Feeling really sad and in need of support

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lakeswim
Posts: 85
Joined: Sat Mar 31, 2018 9:37 am

Re: Feeling really sad and in need of support

Postby lakeswim » Sat Jun 09, 2018 1:39 pm

VeggieLvr wrote:
ANDRETEXAS wrote: I also get this weird effect that I call "claw hands" where it's like my fingers are being pulled together and it's like I am fighting against my hands to use them...my thumbs in particular seem to involuntarily pull towards my palms. It comes and goes, it's worse while I'm connected and goes away completely in the couple of days before my next treatment, then comes back as soon as treatment starts. It scares me and I don't like it one bit!



Hey, VeggieLvr. Guess what? Round 2 this past Monday. Claw hands - terrible - all week - into today. So, short note as any hand use initiates the claw hands. I also had calf/achilles/foot cramping. My eyelids didn't work in the wind on the way home from infusion - bizarre! Round 1 was nothing. They said round 2 would be "same" - but round 2 has been a bitch. Exhaustion, fatigue, didn't want to move (and could barely, with leg cramping).....etc. (I can't type the list now with the hand issues.) In bed all week long. Today, I am starting to feel somewhat human again but hand issues not gone completely. Did your claw hands get worse/last longer with each round? (I had my phone off ALL WEEK because using my hands/holding my phone initiated the cramping. Made me feel pretty isolated. Couldn't type/do any work.) Any answers from your doc on hands? (Mine said it's probably low potassium from eating less - and encouraged Gatorade - but it started right after infusion and I ate normally until after infusion, which is when I eat less. So, I blame Ox. And I am not interested in warm gatorade. It's hard enough to drink when it's got to be a specific temp.) Hope you are feeling better? I will need to scroll posts in a day or two when my hands aren't threatening.
49 - F
RC - dgns March '18 (colonoscopy aftr 6 mos blood in stool)
Adenocarcinoma
10-11 cm from anal verge
T4N0M0
Stage 2
Started FOLFOX May '18 (8 rounds total chemo - then 6 wks chemo/rad - then surgery)

NHMike
Posts: 1674
Joined: Fri Jul 21, 2017 3:43 am

Re: Feeling really sad and in need of support

Postby NHMike » Sat Jun 09, 2018 1:49 pm

I've had the claw hands but it kind of felt like arthritis where the joints in your fingers are stiff. For me, it's caused by the Xeloda and it's picked up in my fingers and toes about a week into the cycle. I had a one week break after cycle 6 and one of the reasons was that I was worried that the arthritis stiffness was permanent because it was still there through the whole cycle. When stuff doesn't go away after a full cycle then it becomes worrisome. It might eventually go away but it going away on the rest days provides some confidence that it won't be permanent.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 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; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 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) 12/17-6/18
7/18: Reversal, Port Removal

VeggieLvr
Posts: 58
Joined: Fri Mar 09, 2018 3:02 pm
Location: NY

Re: Feeling really sad and in need of support

Postby VeggieLvr » Tue Jun 12, 2018 11:28 am

lakeswim wrote:Hey, VeggieLvr. Guess what? Round 2 this past Monday. Claw hands - terrible - all week - into today. So, short note as any hand use initiates the claw hands. I also had calf/achilles/foot cramping. My eyelids didn't work in the wind on the way home from infusion - bizarre! Round 1 was nothing. They said round 2 would be "same" - but round 2 has been a bitch. Exhaustion, fatigue, didn't want to move (and could barely, with leg cramping).....etc. (I can't type the list now with the hand issues.) In bed all week long. Today, I am starting to feel somewhat human again but hand issues not gone completely. Did your claw hands get worse/last longer with each round? (I had my phone off ALL WEEK because using my hands/holding my phone initiated the cramping. Made me feel pretty isolated. Couldn't type/do any work.) Any answers from your doc on hands? (Mine said it's probably low potassium from eating less - and encouraged Gatorade - but it started right after infusion and I ate normally until after infusion, which is when I eat less. So, I blame Ox. And I am not interested in warm gatorade. It's hard enough to drink when it's got to be a specific temp.) Hope you are feeling better? I will need to scroll posts in a day or two when my hands aren't threatening.


Hi lakeswim, I found round 2 to be more difficult than round 1 also, by far. I then started my fasting routine and rounds 3 and 4 were much better (though still no fun!).

I think the duration of the claw hands has been about the same for all my treatments. My doctors have no recommendations and seem more concerned about the neuropathy to be honest. I can tell you that right now I haven't had chemo in 2 weeks (having surgery soon) and the claw hands are totally gone, so that makes me hopeful it's not a permanent side effect.

I am feeling better at the moment, thank you! Although anxious about upcoming surgery. I hope you are feeling better now as well and that the claw hands have subsided!
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)

lakeswim
Posts: 85
Joined: Sat Mar 31, 2018 9:37 am

Re: Feeling really sad and in need of support

Postby lakeswim » Tue Jun 12, 2018 12:42 pm

VeggieLvr wrote:
lakeswim wrote: Although anxious about upcoming surgery. I hope you are feeling better now as well and that the claw hands have subsided!


