NEW-Need some positivity here.

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DonutHead
Posts: 31
Joined: Tue Oct 03, 2017 6:45 pm
Facebook Username: mark

Re: NEW-Need some positivity here.

Postby DonutHead » Thu Oct 12, 2017 9:27 am

today is a good day because we are all alive, caught it before it killed us, and are fighting the good fight to stay alive and live long. everyone on this earth has their own problems or will have them somewhere in their future. none of us are unlucky any more than the rest, nor are we not as special as the other guy.

my grandfather used to tell me to do everything in moderation and still...here i am. no junk food, no processed food, limited to no red meat, limited alcohol intake, non smoker, healthy weight, consummate exerciser...none of that mattered really...

we are biological machines. our cells live, die, and replicate at an amazingly fast pace. this is how we grow, live, and eventually die. sometimes that process is inhibited, interrupted, corrupted...that’s cancer. even with all if the data collected, all of the studies, trials, outcomes...cancer is still a mystery. even the experts cannot tell you how it happened to you, they can only make their best educated guess based on the available information....

i believe we need to focus instead on our diagnosis and treatment protocols...moved forward. instead of weighing ourselves down with the why question, focus on what we know and the what and how...what do we need to do now and how can we rid ourselves of this shit. yes, i have cried for myself, my family...wondered, feared. but, that is life, this is living...

Today is day two of cycle 1. my first bite syndrome remains, was a bit worse this morning, but i knew what to expect and got through it. drinking warm everything now and coffee still tastes good. after taking my xeloda i felt a bit nauseous, like the onset of a stomach flu, but is subsiding. writing from Starbucks and getting on with it...this is my new reality and i accept it.

life is always a struggle no matter where you are in it. we will all get through this and i am fortunate i have you guys as new friends to help me through this journey. THANK YOU ALL! i look forward to reading your posts...

DH
Male 48 yrs.
09/10/2017: Colonoscopy 2.2x2 cm lesion - Invasive Adenocarcinoma - NOT Genetic
09/13/2017: CT - No Mets - Very slightly enlarged LN
09/19/2017: Chest Xray, CBC, CEA 2.0. normal
09/20/2017: LAP Rectosigmoid - 8' and 25 LNs removed
09/21/2017: Biopsy - 1/25 LN slight molecular invasion
Dx: Stage IIIa - T3 N1 MX
Chemo of 8 cycles Oxaliplatain with 2 weeks of Xeloda (3 week cycle) for 6 months
10/09/2017: PET negative; no molecular activity, no metabolic activity, NED. T3 N1a M0

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Robino1
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Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: NEW-Need some positivity here.

Postby Robino1 » Thu Oct 12, 2017 11:52 am

susie0915 wrote:
Robino1 wrote:For first bite, this is what helps me. Take a bite but do not chew. Move it towards the center and back part of your tongue. Slowly transfer it to the back side. Let it sit there and then transfer to other side. You will still feel first bite but you can slowly get those taste buds woken up with less pain.

For cold drinks, I sometimes just let it sit in my mouth for a bit to warm them up before swallowing.

If you are doing 5FU, you will probably get thrush in your mouth. As soon as you see evidence, talk to your oncologist. She can prescribe Magic Mouthwash. It will help take care of that.

Good luck and you got this!!

I wish I had done chemo after my resection. I may not have been going through this journey now.

Oh well, shoulda, coulda, didn't. All in the past and can't be changed. I am fight the beast and am determined to win. :)


You will win. Don't beat yourself up over not having chemo. Were you even given the choice? I didn't want to do it but my oncologist and husband
persuaded me. I don't know if it made a difference but it did leave some side effects I'm still dealing with and probably will forever. And it wasn't easy
going through it either. I still worry even though I did have chemo. Stay strong and don't think back, move forward. You have such a positive attitude.


