Feeling really sad and in need of support

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NHMike
Posts: 1550
Joined: Fri Jul 21, 2017 3:43 am

Re: Feeling really sad and in need of support

Postby NHMike » Sat May 26, 2018 8:53 am

lakeswim wrote:
lovelife789 wrote:
the whole self identity is diminished into a statistics


I don't want to hijack VeggieLvr's stream but I wanted to tell you that the sentence above really resonates with me. It's all about the damn statistics. But I guess those stats have gotten us some of the treatment we have. I try to remember that when I get mad when they cite yet another percentage.

So much of what you said hit home - but I am curious about the chinese stretching. Where can I find info on that? I find myself lying around too much already.

AND I am curious about the first bite thing. Mine seems bad after just this first round. So, it gets worse and worse? How did you eat? I start to dread it. I feel for you if yours was particularly bad.

Lastly, my infusion nurse and my homecare nurse both told me that the experience I have this week (after my first FOLFOX infusion) will be how it will be for all the rounds. But everyone here says it gets worse! Who to believe? (I believe the patients!)

Thanks for your post.


I found the first bite thing annoying and it does get worse with time if you don't lower the dosage or take breaks. I found that true for all of the symptoms.

I have a friend on another board and he was Stage II and in his mid-70s and he had other health problems. He had a very rough time with FOLFOX and he quit after two rounds. He stated that he did the research on the numbers and that he wanted quality of life over quantity of life. He told me that we all have to make our own individual decisions. I'm Stage III so my considerations are different from his and I don't have the co-morbidities. Our approach was to decrease dosage and take breaks. The second round of XELOX clobbered me. Could I have continued at full-strength? I'm pretty sure that I could have. But I wouldn't have been able to work full time (well, I could be present but I wouldn't be giving my employer what they pay me for). A lot of other stuff wouldn't get done too.

Those statistics drive research and development and what gets worked on. And it drives treatments. I see people on clinical trials getting half the chemo that I got and think: that would be really nice. And I know that treatments will get better in terms of less pain, less treatment and less loss of functionality. Just not in time for me. But I do benefit from what people went through before me.

On first bite, if you forget, and, it's easy to do, you just get the pain. If you can prepare, then it's mentally easier. I had the painful tears too - and the answer to that is not to cry. But sometimes you do. I find that being able to mentally prepare for pain makes it less of a problem - to some degree.
6/17: ER rectal bleeding; Colonoscopy
7/17: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda +radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8
MSS, KRAS G12D
10/17: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx 8 cycles 12/17-6/18

lovelife789
Posts: 106
Joined: Thu Aug 24, 2017 5:28 am

Re: Feeling really sad and in need of support

Postby lovelife789 » Sat May 26, 2018 9:56 am


So much of what you said hit home - but I am curious about the chinese stretching. Where can I find info on that? I find myself lying around too much already.


I found an English link, it's not really stretching as in stretching that I do when I do yoga, coz my port gets in the way when I do yoga... this set of hand swing stretching looks really easy but you feel your fingertips start to warm up after 5 mins or so. Note I'm the kind who always have cold hands, circulation is not good, but after doing this, circulation improved and neuropathy slowly dies down.

https://www.youtube.com/watch?v=2iG7jXqL0m0

AND I am curious about the first bite thing. Mine seems bad after just this first round. So, it gets worse and worse? How did you eat? I start to dread it. I feel for you if yours was particularly bad.

Lastly, my infusion nurse and my homecare nurse both told me that the experience I have this week (after my first FOLFOX infusion) will be how it will be for all the rounds. But everyone here says it gets worse! Who to believe? (I believe the patients!)


My first bite thing started at around the 2nd or 3rd round of Folfox and at first I thought it's just some soreness at the jaw area, but it did get worse. BUTT the good thing is you find ways to manage it, what I did was I left the first bite of food in my mouth and count to 50 before I slowly chew my food and I decrease the time of counting with each bite I took. I didn't think it was really painful, it was just annoying. I think the soreness comes when saliva comes out from your jaw, so just take food slowly, you will manage.

For me, really all the side effects accumulated, gradually. In the end I even had an anaphylactic reaction to Oxi, but I managed with the help of steroids. It didn't take me long to bounce back though...like I said 2 weeks after I was travelling, 1 month later I was on a trip during which I went shopping for at least 4-5 hours per day.