VeggieLvr - Did you have 4 rounds total? I can't see having this claw hands/leg cramps/other misery for 6 more total rounds. Last week was just really the worst - but here's where I learn why cancer isn't some kind of picnic. Also, not sure how you manage fasting. I've read the research and considered it, but I actually think I need to eat MORE the day before my infusion and eating a little something actually makes me feel better M-W of infusion week (I don't eat much - but still - I don't think I'd do well fasting and I admire you for trying it.) Anyway, thank you for your support and I wish you the best on your surgery. Plz keep us posted.
49 - F
RC - dgns March '18 (colonoscopy aftr 6 mos blood in stool)
Adenocarcinoma
10-11 cm from anal verge
T4N0M0
Stage 2
Started FOLFOX May '18 (8 rounds total chemo - then 6 wks chemo/rad - then surgery)

User avatar
kellywin
Posts: 484
Joined: Wed Jan 23, 2013 4:46 pm
Location: Northern CA

Re: Feeling really sad and in need of support

Postby kellywin » Tue Jun 12, 2018 1:56 pm

Hi VeggieLvr,

Please don't ever feel bad about posting a topic that is sad or not upbeat. There's nothing happy or fantastic about a cancer diagnosis or treatment. It's sucks. All of it. This is such a hard time. I echo some of the other's comments about switching to Xeloda instead of the pump, you can do a 3 week schedule (Infusion + Xeloda, 2 weeks Xeloda only, 1 week off). This schedule gives you more time in between to feel better (better being a relative term). Not sure how many rounds you have to do, but maybe a consideration to discuss with your doctors. I still feel that horrible dread/nausea feeling anytime I go to my Oncologists office and it's been 5 years. As others have said, make sure you give your doctors very detailed descriptions about your side effects so that they can determine if they need to make any adjustments. My last round was cancelled for this very reason. Also, for me, each round was different, some I felt better than others, some I felt worse.

As far as side effects:

  • Jaw/first bite - mostly happened the first day, never got worse
  • Claw hand - this sucked and made it difficult to drive home from the infusions, but I did it anyway. Personally, I didn't want anyone there with me. It was too personal, too invasive to have people sitting there watching me get poisoned. Just my personal preference. But it subsided after a couple of days or so. I don't remember it lasting too long or worsening.
  • Neuropothy - the neuropothy I felt during chemo isn't (at least for me) the same as what I experienced after chemo. It peaked a couple of months after my last infusion. It did subside some, but I got on Neurontin/Gabapentin, which made a huge difference. I have issues still in my feet, tingling/"buzzing" feeling and pain, but not as bad as it was before. I've learned it's the best it's going to get.
  • Muscle twitching - drove me crazy, my lip would twitch, legs, arms, everywhere. Some infusions more than others. I did acupuncture after a couple of rounds and it may have helped with that.
  • Appetite - everything tasted like garbage, even water. I did find that some bottled water was more palatable than others, so maybe try a few different kinds. I have no idea how you fast, I could never do that. Somehow, I could drink a cool-ish beer :twisted: , but nothing else.
  • Drugs - Xanax, I'm not sure I would have made it without it. I took Norco as well, it helped through the chemo. Never tried marijuana, but probably should have. Being an Executive at a Bank, just couldn't bring myself to do it, especially since my specialty is monitoring for Money Laundering and other financial crimes.

Wishing you the best throughout this.

Kelly
Kelly, mom 13 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
7/2015 Clear colonoscopy!
4/2018 Clear CT!

NHMike
Posts: 1674
Joined: Fri Jul 21, 2017 3:43 am

Re: Feeling really sad and in need of support

Postby NHMike » Tue Jun 12, 2018 8:00 pm

"It's sucks. All of it." - for me it got progressively harder. Surgery was harder than chemo + radiation, and then neo-adjuvant was a lot tougher than surgery. That's why the doctors don't tell you how rough it will be as they may scare people off (I would guess that they actually do).
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 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; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 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) 12/17-6/18
7/18: Reversal, Port Removal

VeggieLvr
Posts: 58
Joined: Fri Mar 09, 2018 3:02 pm
Location: NY

Re: Feeling really sad and in need of support

Postby VeggieLvr » Tue Jun 12, 2018 9:29 pm

lakeswim wrote:VeggieLvr - Did you have 4 rounds total? I can't see having this claw hands/leg cramps/other misery for 6 more total rounds. Last week was just really the worst - but here's where I learn why cancer isn't some kind of picnic. Also, not sure how you manage fasting. I've read the research and considered it, but I actually think I need to eat MORE the day before my infusion and eating a little something actually makes me feel better M-W of infusion week (I don't eat much - but still - I don't think I'd do well fasting and I admire you for trying it.) Anyway, thank you for your support and I wish you the best on your surgery. Plz keep us posted.


Yes I've had four rounds so far. Was going into my fifth today when they told me I'll be having surgery instead. I get the leg cramps too, and I hear you about not wanting to deal with it, the claw hands and the other side effects for more rounds. It's very tough, that's for sure. I would definitely tell you doctor about all your symptoms before your next treatment. I also just started acupuncture and am hoping that will help with side effects - I used to go for other reasons before I was diagnosed and I did find it helpful. Perhaps that is something that may benefit you as well.

