Meningitis

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TrojanGirlie
Posts: 20
Joined: Sun Jan 08, 2017 4:17 pm
Facebook Username: Emily Ochoa

Meningitis

Postby TrojanGirlie » Tue Jun 02, 2020 9:03 pm

Hi,

I dont lost quite often but lurk around the board to get inspired and read advice. My husband has Stage 4 colon cancer and has been on Keytruda and Xeloda combined for the last 3 years. 9 days ago he was complaining of an ear infection, developed a fever of 101 and I took him to an ER. He was discharged same day and given amoxicillin. Next day fever continued to rise, did a virtual visit with an advice nurse so said to take him back to ER. Discharged him same day with the addition of antibiotic ear drops. A few days later his temperature grew to 104 degrees. Primary care advised to take him to the ER. They gave him fluids and released him same day. Two days later he was woozy, mentally confused, fever grew to 105.9 could barely walk. They discharged him same day with IV antibiotics to be administered at home. That was 2 days ago. And today he seizured and was taken by ambulance to the ER. His oncologist suspects meningitis. She has asked that he be admitted to the hospital and they refuse to do that. His oncologist seems just as confused and frustrated that they won't keep him at least overnight until the meningitis results come back. Anyone had experience with meningitis and cancer? How bad is this? Anyone else have difficulty getting admitted to the hospital? My fear is he has meningitis and we won't know for sure for a few days, they aren't treating it and he will get worse. At least at a hospital, if he has a seizure they might be better equipped to help him especially since he can barely walk or talk
31 year old Husband DX Stage 3 rectal cancer - 5/16
Xeloda and Radiation (6 weeks) - 8/16
mets to liver, Stage 4 - 10/16
5FU-Erbitux-Irinotecan - 10/16-4/17
Keytruda and XELOX- 5/17-11/17
Keytruda and Xeloda- 11/17-now
Lynch Syndrome positive and MSI-high

del
Posts: 119
Joined: Thu Mar 03, 2016 11:21 pm
Location: Sydney, Australia

Re: Meningitis

Postby del » Wed Jun 03, 2020 12:43 am

That sounds like downright negligence. Such a high fever and seizure alone should get him admitted for observation. Can your oncologist call the ED and advocate for him? Have you tried going to a different hospital? Is he taking anything to help bring the fever down? I would keep pushing until you are taken seriously.
Male, 33 @ dx, stage 1 RC (T1N0M0 mod. diff. 0/29 LNs)
2016-02 - Cancerous polyp removed during colonscopy, 0.5 mm margin
2016-03 - ULAR & TME surgery, temp ileostomy
2016-04 - DVT, pulmonary embolism
2016-11 - Ileostomy reversal
2018-10 - Another DVT & PE
2021 - 5 years of clean scopes/scans/bloods

jep
Posts: 260
Joined: Sun Jun 11, 2017 7:45 pm
Location: New England, USA

Re: Meningitis

Postby jep » Wed Jun 03, 2020 6:05 am

I'm so sorry that you and your husband are going through this . . . it sounds terrifying . . . I agree with Del, and I can't believe they keep sending him home. If there is another hospital near by, that might be an option. We have 2 hospitals near by, and when my husband was first having symptoms of a blockage (back in 2017), one hospital sent him home (even after seeing some type of blockage on his x-ray) . . . when we eventually made it the other hospital for an emergency surgery, the surgical team was so upset that the other hospital sent him home . . . I wish I had knowledge about meningitis to share, but I'm praying that your husband gets treated and feels much, much better soon.
jep

p.s. did the hospital say why they would not admit your husband?
Stage IV CC 5/16/17
Loc: recto-sig
Type: Adenocarcinoma
Size: 7.4 cm
Grade: G3
TNM: T3N2M1
LNs: 8/20
BL CEA: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps
PET 10/17/18: 3 pos LNs
Irino + Vecti (11/18)
CEA: 1.7 (2/19)
Xel + rad (5/19)
Surgery: 8/21/19 (aborted)
P1 Trial 10/19 - 12/19
Bypass 12/6/19
Folfox + vecti 1/2/19 - 4/3/20
Kid Fail 5/1/20
Folfiri + Avastin 5/20 - 6/20
bypass 6/29/20
Stivarga 7/18/20 -
Home 9/10/20

TrojanGirlie
Posts: 20
Joined: Sun Jan 08, 2017 4:17 pm
Facebook Username: Emily Ochoa

Re: Meningitis

Postby TrojanGirlie » Wed Jun 03, 2020 3:55 pm

Thanks. The argument for why they would not admit him was because they said he would receive the same level of care at home. The oncologist said he should be admitted at least for observation and they told her, "what are we observing?" And she said she listed, that he doesn't have a seizure, that his fever doesn't return, that he doesn't develop mental confusion, etc. She was exhaniging phone calls with the ER department up to 11pm at night and she finally succeeded in convincing them to admit him. So he will be there at least for 2 more days while they wait for the results of the lumbar puncture. He isnt allowed visitors and i havent spoken to him yet, but a doctor called to give me an update that he is fine right now, because he is heavily medicated with antibiotics and anti seizure meds. But they are still concerned because they have not figured out the source of the infection. Other theories are his port is infected or proctitis.

