Hellooo Neuropathyiiiiiiiiiii

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JudiB
Posts: 65
Joined: Sun Mar 05, 2017 5:30 am

Re: Hellooo Neuropathyiiiiiiiiiii

Postby JudiB » Thu Jul 27, 2017 9:41 am

Ana, you are doing sooo well! Maybe just the one final oxi. It's horrid ... I only managed 4 but onc was happy with 4 so me too! I'll never forget the oxi .... my numb feet remind me each day but without it is much easier.
Like you, I tried to forget that I was having chemo and lead my normal life... it's just too much and you have to let things go. I have no kids at home but we have a little farm and doing the animal stuff is important to me, so I do it and it keeps me feeling like I'm coping ok . We have a busy social life too and everyone says. .."you're so positive!" You're so strong!" Sometimes I just want to wimp out and let folks see what's going on inside, but really most only want to see us coping and positive, so that's what we give them!!
What you're feeling is ok...we can't be strong all the time with what this stuff delivers!
Look after YOU, do the things that make you feel good...the rest can wait...this stuff will end and then we can catch up . maybe!!
Make happy memories with your little girl and....eat lots of chocolate!!!! :D (well it helps me!!)
Love and hugs xxx
May 2004 Breast cancer lumpectomy followed by radiotherapy, Tamoxifen 5 years, then Femara 2 years.

Jan 2017 resection around colo-rectal junction
T2bN1 M0
March 2017 Chemo Folfox started. Oxaliplatin for 4 treatments, then just 5 FU and Leucovorin for remaining 8 treatments.
June 2017 clear scan
Last chemo August 2017
August 2017 clear scan

benben
Posts: 215
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: Hellooo Neuropathyiiiiiiiiiii

Postby benben » Fri Jul 28, 2017 9:07 pm

[Ana & Alex] wrote:Dear benben,
Dear all,

Thank you so much for your kind words and for your support. I ended up coming to the hospital and staying the night. I was very unsettled and could not sleep without medication. I don't now if I will be home today or tomorrow, but i know this was the best decision for me.

I really needed a time off and I needed rest from the pressure that I exert on myself everyday trying to keep up with life and trying to "forget" that I had cancer and still going through treatment.

It has became clear for me that what I'm feeling at the moment goes way besides the side effects of the chemotherapy. I am so tired of everything. I have been a mother, a wife, a student and an emotional support for my family since this all started - and seven very intensive months later I'm starting to loose my strengh.

Everything that has to do with this disease I've been managing on my own since the beginning. Medication, decisions, information, side effects management, talking to doctors, going to appointments... mostly alone.

Butt burn? That's ok, we're still going to the park.
Nausea? That's ok, I'm still cooking dinner for the family tonight.
Fatigue? But surely I still can play with my daughter through the afternoon and rest at night time...
Chemo brain? Still published two articles during this last few months about mouth sores and oncological patients...

I'm tired.

And that's o-k.
Everyone is so proud of me, always boosting me up to stay strong and keep on fighting - but this is not always helpful. I am to be allowed to be weak as well sometimes, without feeling that I'm not worthy of the title of a cancer fighting champion.

Cancer is a marathon they say, not a sprint. After speaking to my Onc I'm doing oxaliplatin one more time and then I'm doing Xeloda only, will look at some supplements that can boost the benefit for chemo in my case. I just cannot go through four cycles feeling like I'm dying anymore. I'm at the end of my wits. He told me with 4 cycles we could be assured that 99% from oxaliplatin effect would be attained on a adjuvant setting.

If I have a recurrence I will deal it with when the time comes. Maybe with surgery, maybe with oxaliplatin, maybe.. Maybe.. Maybe I will be one of the lucky ones who doesn't have to deal with it at all.

But now I need to take a pause.
One more Oxi and I'm done.

Thank you so much.. so much.. so much for your support. You have been my main support when it comes to talking about this matters and regaining strength through these difficult days.

God bless you all,
Love,

Ana


Ana, I hope you're doing better and that you were able to get some good rest at the hospital.
Hopefully you're home and taking care of YOU. You can't be the "everything" that you've been prior to treatment, and that's ok.
Rest when you need it. Enjoy your family when you have good days, but delegate some of that responsibility on those around you if you can.
We can't really take care of everyone else while we aren't at our best. We need to focus on taking care of ourselves. Only when we have ourselves in good mind/body can we really be effective helping others anyways.

