Folfox 8.... neuropathy beginning in my toes and finger tips
12/16/16 last Folfox treatment
12/29/16 Ct/Pet scan NED :D
1/27/17 colonoscopy shows scar tissue - needs surgery

Nik Colon

Re: Questions and help for newly diagnosed

Postby Nik Colon » Sat Oct 15, 2016 10:31 pm

CarolA wrote:
kellywin wrote:First, any doctor that says "absolutely not work" should not be practicing, that's ludicrous. There are many people that work through chemo. It's no cakewalk, but side effects differ greatly between people and you never know how it's going to effect you. Also, it's frustrating that doctors continue to not mention Xeloda (pill) in place of the 5-FU (pump) - either option goes with the Oxi (which is the shitty part). But one option might be better for him. Personally, the idea of the pills worked better for me as did the 3 week schedule of infusions. It allowed me to work mostly full time (taking a few days off here and there after infusion days). He needs to have an Oncologist that provides options, not flat statements.

As far as stats, don't bother. They just take a bunch of people and track them, some get full treatment, some get partial, some have many other ailments. I personally wanted to do everything I could, and that means chemo.

It's a hard time and I think you're in a difficult spot - you have no idea what he's going through all you can do is be supportive, that may mean cry with him, be angry with him, do whatever you need. Don't hide your feelings. Don't be the "rock", be yourself. And personally, if someone ever referred to themselves as my caregiver, they'd be in a pine box. I can care for myself. I drove to and from every chemo infusion myself.

Hope that all didn't sound harsh. I am thinking positive thoughts for you & your fiance.

--Kelly



Kelly,
I am currently undergoing Folfox and tried to go back to work full time as a 2nd grade teacher. I lasted 6 weeks. The nausea and the pain in my feet from the neuropathy in addition to fatigue lead me back to medical leave. My last treatment, if I stay on schedule, is November 30 with disconnect from Fu5 pump on December 1st. My question is does the side effects subside quickly? How about Neuropathy , I heard it gets worse after treatment ends. Is this true. I'm scheduled to go back full time Jan 25th is that enough time to recover from the effects of the chemo? Teaching 2nd grade takes a lot of energy... I'm on my feet the entire time.... and a lot of patience something I lose when very tired and feeling ill. Please give me some insight to how I'll feel after treatments. Thanks!

I would say...no one knows for sure. We are all individuals and so our our bodies

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kellywin
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Location: Northern CA

Re: Questions and help for newly diagnosed

Postby kellywin » Mon Oct 17, 2016 4:04 pm

CarolA wrote:Kelly,
I am currently undergoing Folfox and tried to go back to work full time as a 2nd grade teacher. I lasted 6 weeks. The nausea and the pain in my feet from the neuropathy in addition to fatigue lead me back to medical leave. My last treatment, if I stay on schedule, is November 30 with disconnect from Fu5 pump on December 1st. My question is does the side effects subside quickly? How about Neuropathy , I heard it gets worse after treatment ends. Is this true. I'm scheduled to go back full time Jan 25th is that enough time to recover from the effects of the chemo? Teaching 2nd grade takes a lot of energy... I'm on my feet the entire time.... and a lot of patience something I lose when very tired and feeling ill. Please give me some insight to how I'll feel after treatments. Thanks!


Hi Carol - as I said, chemo effects everyone differently, it sucks. I was on Xelox, so the cycle was infusion every 3 weeks - that I think, for me, made it easier to work (more time in between infusions = more time that you feel better). For the neuropothy, are you taking anything? I'd highly suggest taking Gabapentin/Neurontin - it's helped me immensely. Unfortunately, the neuropothy can get worse after chemo ends, so it may peak (a month or 2 after your last treatment) before it gets better, so if you're not taking something for it, start. I honestly can't remember how long until it lessened, I just remember that I stopped falling all the time. I'm still taking neurontin, my neuropothy never fully went away. I also take Norco, I couldn't live without it. So definitely ask for some painkillers too - I know some people have lower tolerances (not me :twisted: ) so you may need to find one that works well for you. I can't imagine how tough it is trying to teach 2nd grade. I am a Bank Executive working in a compliance/risk/fraud role, very demanding & stressful job BUTT, trying to wrangle & teach 2nd graders is probably 10x harder!

With that said, the nausea, make sure you are taking all your nausea meds before you get nauseous - just take them and don't stop until you stop chemo! For me, that uneasy feeling went away very quickly, a week or so, but the fatigue does last, and unfortunately, everyone reacts differently. I never went out on medical leave during chemo - so I can't tell you how long until I felt better. I remember we took my daughter to Disneyland in October (finished chemo end of August) as a treat for having a mom that felt like shit - this was at the height of my neuropothy and my feet were killing me - definitely wrong choice. I must have felt better by early December, as we started snow skiing that month.

All in all, it's a gradual thing, just think of it week by week. But I think that all around shitty feeling dissipates fairly quickly.

