Black

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cinder
Posts: 1
Joined: Tue Jan 16, 2018 10:25 pm

Black

Postby cinder » Sat Feb 17, 2018 12:19 am

This is my first post here, though I’ve been a lurker for several months since my diagnosis.
I have been having horrible side effects from FOLFOX. I just finished my third cycle. My Oxaliplatin dose was reduced which helped with the sever fatigue I had been experiencing. Fatigue is better, but I still have crippling depression with each session. I have been on anti-depressants most of my life (on them now), and am familiar with the blues. I start getting irritability and tired towards the end of the chemo session, and then an overwhelming depression sets in and lasts for 4-5 days. I feel too tired to get out of bed, and there feels like nothing tonged out of bed for. Nothing seems like it could give me joy or make life worth living. TV and movies become uninteresting. My awake hours are spent mindlessly scrolling the internet. It feels like the walls are closing in. Miserable.

I’m thinking of stopping my chemo. I can’t imagine 5 more months of this. Can’t do marijuana/opiates because of my job. Don’t want to die, but can’t live like this. I don’t know what to do.
Help
DX: Age 35
Signet Ring Cell Carcinoma of Ascending Colon
Stage IIIC, T4a, N2b
10/2017- Emergency Hemicolectomy
12/2017- Septic shock (intra-abdominal abscess)
1/2018- Started FOLFOX

User avatar
CRguy
Posts: 9675
Joined: Sun Feb 10, 2008 6:00 pm

Re: Black

Postby CRguy » Sat Feb 17, 2018 1:33 am

Welcome to the best forum, nobody wants to have to join.

Sounds like you are in a dark (black) place and though we will ALL try to help as best we can here .....
you may need to consider / should try professional support with someone in real life = therapist/counsellor etc.
Many of us have, myself included.

Do not discount the effects of the medications on your mind / body / spirit.
The chemo is one thing, and reduced doses or other changes are always on the table ... it IS your life ! ....
BUTT some of the other drugs, like steroids ( decadron/dexamethasone ) used to prevent allergic reactions and nausea,
can have massive effects on us.
The "situation" you describe
I start getting irritability and tired towards the end of the chemo session, and then an overwhelming depression sets in and lasts for 4-5 days.
could also be a major side effect of the steroids.

Please check with your docs and see if you need all the steroids or could reduce those doses as well.
I had no problems with nausea so my docs reduced my steroid dose to minimal, on just infusion day and nothing before or after.
It helped me a great deal and I was able to continue chemo for 12 cycles, along with having oxaliplatin dose reductions.

This IS your life and ultimately you need to figure out what you can handle,
BUTT ... you do need to tell your docs what is going on and keep bugging them until you are on a plan which works for YOU.

We are all here to support you, so please keep us in the loop and ask any / all questions you need to
and don't be afraid to rant or vent on forum
We have all been there, and are here for you.

Harmony on the journey
CRguy
Caregiver x 3
Stage IV A rectal cancer/lung met
11 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

michelle c
Posts: 1866
Joined: Wed Dec 02, 2009 3:58 am

Re: Black

Postby michelle c » Sat Feb 17, 2018 8:31 am

I hated chemo...loathed it. I was super anxious throughout the infusion and was very ill...unable to take my head off the pillow ill for the first 3-4 days. I couldn't sleep due to the steroids and didn't have an iPad or smart phone to distract me. TV or movies didn't interest me either. Friends and family would visit but I found it hard to listen to them. I was in a dark place during my chemo. I didn't want to go out. Couldn't seem to enjoy anything. My life just seemed to be focused around my chemo. However, when I did go out, on my off chemo weeks I found that it was good for me. I didn't want to go but I found that doing simple "normal" things was the best thing for me. I felt like a normal person instead of a cancer patient. Exercise made me feel psychologically better too. I didn't feel like exercising at all but even dancing around the room to a favorite song did wonders. It sounds silly but it worked. Do little and simple things and you will feel better, you will. Going out for a coffee with a friend or a walk around your favourite park will help, even though you probably don't feel like it. I thoroughly recommend it for your mental health. It made me feel "normal" after feeling so lonely, lost, anxious and depressed. Best wishes to you. This will be one of the hardest things you'll ever have to go through. Hang in there...things will get better.
25 May 09 Dx with CC (sigmoid colon) 2 days after my 44th b'day
CEA prior to surgery 4.7
3 Jun 09 LAR - Stage III 3/10 lymph nodes
6 Jul - 10 Dec 09 12 cycles FOLFIRI
Genetic testing - inconclusive for Lynch
Jul 12 port removed & hernia repair