Surgeon said he got it all and didn't need chemo. I never went to see an oncologist. It is what it is ;)

Chemo cancelled today due to 2.3 WBC. Got a shot instead. Bright side: I don't have the pump this weekend. :D
At 54 2014 1st colonoscopy colon cancer detected.
Colon resect right ascending
margins clear. No chemo Stage II
2017
Distended abd, pain in intestines.
CT scan shows seeding
Ascites
Lap diag - cancer on the omentum
CEA 217
CEA 219
PET cancer on the omentum, susp activ right abdomen
FOLFOX started 6/17
CEA 202
Not genetic
8/29/17 CT scan showed excellent melting of the tumor. Chemo is working!
Ascites is gone
CEA: 9/30/17 -109; 10/12/17 - 99.1; 11/4/17 - 90.7; 11/30/17 - 70.7
BRAF V600e mutation :(

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susie0915
Posts: 531
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: NEW-Need some positivity here.

Postby susie0915 » Thu Oct 12, 2017 2:01 pm

Robino1 wrote:
susie0915 wrote:
Robino1 wrote:For first bite, this is what helps me. Take a bite but do not chew. Move it towards the center and back part of your tongue. Slowly transfer it to the back side. Let it sit there and then transfer to other side. You will still feel first bite but you can slowly get those taste buds woken up with less pain.

For cold drinks, I sometimes just let it sit in my mouth for a bit to warm them up before swallowing.

If you are doing 5FU, you will probably get thrush in your mouth. As soon as you see evidence, talk to your oncologist. She can prescribe Magic Mouthwash. It will help take care of that.

Good luck and you got this!!

I wish I had done chemo after my resection. I may not have been going through this journey now.

Oh well, shoulda, coulda, didn't. All in the past and can't be changed. I am fight the beast and am determined to win. :)


You will win. Don't beat yourself up over not having chemo. Were you even given the choice? I didn't want to do it but my oncologist and husband
persuaded me. I don't know if it made a difference but it did leave some side effects I'm still dealing with and probably will forever. And it wasn't easy
going through it either. I still worry even though I did have chemo. Stay strong and don't think back, move forward. You have such a positive attitude.


Surgeon said he got it all and didn't need chemo. I never went to see an oncologist. It is what it is ;)

Chemo cancelled today due to 2.3 WBC. Got a shot instead. Bright side: I don't have the pump this weekend. :D


Do they call you ahead of time or did you have to go and be told no go? Hopefully your count comes back up soon. My surgeon told me prior to surgery
that I had such a good response to chemo/radiation may no need either. But, minimal residual cell were seen in area where tumor was. So I wouldn't have had either if it came back showing all was gone. Stay positive you seem to be having good response thus far.
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT
11/17 CEA<.5

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Robino1
Posts: 212
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: NEW-Need some positivity here.

Postby Robino1 » Thu Oct 12, 2017 2:18 pm

I didn't know until the bloodwork came back before the chemo. That's pretty much why they do bloodwork before getting the chemo treatments. Just to make sure everything is ok.

No biggie, hopefully it will be back up in a range that they can resume next week.

Yes, my cancer is responding well to the chemo. Hopefully it will be put into remission. :D
At 54 2014 1st colonoscopy colon cancer detected.
Colon resect right ascending
margins clear. No chemo Stage II
2017
Distended abd, pain in intestines.
CT scan shows seeding
Ascites
Lap diag - cancer on the omentum
CEA 217
CEA 219
PET cancer on the omentum, susp activ right abdomen
FOLFOX started 6/17
CEA 202
Not genetic
8/29/17 CT scan showed excellent melting of the tumor. Chemo is working!
Ascites is gone
CEA: 9/30/17 -109; 10/12/17 - 99.1; 11/4/17 - 90.7; 11/30/17 - 70.7
BRAF V600e mutation :(

teacher2017
Posts: 126
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Thu Oct 12, 2017 6:19 pm

Here's a question for all those with the fanny pack pumping folfox....do you actually hear the machine? Will it keep me up? Do you feel it?
Last edited by teacher2017 on Thu Oct 12, 2017 7:54 pm, edited 1 time in total.
48 year old female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection Sept 22 2017
6.1cm tumor size
chemo -folfox 11/8 started
CEA level- 1.4 11/8
Hoping clean up chemo works!

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Robino1
Posts: 212
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: NEW-Need some positivity here.

Postby Robino1 » Thu Oct 12, 2017 6:23 pm

You can hear it slightly, you won't feel it.