I hope your treatment so far, and continued Xeloda treatment will yield the best possible results for you.

best wishes,
benben
----------------------
3/29/17 diagnosed CRC - 44 y/o Male
4/17/17 ULAR - Straight anastomosis - no ostomy.
Path: low grade T3n1m0 - moderate diff.
KRAS - NO, MLH1/PMS2/MSH6/MSH2 - Normal.
5/3 med port install
5/22 folfox - first treatment.
3rd treat, delayed - low ANC - reduced to 90% OXI
Granix given, Now Zarxio treatments every session.
Treatment 7 reduced to 75% OXI
Treatment 8 - NO OXI, just Luke and 5FU here on out.
Current - 10 treatments done, LOW RBC

Soccermom2boys
Posts: 141
Joined: Tue Nov 10, 2015 10:29 pm

Re: Hellooo Neuropathyiiiiiiiiiii

Postby Soccermom2boys » Thu Aug 03, 2017 6:35 pm

[Ana & Alex] wrote:Dear benben,
Dear all,

Thank you so much for your kind words and for your support. I ended up coming to the hospital and staying the night. I was very unsettled and could not sleep without medication. I don't now if I will be home today or tomorrow, but i know this was the best decision for me.

I really needed a time off and I needed rest from the pressure that I exert on myself everyday trying to keep up with life and trying to "forget" that I had cancer and still going through treatment.

It has became clear for me that what I'm feeling at the moment goes way besides the side effects of the chemotherapy. I am so tired of everything. I have been a mother, a wife, a student and an emotional support for my family since this all started - and seven very intensive months later I'm starting to loose my strengh.

Everything that has to do with this disease I've been managing on my own since the beginning. Medication, decisions, information, side effects management, talking to doctors, going to appointments... mostly alone.

Butt burn? That's ok, we're still going to the park.
Nausea? That's ok, I'm still cooking dinner for the family tonight.
Fatigue? But surely I still can play with my daughter through the afternoon and rest at night time...
Chemo brain? Still published two articles during this last few months about mouth sores and oncological patients...

I'm tired.

And that's o-k.
Everyone is so proud of me, always boosting me up to stay strong and keep on fighting - but this is not always helpful. I am to be allowed to be weak as well sometimes, without feeling that I'm not worthy of the title of a cancer fighting champion.

Cancer is a marathon they say, not a sprint. After speaking to my Onc I'm doing oxaliplatin one more time and then I'm doing Xeloda only, will look at some supplements that can boost the benefit for chemo in my case. I just cannot go through four cycles feeling like I'm dying anymore. I'm at the end of my wits. He told me with 4 cycles we could be assured that 99% from oxaliplatin effect would be attained on a adjuvant setting.

If I have a recurrence I will deal it with when the time comes. Maybe with surgery, maybe with oxaliplatin, maybe.. Maybe.. Maybe I will be one of the lucky ones who doesn't have to deal with it at all.

But now I need to take a pause.
One more Oxi and I'm done.

Thank you so much.. so much.. so much for your support. You have been my main support when it comes to talking about this matters and regaining strength through these difficult days.

God bless you all,
Love,

Ana


Hi Ana--just wanted to check in on you a week later and see how you were feeling? Hopefully your time at the hospital helped your body to get the rest it needed. Thinking of you! I know it's got to be so tough to not have the energy to play with your little girl right now, but better days are coming and by saving your strength for the treatments you can get on to NEDville that much sooner. :D Hang in there!
8/3/15 Went in with a hemorrhoid, came out with a tumor
8/12/15 Biopsy from colonoscopy confirms RC (45 yrs old--zero family history!)
9/21 - 10/29/15 chemorad 28 tx (with Xeloda)
12/17/15 APR with perm colostomy
Pathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer
2/3/16 chemo port inserted
2/8-6/2/16 8 rounds of Folfox
With these odds, how have I not won the lottery already?!

[Ana & Alex]
Posts: 77
Joined: Tue Feb 14, 2017 5:14 pm
Location: Austria

Re: Hellooo Neuropathyiiiiiiiiiii

Postby [Ana & Alex] » Sat Aug 12, 2017 8:35 am

Dear all,

Thank you SO MUCH for helping me keep my spirits up! I was a wreck after my last treatment, and have fallen into this hole of tiredness, fear and despair. Reading your comments has helped me through the toughest of days. I'm every time so glad I found this forum and thankfull for all of you who chime in, to help a stranger in a such a difficult situation.