Good luck to you!
Kelly, mom 14 yo girl
Dx 11/15/12 Rectal Cancer @ age 40
Stage IIIC
5.5 weeks Xeloda & Radiation - complete 2/5/13
Colectomy 3/12/13, 7 of 14 nodes positive - no ileo
4/24/13-8/20/13 - 5 rounds Xelox, 1 Xeloda only

CarolA
Posts: 17
Joined: Sun Feb 21, 2016 11:06 am
Facebook Username: Carol

Re: Questions and help for newly diagnosed

Postby CarolA » Mon Oct 17, 2016 8:54 pm

Kelly,
Thank you so much for the thorough and very thoughtful response. I just started Neurontin last week .... I will be sure to take it as well as my zofran. Sometime I forget I have them..... I concentrate on the 8 other meds I must take for my bipolar disorder..... I'm so scared of all the meds I need to take now....in addition to all the chemo but my doctor insists I stay on my current meds so I don't have a set back( severe depression) which will complicate my treatments. Again thank you for all your advice. I pray you continue to heal. God Bless
DX Stage IIIB rectal cancer 12/22/15
T3 N1b M0
Grade: 3
Age: 51
2/11/16 Surgery LAR
3/28/16 began 6 wks. 5FU w/ radiation
5/18/16 began Folfox 2 down 10 to go
6/15/16 series of neupogen shots
6/22/16 Folfox 3 down 9 to go continue now on Neulasta shots
10/5/16 Folfox 8.... neuropathy beginning in my toes and finger tips
12/16/16 last Folfox treatment
12/29/16 Ct/Pet scan NED :D
1/27/17 colonoscopy shows scar tissue - needs surgery

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GreenLakeGirl
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Location: Pacific NW

Re: Questions and help for newly diagnosed

Postby GreenLakeGirl » Mon Oct 17, 2016 11:59 pm

CarolA wrote: I am currently undergoing Folfox and tried to go back to work full time as a 2nd grade teacher. I lasted 6 weeks. The nausea and the pain in my feet from the neuropathy in addition to fatigue lead me back to medical leave. My last treatment, if I stay on schedule, is November 30 with disconnect from Fu5 pump on December 1st. My question is does the side effects subside quickly? How about Neuropathy , I heard it gets worse after treatment ends. Is this true. I'm scheduled to go back full time Jan 25th is that enough time to recover from the effects of the chemo? Teaching 2nd grade takes a lot of energy... I'm on my feet the entire time.... and a lot of patience something I lose when very tired and feeling ill. Please give me some insight to how I'll feel after treatments. Thanks!


I did six months of FOLFOX after a IIIb diagnosis and surgery, so I can share my experience. As Nik says, everyone is different. For me, the fatigue and nausea (mine was more of a stomach-not-feeling-right; not as extreme as nausea) lessened quite quickly once chemo was done. The neuropathy, however, got worse substantially over 6-8 weeks after treatment before improving. I can remember at six or seven weeks after treatment #12 that I was so frustrated at the loss of feeling in my hands (no one had mentioned that the neuropathy would do this), and then it just started easing. It was really like a pivot point in how my extremities felt.
2009, age 37 with a 2yo: CC, IIIB (T4N1M0). IBD history
2010-11: FOLFOX, 12 rounds. 5 surgeries (3-step Ileal j-pouch, infection, VATS)
Currently NED.
Mom, you can go the hard way if you want, but the easy way is much easier. ~my 3yo

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kellywin
Posts: 492
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Location: Northern CA

Re: Questions and help for newly diagnosed

Postby kellywin » Tue Oct 18, 2016 10:51 am

CarolA wrote:Kelly,
Thank you so much for the thorough and very thoughtful response. I just started Neurontin last week .... I will be sure to take it as well as my zofran. Sometime I forget I have them..... I concentrate on the 8 other meds I must take for my bipolar disorder..... I'm so scared of all the meds I need to take now....in addition to all the chemo but my doctor insists I stay on my current meds so I don't have a set back( severe depression) which will complicate my treatments. Again thank you for all your advice. I pray you continue to heal. God Bless


You're welcome Carol! Yes, take those zofran pills whether you think you need them or not - pile them on with your other meds, I'm sure it must feel like a crazy amount of pills, but you want to be in front of the nausea and you definitely don't want to get yourself into a depression state right now, so make sure you take everything you need to.

I am thinking positive thoughts for you! And everyone else that's going through this right now. I know it's hard.
Kelly, mom 14 yo girl
Dx 11/15/12 Rectal Cancer @ age 40
Stage IIIC
5.5 weeks Xeloda & Radiation - complete 2/5/13
Colectomy 3/12/13, 7 of 14 nodes positive - no ileo
4/24/13-8/20/13 - 5 rounds Xelox, 1 Xeloda only

mike1965
Posts: 118
Joined: Mon Jan 25, 2016 11:07 pm

Re: Questions and help for newly diagnosed

Postby mike1965 » Tue Oct 18, 2016 4:09 pm

Do the chemo. Give yourself the best odds to defeat the cancer. Cancer is sneaky and can progress very quickly. I went from Stage 1 to Stage 3 very quickly. Chemo sucks and each person reacts differently. I just finished my 6 months on chemo. I still have neuropathy but least in my mind I am doing all I can to defeat this evil cancer. You do not want to look back later and have regrets on I should have done this. I pray all goes well.
Colonoscopy 09/06/15 Doctor removed polyp
DX - Rectal cancer 09/10/2015 T1M0N0
Surgeon recommended wait and see approach 09/2015
Tumor board recommended LARs Surgery 10/2015
Oncologist and PCP recommended LARs Surgery 11/2015
Seeking 2nd opinion from another Surgeon 01/2016
Having Sigmoidscopy on 02/01/16.
Figured out treatment 02/2016
LARS Surgery 03/2016
Stage 3A T1 N1C M0
Chemo Folfox to begin 04/18/16


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