Good luck!!! :)))
F/38 - Dx 8 Mar 17, CEA 80.5
Stage IV Sig. Colon, 6 Liver mets, T3N0M1a, KRAS NRAS Wild, G2=Moderately differentiated
3/17- 6/17 - 6 rounds of FOLFOX + Erbitux - CEA 2.5
7/17 - 1st Liver resect/Colon/Gall, all clear margin
8/17 - 2nd Liver resec
9-12/17' - completed 13 rounds of FOLFOX - CEA 1.0
1/18 - Clear PET SCAN - CEA 1.4
3/18 - Clear MRI - CEA 0.8
6/30 - PET SCAN showed a lung nodule that has always been there grew from 5mm to 8mm - CEA 1.0
Aug - VATs scheduled

lovelife789
Posts: 106
Joined: Thu Aug 24, 2017 5:28 am

Re: Feeling really sad and in need of support

Postby lovelife789 » Sat May 26, 2018 10:01 am

Those statistics drive research and development and what gets worked on. And it drives treatments. I see people on clinical trials getting half the chemo that I got and think: that would be really nice. And I know that treatments will get better in terms of less pain, less treatment and less loss of functionality. Just not in time for me. But I do benefit from what people went through before me.


Salute to this mindset and this way of looking at it.
F/38 - Dx 8 Mar 17, CEA 80.5
Stage IV Sig. Colon, 6 Liver mets, T3N0M1a, KRAS NRAS Wild, G2=Moderately differentiated
3/17- 6/17 - 6 rounds of FOLFOX + Erbitux - CEA 2.5
7/17 - 1st Liver resect/Colon/Gall, all clear margin
8/17 - 2nd Liver resec
9-12/17' - completed 13 rounds of FOLFOX - CEA 1.0
1/18 - Clear PET SCAN - CEA 1.4
3/18 - Clear MRI - CEA 0.8
6/30 - PET SCAN showed a lung nodule that has always been there grew from 5mm to 8mm - CEA 1.0
Aug - VATs scheduled

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ANDRETEXAS
Posts: 581
Joined: Fri Feb 14, 2014 11:01 am
Location: Austin, Texas (University of Tennessee alumnus)

Re: Feeling really sad and in need of support

Postby ANDRETEXAS » Sat May 26, 2018 10:26 am

VeggieLvr: I walked two miles a day (even with the pump by my side :wink: ) for the first six rounds or so. Then maybe 3-4 days a week for rounds 7-12. I was on a Tuesday hook-up, Thursday off schedule (and then 11 days free). I know one day in the latter rounds I was in bed 15 hours one day. So you will get more tired. Even today, if I see a sofa - I can lie down and be out in less than 5 minutes. I guess a good side effect of chemo is that I can go to sleep within five minutes of going back to bed. lol I did have trouble buttoning my shirt and putting on cuff links, but that went away over time. I can do all of that splendidly now. The neuropathy in my feet was exacerbated by my Type 2 diabetes, but that too has subsided immensely. I still walk 2-3 miles a day without any pain. Although I did not take any time off during my treatment, I don't see why you could not take a week off here and there with your doctor's approval. I have read that you do not have to take 12 rounds of FOLFOX, but with the help of my doctor and our discussions about my side effects, we decided to move forward with 12 with the oxi, That was our decision. But remember, each person is different and reacts to drugs differently. You know your body better than anyone. And again, stay positive!
2014
2/10 - Colon resect
2/13 - DX- Stg IIIb
3/7 - Port placed
3/11 - FOLFOX (12 rds w/full oxi)
8/14 - Chemo finish
8/25 - CT- Inc
9/5 - clean PET
12/10- clean CT
2015
3/2 - Clean colonoscopy & port removed
3/4- clean CT
9/21- clean CT
2016
3/23- clean CT
2017
2/22- clean CT
2018
3/21 - clean CT
4/11 - clean colonoscopy

ONE DAY AT A TIME !

Rikimaroo
Posts: 132
Joined: Tue Dec 20, 2016 8:48 pm

Re: Feeling really sad and in need of support

Postby Rikimaroo » Sat May 26, 2018 10:35 am

VeggieLvr,

Just like you I am going through the same things. Nueropathy in hands and feet, not severe but annoying at times. Numbness mostly. I actually did Chemo Folfox dec 2017 to feb 2018, first six rounds. Then 3 months off for surgery etc...Then have to do another six rounds because of some concerning pathology results and to be safe, stage 4.

This 2nd time around I think it is tougher. I had my first round on 5/23 infusion oxi/leuco then pump home with me. The pump is annoying with that whirring noise and just having it hook up. Makes it hard to sleep. The Oxi is devastatingly stressful. Cold sensitivity like you even to room temp liquids. This time around nausea peeked its ugly face, even though I have not thrown up the urge or feeling arises, I took a zofran this morning and it helped.