Strangely I think that this fall I've experienced has helped me and I was able to get up and now I feel a little stronger. As if letting down my defences and to allow myself a moment of weakness was all I needed to keep going strong again.

My onco team had me started on an Antidepressant but that stuff ain't for me. I was feeling completely away from myself. Instead I'm taking diazepam for anxiety for when the bad side effects start to kick in (day 4 until 7).

Oh well. I have completed yesterday my therapy with oxaliplatin and I have 4 Oxi cycles under my belt. With this number in mind and considering the results of the SCOT and IDEA trials, my oncologist felt secure discontinuing the Oxi and going on strong with an upped dosage of 4g Xeloda until 7 Cycles are completed.

I was reaching the day one of the next cycle with residual neuropathy and I've been falling a lot lately and my ability to drive a car is not the same as before. Cold sensitivity never really got completely away as well...

After reading the results of both studies, beeing on Xelox and beeing high risk only due to my four LN ( if i had only 3 LN i would be in the low risk category - how much difference makes 1 LN? Not much I hope...) I'm comfortable with this path we 're taking.

Next step is to survive this week and starting to think about a surveillance plan.

Thank you all so much and may all of you who helped me through these days be blessed with a life free of this horrible disease.

Love,
Ana
Dx @ 29 yo. Mum (22. Mo) & Wife

12/2016: Rectal AdenoCa G2. CEA 4.3. RAS Wild. MSS. IIIB.
01 - 03/2017: 28 RTx + CHT 2,5 g/d Capecit.
03 - 06/2017: Suplemments and Cimetidine.
05/2017: TME/TAMIS + permanent Colostomy CEA 0.5
05/2017: ypT2N2aM0 (4/15), good cCR, limited pCR
06 - 8/2017: 4x CapOx 3,5 g/d (2x Oxi reduced to 80%)
09 -11/2017: 3x Capecit. monotherapy 4g/d

Soccermom2boys
Posts: 141
Joined: Tue Nov 10, 2015 10:29 pm

Re: Hellooo Neuropathyiiiiiiiiiii

Postby Soccermom2boys » Sat Aug 12, 2017 9:15 am

[Ana & Alex] wrote:Strangely I think that this fall I've experienced has helped me and I was able to get up and now I feel a little stronger. As if letting down my defences and to allow myself a moment of weakness was all I needed to keep going strong.


I understand completely what you mean and let's hope that was your "rock bottom" moment of cancer treatments and that these next four of Xeloda may be your last. No matter what we do treatment wise I think we always have some mental anguish over is this the best treatment route and will this be good enough to get me and keep me in NEDville. We only know we are completely clear of the beast after we have gone on to continue to live long, full lives.

Thanks for the update, I was happy to see you post today! :D
8/3/15 Went in with a hemorrhoid, came out with a tumor
8/12/15 Biopsy from colonoscopy confirms RC (45 yrs old--zero family history!)
9/21 - 10/29/15 chemorad 28 tx (with Xeloda)
12/17/15 APR with perm colostomy
Pathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer
2/3/16 chemo port inserted
2/8-6/2/16 8 rounds of Folfox
With these odds, how have I not won the lottery already?!

JudiB
Posts: 65
Joined: Sun Mar 05, 2017 5:30 am

Re: Hellooo Neuropathyiiiiiiiiiii

Postby JudiB » Sat Aug 12, 2017 9:36 am

Hello Ana, I too was glad to see your post and that you are through the bad stuff! I hope, like me, you notice a huge difference now the oxi has stopped... I really felt that I got my life back! Ok, not all effects have gone but it was tolerable!
I hope all goes well for you now.
Love and hugs xxxx
May 2004 Breast cancer lumpectomy followed by radiotherapy, Tamoxifen 5 years, then Femara 2 years.

Jan 2017 resection around colo-rectal junction
T2bN1 M0
March 2017 Chemo Folfox started. Oxaliplatin for 4 treatments, then just 5 FU and Leucovorin for remaining 8 treatments.
June 2017 clear scan
Last chemo August 2017
August 2017 clear scan

benben
Posts: 215
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: Hellooo Neuropathyiiiiiiiiiii

Postby benben » Sun Aug 13, 2017 11:07 am

Hi Ana, It's nice to hear you're feeling better and you've got plan underway that seems to suit your needs.