I bury mine under blankets on the night stand at night or it will keep me up. It doesn't make a loud sound, just an annoying one if you don't like noise at all when you sleep. The tube is long enough to do that. You don't need to keep it in bed with you.
At 54 2014 1st colonoscopy colon cancer detected.
Colon resect right ascending
margins clear. No chemo Stage II
2017
Distended abd, pain in intestines.
CT scan shows seeding
Ascites
Lap diag - cancer on the omentum
CEA 217
CEA 219
PET cancer on the omentum, susp activ right abdomen
FOLFOX started 6/17
CEA 202
Not genetic
8/29/17 CT scan showed excellent melting of the tumor. Chemo is working!
Ascites is gone
CEA: 9/30/17 -109; 10/12/17 - 99.1; 11/4/17 - 90.7; 11/30/17 - 70.7
BRAF V600e mutation :(

Aqx99
Posts: 275
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: NEW-Need some positivity here.

Postby Aqx99 » Thu Oct 12, 2017 6:26 pm

Robino1 wrote: Surgeon said he got it all and didn't need chemo. I never went to see an oncologist. It is what it is ;)

Chemo cancelled today due to 2.3 WBC. Got a shot instead. Bright side: I don't have the pump this weekend. :D


That makes me nervous for my next infusion on Monday. When I was in the last time my WBC count was 2.8. My oncologist had me come in a week later to retest and my WBC count was 2.7. My platelets have nosedived as well. They were 94 at my last chemo and 56 at the retest. The one thing they were happy about was that my neutrophils went up from 1.45 to 1.73. I'm hoping everything else has rebounded and I can continue without having to take an extra week off chemo. I just want to get this over with.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
Diagnosed at age 39
2/21/17 Diagnosis
2/21/17 CEA 0.9 ng/mL (Siemens Chemiluminescent Method)
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR with temp loop ileostomy, ovaries and fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Diagnosed with precursor ovarian cancer
9/6/17 CA 125 11.1 U/mL
11/27/17 CEA 2.6 ng/mL (Roche ECLIA Method)
12/5/17 CT showed NED
1/18ish Reversal

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Robino1
Posts: 212
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: NEW-Need some positivity here.

Postby Robino1 » Thu Oct 12, 2017 6:38 pm

My neutrophils were also low. I think that was the deciding factor.
At 54 2014 1st colonoscopy colon cancer detected.
Colon resect right ascending
margins clear. No chemo Stage II
2017
Distended abd, pain in intestines.
CT scan shows seeding
Ascites
Lap diag - cancer on the omentum
CEA 217
CEA 219
PET cancer on the omentum, susp activ right abdomen
FOLFOX started 6/17
CEA 202
Not genetic
8/29/17 CT scan showed excellent melting of the tumor. Chemo is working!
Ascites is gone
CEA: 9/30/17 -109; 10/12/17 - 99.1; 11/4/17 - 90.7; 11/30/17 - 70.7
BRAF V600e mutation :(

teacher2017
Posts: 126
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Fri Oct 13, 2017 2:00 pm

So I went back to the dr to check out this bronchitis- she said lungs are clear and doesn't want me to get an X-ray because I have been ctscanned and xrayed too death. After telling her about the resection surgery and the lymph nodes, she told me that I got a raw deal and she was sorry. "Wow. That's a lot of lymph nodes" she said. I felt like I was already given my death sentence. She even implied that this cough could be a lung issue from the cancer. I'm just sick. I think I need another general doctor. So I have more antibiotics to take and she wants me to take a steroid which I do not want to take because it could prolong chemo. What a day.
48 year old female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection Sept 22 2017
6.1cm tumor size
chemo -folfox 11/8 started
CEA level- 1.4 11/8
Hoping clean up chemo works!

Beckster
Posts: 189
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: NEW-Need some positivity here.

Postby Beckster » Fri Oct 13, 2017 2:22 pm

teacher2017 wrote:So I went back to the dr to check out this bronchitis- she said lungs are clear and doesn't want me to get an X-ray because I have been ctscanned and xrayed too death. After telling her about the resection surgery and the lymph nodes, she told me that I got a raw deal and she was sorry. "Wow. That's a lot of lymph nodes" she said. I felt like I was already given my death sentence. She even implied that this cough could be a lung issue from the cancer. I'm just sick. I think I need another general doctor. So I have more antibiotics to take and she wants me to take a steroid which I do not want to take because it could prolong chemo. What a day.