Typing right now feels weird because of neuropathy in my fingers. I hope this buries any residual cancer and I am done with it. Keep up the fight and stay strong, I know its hard I am fighting alongside with you. We have little children to think about and want to know we did everything in our power to fight this and make it to NedVille. I am NED right now. This is all preventative.

PS: Throat locking up feeling is so annoying and so is first bite syndrome, but that can be handled if you slowly put food and chew slow...


Riki
Diagnosed at 38 y/o male, 3 kids 7,9,14 - Now 39.
RC T3N1M0
Chemo Rad, CCR - W&W 5/2017
Local Recurrence, discuss options 11/26/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/15/2017, folfox/oxapalatin + avastin starts on the 12/20/2017
Blood Clot in Neck 1/16/2018, stop avastin, continue FolFox
TME/Liver Resect 4/3/2018
Biopsy Results 0/8 Lymph nodes clear, margins not clear, CEA now .8, more chemo and possible radiation, outlook looks good, staying positive!!

zephyr
Posts: 108
Joined: Thu Aug 18, 2016 7:31 am

Re: Feeling really sad and in need of support

Postby zephyr » Sat May 26, 2018 12:07 pm

Several months ago I had some physical therapy for the neuropathy and it helped me. It didn't get rid of it completely but it made a big difference. I learned that stimulating the nerves regularly with different textures helps the nerves bounce back. I would spend a few minutes every day plunging my hands into a bucket of (uncooked) rice and squishing rice between/around my fingers (like kneading dough), rolling my fingers over an Ace bandage wrapped in velcro, brushing my hands with a soft surgical brush - that kind of thing. Repeat with feet and toes.
Oct-2009 Stage I CC
Jun-2016 Stage 3 (T3 N1c)
Jun-2016 Surgery
Jul-2016 PET: Probable Stage 4 with inoperable lung mets
Aug-2016 Folfox
Jan-2017 Dropped oxaliplatin, continuing with 5FU, added Avastin
Aug-2017 Dropped Avastin, continuing with 5FU
Dec-2017 Chemo stopped working, lung mets growing but CEA stable, considering other treatment options
Jan-2018 Begin Folfiri & Cyramza (ramucirumab); also receiving Vitamin C & Quercetin by IV every week
Jun-2018 Taking a chemo break; preparing for surgery

VeggieLvr
Posts: 53
Joined: Fri Mar 09, 2018 3:02 pm
Location: NY

Re: Feeling really sad and in need of support

Postby VeggieLvr » Sat May 26, 2018 12:29 pm

Hi lakeswim, I'm sorry you're familiar with the awfulness of the claw hands! It is quite bizarre and scary, I agree - I hate that feeling of not being in full control and struggling to do things like use my phone! My local onc didn't seem concerned about the claw hands when I mentioned it honestly, although I did have a tough time explaining it to her...I am going to mention it to my primary doctor when I see her next (I now plan to give her detailed account of everything I've been feeling!). I'm going to mention the potassium thing to her as well and see what she says.

You're right that I started chemo after surgery (about a month after). I haven't been posting much as I've been trying to "forget" about cancer sometimes, and have been lurking moreso, but this forum is so supportive that I want to participate more. Good luck to you as well!
F, 42, Stage IV CC
2/23/18 - colonoscopy/virtual colonoscopy, diagnosed CC
3/6/18 - left hemicolectomy, 12" removed, clear margins. Multiple mets to lymph nodes (removed), omentum & liver, 1 possible lung met
4/6/18 - port install
4/9/18 - Folfox (Oxaliplatin/Leucovorin/5FU) 4 rounds
6/19/18 - liver resection, HAI pump install
8/30/18 - Folfiri (Irinotecan/Leucovorin/5FU)

margiej
Posts: 33
Joined: Sat Apr 14, 2018 8:46 am

Re: Feeling really sad and in need of support

Postby margiej » Sat May 26, 2018 12:37 pm

zephyr wrote:Several months ago I had some physical therapy for the neuropathy and it helped me. It didn't get rid of it completely but it made a big difference. I learned that stimulating the nerves regularly with different textures helps the nerves bounce back. I would spend a few minutes every day plunging my hands into a bucket of (uncooked) rice and squishing rice between/around my fingers (like kneading dough), rolling my fingers over an Ace bandage wrapped in velcro, brushing my hands with a soft surgical brush - that kind of thing. Repeat with feet and toes.