NHMike
Posts: 1838
Joined: Fri Jul 21, 2017 3:43 am

Re: Black

Postby NHMike » Sat Feb 17, 2018 9:45 am

I am on my third round and I feel like crap the first week. Today is the tenth day since infusion and I'm doing better but still have the side-effects. This morning I woke up early and went to the gym (the real gym, not the office gym). I haven't been to the gym in several weeks (maybe even two months). Walked about 1.25 miles and worked out on the weight machines. I was pretty tired after an hour workout and I'm still pretty tired (sipping a cup of coffee) but I know that I have to do this to keep going. Sometimes I feel awful but still go for a walk. I am working my way back to running but those infusions knock me back down. I have thought a lot about quitting chemo or going only 6 rounds instead of 8. I haven't decided on what I'm going to do.

I'm Manic which is the opposite of depression. I do understand depression to some degree and I don't think that anyone that hasn't had it truly understands it. I have dealt with family members with severe mental health problems and I'll just say that it's an incredible amount of work and a ton of pain for the people that have it. I do think that your counselors could best advise you. Perhaps your hospital has someone that deals with Mental Health issues along with oncology? I think that Dana Farber Cancer Institute has Psychologists on staff to deal with people with cancer and depression and maybe your hospital has someone like this.

I think that we all understand the dark place stuff here, as we've been there. Likely not as dark or deep as what you're experiencing but tough stuff nonetheless. Lots of people to talk to here if you want to chat about things of course.
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

Aqx99
Posts: 403
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: Black

Postby Aqx99 » Sat Feb 17, 2018 11:24 am

I know exactly how you feel. I was spiraling downward. With the help of my nurse navigator, I was put in contact with the oncology counselor at my cancer center. She has been helping me. She also set me up with a psychiatric nurse practitioner for medication. You may need to have a dose change on your medication, or even try a different one. Cancer takes a major emotional toll on you anyway, so adding it to what you were already dealing with can be unbearable. I urge you to speak with your medical team about these thoughts you have been having. They can help you.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Dx, Age 39
2/21/17 CEA 0.9
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR w/temp loop ileostomy, ovaries & fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Dx w/ovarian cancer
9/6/17 CA 125 11.1
11/27/17 CEA 2.6
12/5/17 CT NED
12/13/17 CEA 2.9
1/11/18 CA 125 8.6
1/23/18 Reversal
3/21/18 CT enlarged thymus
4/6/18 PET NED
7/10/18 CT NED
7/11/18 CEA 2.6
9/18 Bilateral Prophylactic Mastectomy

MissMolly
Posts: 572
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Black

Postby MissMolly » Sat Feb 17, 2018 1:52 pm

Cinder:
I will second CR Guy to discuss the role and dosing of the corticosteroids that you are receiving (likely dexamethasone) as part of your chemotherapy infusions as contributing to your emotional darkness.

I have primary adrenal failure (Addison’s disease) and am dependent on exogenous corticosteroids for life. Most people have little awareness of the endocrine system and the potent role of hormones in the regulation of the body’s organs and body systems. Hormones are essentially chemical messengers that give instruction as to how organs function and the interplay of the body’s physiological processes. Hormones effect every aspect of our health - mood and emotions; cognition and higher level reasoning; digestion and metabolism; muscular strength; heart rate and blood pressure; and more.

Corticosteroids (which includes the family of prednisone, hydrocortisone, dexamethasone) can lead to a type of “steroid rage” with higher level dosing. Agitation, flashes of anger, excessive energy - as though being on a caffeine binge. Low corticosteroid levels can lead to apathy, darkened emotional mood, withdrawal, sensitivity to lights and sounds.

Chemotherapy infusions often include a hefty dose of dexamethasone to quell nausea and secondary distressing symptoms. The half-life of dexamethasone is quite long, meaning that it remains in the system unleashing it’s effects over time. As the steroid levels fall, a sort of troughing effect occurs with low steroid levels which may be complicated by a suppression of the body’s natural production of cortisol by the adrenal glands. Low cortisol symptoms can then be manifest (muscle and joint pain, generalized; profound fatigue not relieved by rest; nausea and diarrhea, low appetite; low blood pressure, dizzy; headaches; sensitivity to lights and sounds).