Wishing you best,
----------------------
3/29/17 diagnosed CRC - 44 y/o Male
4/17/17 ULAR - Straight anastomosis - no ostomy.
Path: low grade T3n1m0 - moderate diff.
KRAS - NO, MLH1/PMS2/MSH6/MSH2 - Normal.
5/3 med port install
5/22 folfox - first treatment.
3rd treat, delayed - low ANC - reduced to 90% OXI
Granix given, Now Zarxio treatments every session.
Treatment 7 reduced to 75% OXI
Treatment 8 - NO OXI, just Luke and 5FU here on out.
Current - 10 treatments done, LOW RBC

[Ana & Alex]
Posts: 77
Joined: Tue Feb 14, 2017 5:14 pm
Location: Austria

Re: Hellooo Neuropathyiiiiiiiiiii

Postby [Ana & Alex] » Fri Aug 18, 2017 12:22 am

Thank you so much for the love. It really lifts me up reading your replies.

I'm finally being able to be myself a week later after my LAST Oxi infusion. This time, strangely, it wasn't so bad, although nausea and fatigue are pretty worse.

I dropped all of the aprepitant, dexamethasone and Dronabinol pills. Only took some Curcumin. I think I was having some serious side effects from cortisone as well.

I still can't believe I made it through 4 Oxiplatin Infusions. My mother was here with us for the last couple of two and because of her, everything seemed more plausible.

I'm have 10 weeks ahead with Xeloda only and I'm hopping to be able to combined some life quality with it.

Thank you SO MUCH FOR GETTING ME THROUGHT IT! For your support was a true blessing.

I'm so glad I found this forum...
I wish you all cancer free and happy days.

All the best,
Ana
Dx @ 29 yo. Mum (22. Mo) & Wife

12/2016: Rectal AdenoCa G2. CEA 4.3. RAS Wild. MSS. IIIB.
01 - 03/2017: 28 RTx + CHT 2,5 g/d Capecit.
03 - 06/2017: Suplemments and Cimetidine.
05/2017: TME/TAMIS + permanent Colostomy CEA 0.5
05/2017: ypT2N2aM0 (4/15), good cCR, limited pCR
06 - 8/2017: 4x CapOx 3,5 g/d (2x Oxi reduced to 80%)
09 -11/2017: 3x Capecit. monotherapy 4g/d

benben
Posts: 215
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: Hellooo Neuropathyiiiiiiiiiii

Postby benben » Sat Aug 19, 2017 4:13 pm

[Ana & Alex] wrote:Thank you so much for the love. It really lifts me up reading your replies.

I'm finally being able to be myself a week later after my LAST Oxi infusion. This time, strangely, it wasn't so bad, although nausea and fatigue are pretty worse.

I dropped all of the aprepitant, dexamethasone and Dronabinol pills. Only took some Curcumin. I think I was having some serious side effects from cortisone as well.

I still can't believe I made it through 4 Oxiplatin Infusions. My mother was here with us for the last couple of two and because of her, everything seemed more plausible.

I'm have 10 weeks ahead with Xeloda only and I'm hopping to be able to combined some life quality with it.

Thank you SO MUCH FOR GETTING ME THROUGHT IT! For your support was a true blessing.

I'm so glad I found this forum...
I wish you all cancer free and happy days.

All the best,
Ana


Good to hear you're doing better and making progress Ana. Glad your mum was able to help out too.
May you continue your course with Excellent outcome.
----------------------
3/29/17 diagnosed CRC - 44 y/o Male
4/17/17 ULAR - Straight anastomosis - no ostomy.
Path: low grade T3n1m0 - moderate diff.
KRAS - NO, MLH1/PMS2/MSH6/MSH2 - Normal.
5/3 med port install
5/22 folfox - first treatment.
3rd treat, delayed - low ANC - reduced to 90% OXI
Granix given, Now Zarxio treatments every session.
Treatment 7 reduced to 75% OXI
Treatment 8 - NO OXI, just Luke and 5FU here on out.
Current - 10 treatments done, LOW RBC

Basil
Posts: 197
Joined: Thu Mar 16, 2017 12:33 pm

Re: Hellooo Neuropathyiiiiiiiiiii

Postby Basil » Sat Aug 19, 2017 7:14 pm

I had my last infusion 6/26/17 and told the doctors shortly thereafter that if my neuropathy was twice as bad it would only be annoying. It's now twice as bad and definitely annoying. But I'm not going to complain too much. Studies say it will likely pass.
40 y/o male, kids 6&9
Dx 3/16/17, rectal cancer S3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED


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