I really appreciate this information. I hadn't really found anything good on the internet ...I massage my feet and do stretches, etc.,but I like these specific suggestions. Thank you so much.
Margie
Dx CC 12/2015, age 57 at Dx
Stage IIIb: T3N1b
Adenocarcinoma, sigmoid colon, 2.5 cm - low grade, moderately differentiated
3/6 positive lymph nodes
laparoscopic colectomy 1/20/2016
Capox started 3/4/16 - Six rounds
CT-suspicious lymph 2/22/16
PET scan 2/24/16 clear
CT 6/8/16 clear
CT 10/3/17 clear
CEA 12/17 1.7
5/16 3.8
7/16 1.9
3/17 1.3
10/17 1.2
4/18 1.6
NED

VeggieLvr
Posts: 53
Joined: Fri Mar 09, 2018 3:02 pm
Location: NY

Re: Feeling really sad and in need of support

Postby VeggieLvr » Sat May 26, 2018 12:41 pm

lovelife789, thank you so much for sharing your story and for your words of encouragement and support! You've been through a lot and I'm so inspired by your strength and motivation. So much of what you say resonates with me, especially about feeling like you been transformed from a"normal" person into a "patient" and how it affects your identity and your everyday routine, on top of all the awful side effects of treatment. You describe it perfectly. I also relate to hating my port at this stage and feel like if I get to NED I want it out immediately! I've had it for almost two months and it's still uncomfortable, it hurts a bit too (pinches and little stabby pains), I told them this at my last treatment but they said it looks and acts perfectly. I'm also just a squeamish person by nature so having a foreign object feels so weird and alien - although I do admit it's much better for treatments than finding a vein each time.

lovelife789 wrote:
It takes time, give yourself time, to get used to the routine of doctor's appointment, add something that gives you a sense of satisfaction in your daily life helps (for me, I did puzzle and for every piece I finished I felt more confident chemo brain hasn't got to me...), rant on forum here, have your family let you help with some housework (folding some clean laundry), on the bad days weep all you want but do a self talk (i.e. Ok I let you weep for 10 mins, but give me 10 mins of positivity so your body chemistry can work in your favour sth like that) and let out your frustration all help a little bit.


I really like that idea of setting a time limit on being upset and sad and then giving myself a pep talk. That's wonderful that the Chinese stretching helped your neuropathy and that it's gone now! I'm going to look into it for sure. Definitely gives me hope to hear things like this and I'm so glad it worked for you!
F, 42, Stage IV CC
2/23/18 - colonoscopy/virtual colonoscopy, diagnosed CC
3/6/18 - left hemicolectomy, 12" removed, clear margins. Multiple mets to lymph nodes (removed), omentum & liver, 1 possible lung met
4/6/18 - port install
4/9/18 - Folfox (Oxaliplatin/Leucovorin/5FU) 4 rounds
6/19/18 - liver resection, HAI pump install
8/30/18 - Folfiri (Irinotecan/Leucovorin/5FU)

VeggieLvr
Posts: 53
Joined: Fri Mar 09, 2018 3:02 pm
Location: NY

Re: Feeling really sad and in need of support

Postby VeggieLvr » Sat May 26, 2018 12:43 pm

lakeswim wrote:AND I am curious about the first bite thing. Mine seems bad after just this first round. So, it gets worse and worse? How did you eat? I start to dread it. I feel for you if yours was particularly bad.

Lastly, my infusion nurse and my homecare nurse both told me that the experience I have this week (after my first FOLFOX infusion) will be how it will be for all the rounds. But everyone here says it gets worse! Who to believe? (I believe the patients!)

Thanks for your post.


lakeswim I've been handling first bite by taking one small mouthful and chewing it really, really slowly, sometimes just letting it sit for a minute, on first one side of the mouth and then the other. This seems to help with the initial "shock" feeling so I can then proceed to eat normally after.