Bottom Line: Do not discount the profound and pervasive effects of corticosteroids that often accompany chemotherapy infusions.
Karen
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

mhf1986
Posts: 158
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: Black

Postby mhf1986 » Sat Feb 17, 2018 2:17 pm

I"m not a nurse, just a caregiver, but I did read that Zofran can also play havoc with depression/moods. DH has chemo on alternate Tuesdays and we've dubbed those following Thursdays "nap day" because he is so sleepy and dark. Usually, I can talk him into the car around lunch after the 5fu pump is out and we'll go grab a salad somewhere. Seems like the sunshine, fresh air, and being out helps. Do you have a friend who can go walking in the sunshine/mall/Walmart with you? Someone reliable who will drag you, coax you out if needed?

M
Caregiver to DH, dx @ 50, mets to liver/lungs, MSS, wild
9/16 CEA 114, blockage, left hemi, perm. colostomy
11/16 port in, FOLFOX + Avastin
6/17 CEA 15, 5FU + A only due to neuropathy
11/17 CEA 38, CAPOX + A
1/18 CAPOX = hi bilirubin/bad hfs, back to FOLFOX + A
5/18 growth; Vectibex + 75% Irinotecan
7/18 CEA 23, shrinkage
10/18 CEA 28, growth of 2 liver tumors/shrinkage of few and lung nodes
11/18 Lonsurf, looking at spheres, proton, trials
11/19/18 Peace

fumaros
Posts: 231
Joined: Sat Jul 02, 2016 10:26 pm
Location: Syracuse, NY
Contact:

Re: Black

Postby fumaros » Tue Feb 20, 2018 9:01 am

Definitely talk with a counselor particularly one who works with cancer patients a lot. Also, you could plan a vacation or a trip somewhere in the middle of chemo, it worked for me. The vacation gave me something short-term and concrete to look forward to. A good vacation away from the cancer reality could also give you fresh strength to finish the haul.
Diagnosed 4/8/16, age 29
Colectomy 4/20/16
Stage III, T4bN1 Tumor 7x6.5x2. Muscinous Adenocarcinoma with SRC features
2/16 lymph nodes
CEA 4/14/16 - 16.8
CEA 6/2/16 - 1.9
CEA 6/17/16 - 0.87, 7/16 - 1.33, 12/16 - 1.14, 4/17 - 0.6, 7/17 - 0.5, 10/17 - 0.9
FOLFOX began 6/24/16 - 11/25/16
10 round FOLFOX, 2 round 5-FU & Leucovorin
MRI & CT 8/16 - NED, CT 12/16 - 10/17 - NED

zephyr
Posts: 142
Joined: Thu Aug 18, 2016 7:31 am

Re: Black

Postby zephyr » Tue Feb 20, 2018 11:13 am

Aqx99 wrote:I know exactly how you feel. I was spiraling downward. With the help of my nurse navigator, I was put in contact with the oncology counselor at my cancer center. She has been helping me. She also set me up with a psychiatric nurse practitioner for medication. You may need to have a dose change on your medication, or even try a different one. Cancer takes a major emotional toll on you anyway, so adding it to what you were already dealing with can be unbearable. I urge you to speak with your medical team about these thoughts you have been having. They can help you.


I've never struggled with the crippling depression you described but I have a bit of experience with family members who were not so lucky and periodically battle with rebalancing meds. Aqx99 makes a good point about dosage -- is it possible that all the physical trauma and meds in your system from the emergency surgery, septic shock and chemo have altered your chemistry in such a way that a modification to the anti-depressants might be needed? Although my depression was a shadow of what you're experiencing, I found myself in a very dark, scary place a few months ago and the oncology counselor and nurse navigator at my cancer center really helped me find my way back.
Nov-2009 Early stage CRC found during routine colonoscopy
2010, 2011, 2014 Follow up colonoscopies, all clear
Jun-2016 CRC found during routine follow up colonoscopy, surgery, Stage 4, KRAS, inoperable lung mets
Aug-2016-May-2018 Folfox, 5FU & Avastin, 5FU, Folfiri & Cyramza
Aug/Sep-2018 YAG laser surgeries (Germany) on both lungs, 11 nodules (9 mets) removed


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