The fasting isn't too bad honestly - the 48 hour pre-fast before infusion is the hardest part for me, but once treatment starts my appetite is completely gone anyway. I figured I'd try it for one round and see how I fared, and the results were so substantial I'm going to continue all treatments this way. I also used to intermittently fast before I got diagnosed, so I guess I am kind of used to it for that reason too.

Thank you for the well wishes on my surgery. :) I will post updates for sure.
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: 58
Joined: Fri Mar 09, 2018 3:02 pm
Location: NY

Re: Feeling really sad and in need of support

Postby VeggieLvr » Tue Jun 12, 2018 9:43 pm

kellywin wrote:Hi VeggieLvr,

Please don't ever feel bad about posting a topic that is sad or not upbeat. There's nothing happy or fantastic about a cancer diagnosis or treatment. It's sucks. All of it. This is such a hard time. I echo some of the other's comments about switching to Xeloda instead of the pump, you can do a 3 week schedule (Infusion + Xeloda, 2 weeks Xeloda only, 1 week off). This schedule gives you more time in between to feel better (better being a relative term). Not sure how many rounds you have to do, but maybe a consideration to discuss with your doctors. I still feel that horrible dread/nausea feeling anytime I go to my Oncologists office and it's been 5 years. As others have said, make sure you give your doctors very detailed descriptions about your side effects so that they can determine if they need to make any adjustments. My last round was cancelled for this very reason. Also, for me, each round was different, some I felt better than others, some I felt worse.


Hi kellywin, thank you for your reply and well wishes. Cancer sucks for sure. It's so unfair that we and our families have to go through this terrible disease.

I will speak to them about Xeloda. That sounds much more appealing to me than my current biweekly schedule. I saw my doctors yesterday and didn't hold back on discussing my side effects in detail - I was meant to have my fifth round but it turns out I am having surgery next week instead. So trying to mentally prepare for that now. I left the office relieved I didn't need to do chemo, yet also nervous about another surgery!

kellywin wrote:As far as side effects:

  • Jaw/first bite - mostly happened the first day, never got worse
  • Claw hand - this sucked and made it difficult to drive home from the infusions, but I did it anyway. Personally, I didn't want anyone there with me. It was too personal, too invasive to have people sitting there watching me get poisoned. Just my personal preference. But it subsided after a couple of days or so. I don't remember it lasting too long or worsening.
  • Neuropothy - the neuropothy I felt during chemo isn't (at least for me) the same as what I experienced after chemo. It peaked a couple of months after my last infusion. It did subside some, but I got on Neurontin/Gabapentin, which made a huge difference. I have issues still in my feet, tingling/"buzzing" feeling and pain, but not as bad as it was before. I've learned it's the best it's going to get.
  • Muscle twitching - drove me crazy, my lip would twitch, legs, arms, everywhere. Some infusions more than others. I did acupuncture after a couple of rounds and it may have helped with that.
  • Appetite - everything tasted like garbage, even water. I did find that some bottled water was more palatable than others, so maybe try a few different kinds. I have no idea how you fast, I could never do that. Somehow, I could drink a cool-ish beer :twisted: , but nothing else.
  • Drugs - Xanax, I'm not sure I would have made it without it. I took Norco as well, it helped through the chemo. Never tried marijuana, but probably should have. Being an Executive at a Bank, just couldn't bring myself to do it, especially since my specialty is monitoring for Money Laundering and other financial crimes.

Wishing you the best throughout this.

Kelly


Thank you for sharing your experience with the side effects. I'm glad to hear the claw hand subsided - that's one of the scariest side effects to me. I have noticed the muscle twitching too - I was going to ask my doctor if a magnesium supplement might help but totally forgot to. I'm with you on everything tasting terrible - I have an awful taste in my mouth basically the whole week of treatment which is just the worst. I can't stand it! I also agree about the xanax - I take that as well and it helps me sleep through some of the roughest days.

Wishing you the best as well, and thank you again for sharing your insight.
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: 58
Joined: Fri Mar 09, 2018 3:02 pm
Location: NY

Re: Feeling really sad and in need of support

Postby VeggieLvr » Tue Jun 12, 2018 9:52 pm

NHMike wrote:"It's sucks. All of it." - for me it got progressively harder. Surgery was harder than chemo + radiation, and then neo-adjuvant was a lot tougher than surgery. That's why the doctors don't tell you how rough it will be as they may scare people off (I would guess that they actually do).


NHMike it does suck, I agree. Cancer is the worst and I hate that we all have to go through this. I'm sorry that it's gotten harder for you as it goes on. I am anticipating it to be the same for me as well. It's so hard to stay strong sometimes, but we have to. I sometimes used to say "everything is temporary", and now my husband repeats this back to me when I'm having a rough time.

I have surgery scheduled for next week now so I'm trying to mentally prepare for that, while also doing my best to enjoy this week treatment free. I do enjoy the time when I'm feeling well, but I always dread the appointments!
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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