My nurses have told me that symptoms are cumulative, which is what I read here as well. I am keeping a log and noticed they are increasing a bit with each round, although the fasting the last two rounds helped a lot - in fact my symptoms during my first fasting round (round 3) were less severe than during my very first treatment (and substantially less severe than my round 2 treatment where I also wasn't fasting).
F, 42, Stage IV CC
2/23/18 - colonoscopy/virtual colonoscopy, diagnosed CC
3/6/18 - left hemicolectomy, 12" removed, clear margins. Multiple mets to lymph nodes (removed), omentum & liver, 1 possible lung met
4/6/18 - port install
4/9/18 - Folfox (Oxaliplatin/Leucovorin/5FU) 4 rounds
6/19/18 - liver resection, HAI pump install
8/30/18 - Folfiri (Irinotecan/Leucovorin/5FU)

VeggieLvr
Posts: 53
Joined: Fri Mar 09, 2018 3:02 pm
Location: NY

Re: Feeling really sad and in need of support

Postby VeggieLvr » Sat May 26, 2018 12:59 pm

ANDRETEXAS wrote:VeggieLvr: I walked two miles a day (even with the pump by my side :wink: ) for the first six rounds or so. Then maybe 3-4 days a week for rounds 7-12. I was on a Tuesday hook-up, Thursday off schedule (and then 11 days free). I know one day in the latter rounds I was in bed 15 hours one day. So you will get more tired. Even today, if I see a sofa - I can lie down and be out in less than 5 minutes. I guess a good side effect of chemo is that I can go to sleep within five minutes of going back to bed. lol I did have trouble buttoning my shirt and putting on cuff links, but that went away over time. I can do all of that splendidly now. The neuropathy in my feet was exacerbated by my Type 2 diabetes, but that too has subsided immensely. I still walk 2-3 miles a day without any pain. Although I did not take any time off during my treatment, I don't see why you could not take a week off here and there with your doctor's approval. I have read that you do not have to take 12 rounds of FOLFOX, but with the help of my doctor and our discussions about my side effects, we decided to move forward with 12 with the oxi, That was our decision. But remember, each person is different and reacts to drugs differently. You know your body better than anyone. And again, stay positive!


ANDRETEXAS thank you so much for your reply. I am super impressed that you walked with the pump! I honestly don't think I could manage that!

I'm glad to hear that you still walk and have no issues, and that your neuropathy has subsided a lot. I will do my best to stay positive and hearing about your experience definitely helps! :)
F, 42, Stage IV CC
2/23/18 - colonoscopy/virtual colonoscopy, diagnosed CC
3/6/18 - left hemicolectomy, 12" removed, clear margins. Multiple mets to lymph nodes (removed), omentum & liver, 1 possible lung met
4/6/18 - port install
4/9/18 - Folfox (Oxaliplatin/Leucovorin/5FU) 4 rounds
6/19/18 - liver resection, HAI pump install
8/30/18 - Folfiri (Irinotecan/Leucovorin/5FU)

VeggieLvr
Posts: 53
Joined: Fri Mar 09, 2018 3:02 pm
Location: NY

Re: Feeling really sad and in need of support

Postby VeggieLvr » Sat May 26, 2018 1:05 pm

Rikimaroo wrote:VeggieLvr,

Just like you I am going through the same things. Nueropathy in hands and feet, not severe but annoying at times. Numbness mostly. I actually did Chemo Folfox dec 2017 to feb 2018, first six rounds. Then 3 months off for surgery etc...Then have to do another six rounds because of some concerning pathology results and to be safe, stage 4.

This 2nd time around I think it is tougher. I had my first round on 5/23 infusion oxi/leuco then pump home with me. The pump is annoying with that whirring noise and just having it hook up. Makes it hard to sleep. The Oxi is devastatingly stressful. Cold sensitivity like you even to room temp liquids. This time around nausea peeked its ugly face, even though I have not thrown up the urge or feeling arises, I took a zofran this morning and it helped.

Typing right now feels weird because of neuropathy in my fingers. I hope this buries any residual cancer and I am done with it. Keep up the fight and stay strong, I know its hard I am fighting alongside with you. We have little children to think about and want to know we did everything in our power to fight this and make it to NedVille. I am NED right now. This is all preventative.

PS: Throat locking up feeling is so annoying and so is first bite syndrome, but that can be handled if you slowly put food and chew slow...


Riki


Rikimaroo thank you for your reply. I've read about the whirring noise with the pump, the type I have is silent but I can definitely see how that would be annoying. I completely agree about Oxi being devastatingly stressful, that's the perfect way to describe it and exactly how I feel. I'm sorry you're dealing with the nasty symptoms too.