Really??? She is a specialist in cancer too? I think that she needs a refresher course of how to communicate with patients! I would be looking for a new doctor! Ask your oncologist who he would recommend. That is what I did when I fired my gyno this summer. After I told him what happened, he said "Well, that is why you should have had a colonoscopy when you were 50." I looked at him and said "Maybe if you did your job and test for occult blood, this would have been caught sooner!" He turned really red and did not know what to say. He is done and I asked my oncologist who they would recommend in their system.

One thing that I learned through this journey is that I am done being "nice". If I am pissed off...I let them know!
57/Female
DX:(CC) 10/19/16
11/4/16- Lap right hemi(cecum)
CEA- Pre Op (1.9), Pre Chemo (2.5)
Tumor type: Adenocarcinoma
Tumor size: 3.5 cm x 2.5 x 0.7 cm
Tumor grade: G3 (surgical) G2 (pre-op)
TNM: T3N0M0/IIA
Positive lymph nodes: 0/24
Lymphovascular invasion
Surgical margins: clear
Lynch- Negative
12/27/2016 - Capeox, anaphylactic reaction to oxaliplatin on first infusion-discontinued
1/2/17 to 6/9/17- Xeloda monotherapy
6/26/17- CT scan NED :D
CEA- 6/17- 3.6, 9/17- 2.8
Clear Colonoscopy 10/17 :D

teacher2017
Posts: 126
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Fri Oct 13, 2017 2:56 pm

Well I had my colonoscopy at 48-and according to the world, not supposed to even get one yet! If I waited I'd be in worse shape. You are right. Time to change doctors. I already feel like the grim reaper is at my door I certainly don't need this doctor making me feel worse. There needs to be a class in bedside manner.
48 year old female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection Sept 22 2017
6.1cm tumor size
chemo -folfox 11/8 started
CEA level- 1.4 11/8
Hoping clean up chemo works!

Aqx99
Posts: 275
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: NEW-Need some positivity here.

Postby Aqx99 » Fri Oct 13, 2017 3:15 pm

Wow, I've had nothing but support from my other doctors since my diagnosis. I went to see my primary care physician in July for a 6 month check up and found out that they never told her that I had cancer (my cancer center is in the same medical network as she is). She's the one that found it! She sent me to the gastroenterologist after I told her my symptoms. I was telling her nurse about the treatment I already had and what was to come, then she said she would send the doctor in. It took forever for the doctor to come in, I figure because she was probably reading through my chart. When she came in she had her mouth open and apologized profusely for not knowing about the cancer. She told me that if she had known, she would have been annoying me by checking in with me to see how I was doing. She sent me off with a big hug. My gynecologist was very caring as well. I called to let her know that I would have to put off my annual exam due to my surgery and the fact that my surgeon had accidentally poked a hole in my vagina during surgery and he told me nothing could be in there for three months to let it heal. She asked how I was doing and wished me luck with my treatment. I'll probably be seeing her in December. I am so sorry that you guys have had bad experiences with your doctors. What a horrible bedside manner!
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
Diagnosed at age 39
2/21/17 Diagnosis
2/21/17 CEA 0.9 ng/mL (Siemens Chemiluminescent Method)
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR with temp loop ileostomy, ovaries and fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Diagnosed with precursor ovarian cancer
9/6/17 CA 125 11.1 U/mL
11/27/17 CEA 2.6 ng/mL (Roche ECLIA Method)
12/5/17 CT showed NED
1/18ish Reversal

DonutHead
Posts: 31
Joined: Tue Oct 03, 2017 6:45 pm
Facebook Username: mark

Re: NEW-Need some positivity here.

Postby DonutHead » Fri Oct 13, 2017 6:02 pm

teacher2017 wrote:So I went back to the dr to check out this bronchitis- she said lungs are clear and doesn't want me to get an X-ray because I have been ctscanned and xrayed too death. After telling her about the resection surgery and the lymph nodes, she told me that I got a raw deal and she was sorry. "Wow. That's a lot of lymph nodes" she said. I felt like I was already given my death sentence. She even implied that this cough could be a lung issue from the cancer. I'm just sick. I think I need another general doctor. So I have more antibiotics to take and she wants me to take a steroid which I do not want to take because it could prolong chemo. What a day.