The next closest hospital is 1.5 hours away and we started there when he first was not feeling well because they are better, but with the last few times his fever was a medical emergency so we couldn't make the drive.

Thanks for allowing me to vent and for the advice. I appreciate it.
31 year old Husband DX Stage 3 rectal cancer - 5/16
Xeloda and Radiation (6 weeks) - 8/16
mets to liver, Stage 4 - 10/16
5FU-Erbitux-Irinotecan - 10/16-4/17
Keytruda and XELOX- 5/17-11/17
Keytruda and Xeloda- 11/17-now
Lynch Syndrome positive and MSI-high

del
Posts: 119
Joined: Thu Mar 03, 2016 11:21 pm
Location: Sydney, Australia

Re: Meningitis

Postby del » Thu Jun 04, 2020 6:24 am

Vent away, you have every reason to. But I'm glad to hear your husband was finally admitted and that the doctors said he is doing fine. Hope you can get those test results soon so you have some answers!
Male, 33 @ dx, stage 1 RC (T1N0M0 mod. diff. 0/29 LNs)
2016-02 - Cancerous polyp removed during colonscopy, 0.5 mm margin
2016-03 - ULAR & TME surgery, temp ileostomy
2016-04 - DVT, pulmonary embolism
2016-11 - Ileostomy reversal
2018-10 - Another DVT & PE
2021 - 5 years of clean scopes/scans/bloods

jep
Posts: 260
Joined: Sun Jun 11, 2017 7:45 pm
Location: New England, USA

Re: Meningitis

Postby jep » Thu Jun 04, 2020 7:19 am

I'm so glad he's been admitted, but it's so hard not to be able to be with him . . . have you been able to call the nurses' station to get updates? My husband just spent a week in the hospital and since I couldn't sleep, I would call the nurses' station at 3:00 AM and other crazy times, but they were able to talk and give me updates. I hope they've figured it out . . . it's interesting that you mention an infected port because my husband just had his port removed due to a staph infection that got into his blood stream . . . I'm sure they've tested your husband's blood to rule that out . . . praying for you and your entire family . . . hope today is a better day . . .
jep
Stage IV CC 5/16/17
Loc: recto-sig
Type: Adenocarcinoma
Size: 7.4 cm
Grade: G3
TNM: T3N2M1
LNs: 8/20
BL CEA: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps
PET 10/17/18: 3 pos LNs
Irino + Vecti (11/18)
CEA: 1.7 (2/19)
Xel + rad (5/19)
Surgery: 8/21/19 (aborted)
P1 Trial 10/19 - 12/19
Bypass 12/6/19
Folfox + vecti 1/2/19 - 4/3/20
Kid Fail 5/1/20
Folfiri + Avastin 5/20 - 6/20
bypass 6/29/20
Stivarga 7/18/20 -
Home 9/10/20

boxhill
Posts: 789
Joined: Fri Apr 06, 2018 11:40 am

Re: Meningitis

Postby boxhill » Mon Jun 08, 2020 7:22 pm

I'm also astounded that they wouldn't admit him. Do you think it was because of Covid-19?

BTW, how is Keytruda working for him?
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 LN,5 mesentery nodes
5mm liver met
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 LNs in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/20 MRI stable/NED
6/20 Stop Key
All MRIs NED

TrojanGirlie
Posts: 20
Joined: Sun Jan 08, 2017 4:17 pm
Facebook Username: Emily Ochoa

Re: Meningitis

Postby TrojanGirlie » Tue Jun 09, 2020 10:00 pm

He is at home now recovering from meningitis and he will have his port removed next week as well. I asked if the reason be wasnt being admitted was due to COVID but they said it wasn't, it was because he could get the same level of care at home. He ended up staying 5 days in the hospital and is now at home doing IV antibiotics 3 times a day and anti seizure meds.

His Keytruda has been great. At one point he had almost his entire liver covered in cancer and a spot on his spine and within 3 months the liver and spine were clear. Recently all of hi lymph nodes have been clear as well. Just one stubborn spot where the original tumor was. But he does have proctitis and they think that might be from the Keytruda. But this would be his first bad side effect in the last 4 years. At one point, he had only a few months to live so Keytruda has been a blessing
31 year old Husband DX Stage 3 rectal cancer - 5/16
Xeloda and Radiation (6 weeks) - 8/16
mets to liver, Stage 4 - 10/16
5FU-Erbitux-Irinotecan - 10/16-4/17
Keytruda and XELOX- 5/17-11/17
Keytruda and Xeloda- 11/17-now
Lynch Syndrome positive and MSI-high

DarknessEmbraced
Posts: 3816
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Meningitis

Postby DarknessEmbraced » Sat Jun 13, 2020 12:36 pm

I'm glad Keytruda is helping him and I hope he feels better soon!*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)


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