Thank you for your words of encouragement. All this support helps so much and I am already feeling more positive. I will continue fighting alongside you!
F, 42, Stage IV CC
2/23/18 - colonoscopy/virtual colonoscopy, diagnosed CC
3/6/18 - left hemicolectomy, 12" removed, clear margins. Multiple mets to lymph nodes (removed), omentum & liver, 1 possible lung met
4/6/18 - port install
4/9/18 - Folfox (Oxaliplatin/Leucovorin/5FU) 4 rounds
6/19/18 - liver resection, HAI pump install
8/30/18 - Folfiri (Irinotecan/Leucovorin/5FU)

VeggieLvr
Posts: 53
Joined: Fri Mar 09, 2018 3:02 pm
Location: NY

Re: Feeling really sad and in need of support

Postby VeggieLvr » Sat May 26, 2018 1:07 pm

zephyr wrote:Several months ago I had some physical therapy for the neuropathy and it helped me. It didn't get rid of it completely but it made a big difference. I learned that stimulating the nerves regularly with different textures helps the nerves bounce back. I would spend a few minutes every day plunging my hands into a bucket of (uncooked) rice and squishing rice between/around my fingers (like kneading dough), rolling my fingers over an Ace bandage wrapped in velcro, brushing my hands with a soft surgical brush - that kind of thing. Repeat with feet and toes.


Thank you for this, I will definitely look into it. I used to go to acupuncture before I got cancer but stopped going over a year ago due to my mom's health issues - I think I am going to look into doing that again as well.
F, 42, Stage IV CC
2/23/18 - colonoscopy/virtual colonoscopy, diagnosed CC
3/6/18 - left hemicolectomy, 12" removed, clear margins. Multiple mets to lymph nodes (removed), omentum & liver, 1 possible lung met
4/6/18 - port install
4/9/18 - Folfox (Oxaliplatin/Leucovorin/5FU) 4 rounds
6/19/18 - liver resection, HAI pump install
8/30/18 - Folfiri (Irinotecan/Leucovorin/5FU)

zephyr
Posts: 108
Joined: Thu Aug 18, 2016 7:31 am

Re: Feeling really sad and in need of support

Postby zephyr » Sat May 26, 2018 3:25 pm

VeggieLvr wrote:My nurses have told me that symptoms are cumulative, which is what I read here as well. I am keeping a log and noticed they are increasing a bit with each round, although the fasting the last two rounds helped a lot - in fact my symptoms during my first fasting round (round 3) were less severe than during my very first treatment (and substantially less severe than my round 2 treatment where I also wasn't fasting).


Again, I have no special knowledge or training and am only passing along what I've experienced or been told. Make sure you keep your chemo nurse(s) and doctor updated as to how long the neuropathy lasts after the pump unhook. They will make a determination of whether to discontinue oxi based on that time frame and the severity of your symptoms. If they don't know it's getting worse and don't stop soon enough, the damage could be permanent.
Oct-2009 Stage I CC
Jun-2016 Stage 3 (T3 N1c)
Jun-2016 Surgery
Jul-2016 PET: Probable Stage 4 with inoperable lung mets
Aug-2016 Folfox
Jan-2017 Dropped oxaliplatin, continuing with 5FU, added Avastin
Aug-2017 Dropped Avastin, continuing with 5FU
Dec-2017 Chemo stopped working, lung mets growing but CEA stable, considering other treatment options
Jan-2018 Begin Folfiri & Cyramza (ramucirumab); also receiving Vitamin C & Quercetin by IV every week
Jun-2018 Taking a chemo break; preparing for surgery

VeggieLvr
Posts: 53
Joined: Fri Mar 09, 2018 3:02 pm
Location: NY

Re: Feeling really sad and in need of support

Postby VeggieLvr » Sun May 27, 2018 10:53 am

zephyr wrote:Again, I have no special knowledge or training and am only passing along what I've experienced or been told. Make sure you keep your chemo nurse(s) and doctor updated as to how long the neuropathy lasts after the pump unhook. They will make a determination of whether to discontinue oxi based on that time frame and the severity of your symptoms. If they don't know it's getting worse and don't stop soon enough, the damage could be permanent.


Thank you zephyr, I'm so glad you mention this as I actually haven't been logging the duration of the neuropathy, just the severity, so I will start logging that as well and be sure to let them know at my next appointment. Thank you again!
F, 42, Stage IV CC
2/23/18 - colonoscopy/virtual colonoscopy, diagnosed CC
3/6/18 - left hemicolectomy, 12" removed, clear margins. Multiple mets to lymph nodes (removed), omentum & liver, 1 possible lung met
4/6/18 - port install
4/9/18 - Folfox (Oxaliplatin/Leucovorin/5FU) 4 rounds
6/19/18 - liver resection, HAI pump install
8/30/18 - Folfiri (Irinotecan/Leucovorin/5FU)


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