What a day indeed, so sorry that is the care you received. She is certainly not an oncologist or a specialist.....general practitioner. you will be certainly touchy about anything that is said, i find myself reading in to everything and overthinking every word for hidden meaning. you need a different doctor and should make the change immediately. asking your PA at the oncologist or the doctor directly should put you in contact with someone who will be more engaging and concerned about your overall condition. good doctors know other good doctors and they all run in the same circles when it comes to referrals.

you do not have a death sentence and the oncologist did not find anything in your lungs so go with that and remain focused. you caught it and are working towards your cure. put on the blinders and block out all of the negative noise, especially from otherwise clueless people who make outlandish statements like that with no conideration for your mental well-being. Is this doctor in coordination with your oncologist? i think they should all be on the same plan when it comes to your treatment. hang in there.

DH
Male 48 yrs.
09/10/2017: Colonoscopy 2.2x2 cm lesion - Invasive Adenocarcinoma - NOT Genetic
09/13/2017: CT - No Mets - Very slightly enlarged LN
09/19/2017: Chest Xray, CBC, CEA 2.0. normal
09/20/2017: LAP Rectosigmoid - 8' and 25 LNs removed
09/21/2017: Biopsy - 1/25 LN slight molecular invasion
Dx: Stage IIIa - T3 N1 MX
Chemo of 8 cycles Oxaliplatain with 2 weeks of Xeloda (3 week cycle) for 6 months
10/09/2017: PET negative; no molecular activity, no metabolic activity, NED. T3 N1a M0

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susie0915
Posts: 531
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: NEW-Need some positivity here.

Postby susie0915 » Fri Oct 13, 2017 6:15 pm

I agree you need to find a new doctor. And you have not been given a death sentence. Donuthead is correct that you need to tune out negativity and focus on how well so many on this forum have done. I'm sure everyone here can attest to the fact that most treatment programs get derailed but whatever happens is dealt with and then move on with treatments. My bowel blockage set back my chemo six weeks. Stay positive and know that you can do this and you will do this.
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT
11/17 CEA<.5

teacher2017
Posts: 126
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Sat Oct 14, 2017 5:02 am

DonutHead wrote:
teacher2017 wrote:So I went back to the dr to check out this bronchitis- she said lungs are clear and doesn't want me to get an X-ray because I have been ctscanned and xrayed too death. After telling her about the resection surgery and the lymph nodes, she told me that I got a raw deal and she was sorry. "Wow. That's a lot of lymph nodes" she said. I felt like I was already given my death sentence. She even implied that this cough could be a lung issue from the cancer. I'm just sick. I think I need another general doctor. So I have more antibiotics to take and she wants me to take a steroid which I do not want to take because it could prolong chemo. What a day.


What a day indeed, so sorry that is the care you received. She is certainly not an oncologist or a specialist.....general practitioner. you will be certainly touchy about anything that is said, i find myself reading in to everything and overthinking every word for hidden meaning. you need a different doctor and should make the change immediately. asking your PA at the oncologist or the doctor directly should put you in contact with someone who will be more engaging and concerned about your overall condition. good doctors know other good doctors and they all run in the same circles when it comes to referrals.

you do not have a death sentence and the oncologist did not find anything in your lungs so go with that and remain focused. you caught it and are working towards your cure. put on the blinders and block out all of the negative noise, especially from otherwise clueless people who make outlandish statements like that with no conideration for your mental well-being. Is this doctor in coordination with your oncologist? i think they should all be on the same plan when it comes to your treatment. hang in there.

DH


I agree it was ridiculous. Definitely changing. She is not affiliated with the oncologist either so I will ask for a recommendation. Yes, I'm very touchy. I heard the other day "oh wow, you lost weight, you look great." I felt like saying "yeah cancer surgery is responsible." But I didn't. Just going to work on making this bronchitis go away. Can't seem to kick it.
48 year old female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection Sept 22 2017
6.1cm tumor size
chemo -folfox 11/8 started
CEA level- 1.4 11/8
Hoping clean up chemo works!


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