Need your hindsight! (Scared)

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mrslala
Posts: 4
Joined: Fri Oct 11, 2019 2:21 pm

Need your hindsight! (Scared)

Postby mrslala » Thu Oct 17, 2019 8:20 am

My sister has been in the regional medical center hospital (Oregon) for over a week. Little progress to control nausea and vomiting. Can't keep food or oral meds down going on 20 days. IV dilaudid because she vomits the morphine pill back up, and they can't re-give.

5FU LV completed 2nd round, postponed 3rd & hospitalized due to weight loss, nausea, not eating at 9 days after 2nd round
10/11/19 CT scan: 5FU LV not effective--no decrease, some reconfiguration of cancer.
Oncologist said pause chemo meds until regain weight and strength.

10/15/19 Still hospitalized. Started TPN nutrients. 2 seizures unknown cause, moved to ICU floor. CT: no brain cancer. Added anti seizure, and anti stroke meds.

10/16/19 Still high BP-put on meds, under control. High HR 128bpm! Moving to Cardiac floor. STILL NAUSEOUS, suppository and IV meds help but not relieve. Hospital says they've tried all the nausea meds. Can't find a mix or schedule that alleviates. Can't keep food or oral meds down.

I'm writing to get your perspective on this mess! Is the hospital inadequate to serve her? Does chemo leave this intense and lasting nausea normally? Is the nausea from something else? She's a patient of one of the largest cancer centers in our state. But is this enough?

I figure you've all been down this road, maybe you all can offer some insight on what to do next?!?
Thank you tons!!
-L
My SIS: 40 mom of kids 14, 12, 12, 10.
Dx: 8/19 CRC trans colon & rectum
T adenocarcinoma
T2N0M3
Stage IVb
mets: liver ?", 1 lung, ovary
MSS
BMI 16 !!
Lynch No
KRAS/BRAF no/no
mutated PIK3CA, ARID1A, IDH1
No surgeries or radiation rec.
5FU LV not effective
Hospitalized, TPN nutrients, HR 128!

martd
Posts: 114
Joined: Tue Nov 21, 2017 3:48 pm
Location: Phoenix, Az

Re: Need your hindsight! (Scared)

Postby martd » Thu Oct 17, 2019 11:09 am

I've seen numerous post where people have used THC for nausea. I never tried it myself but they all said It works really good. THC gummies seem to be what people use. In my case the worse nausea I had was from constipation, after relieving that the nausea would clear up.
49 y/o male dx 11/2017 crc
Stage 4 with 17 liver Mets, cea 490
RAS, BRAF WT Tp53 LOF
12 rounds folfox , avastin
5/18 cea 2.8 liver resection and pve
7/18 part 2 liver resection, remove right side of liver
Surgical site mrsa infection, wound vac
8/18 cea .9 cCR, rectal tumor is gone
Rectal surgery postponed, watch and wait
10/18 clear scan CEA .7
01/19 clear scan CEA .9
04/19 clear scan CEA .9
07/19 clear scan CEA 1.0

mrslala
Posts: 4
Joined: Fri Oct 11, 2019 2:21 pm

Re: Need your hindsight! (Scared)

Postby mrslala » Thu Oct 17, 2019 12:36 pm

Thank you for the idea, and you're right. THC capsules helped at home, tons!! But the hospital only uses synthetic marinol capsules and a lower dose so they don't work as well. We aren't allowed to bring in outside meds, of course.

I appreciate your help to offer ideas! Anything is welcome at this point.
Thank you!!

User avatar
Jacques
Posts: 566
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: Need your hindsight! (Scared)

Postby Jacques » Thu Oct 17, 2019 2:50 pm

mrslala wrote:...I'm writing to get your perspective on this mess! Is the hospital inadequate to serve her? Does chemo leave this intense and lasting nausea normally? Is the nausea from something else? She's a patient of one of the largest cancer centers in our state. But is this enough?
I figure you've all been down this road, maybe you all can offer some insight on what to do next?!?
Thank you tons!!
-L

I'm very sorry to hear about your sister. I don't have much insight on issues like this, but I do remember seeing someone on this board who had severe reactions like this to 5FU based chemo. In that case, the problem was a very rare condition affecting only about 3% of patients.

You can read about it here:

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=46322&p=338372#p338372

The condition is called DPD - Dihydropyrimidine Dehydrogenase Deficiency.

You might consider asking the doctors if they have remembered to do this test,

- - -
Also thank you for mentioning BMI in your signature. This is very important because it gives an indication of possible onset of "wasting syndrome":

https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=60650&p=480368#p480368
Last edited by Jacques on Thu Oct 17, 2019 11:43 pm, edited 1 time in total.

Windswept
Posts: 4
Joined: Mon Apr 01, 2019 12:29 pm

Re: Need your hindsight! (Scared)

Postby Windswept » Thu Oct 17, 2019 9:20 pm

I'm sorry she's going through all of this. 5fu is typically not a highly emetic drug so my instinct is that something else is going on. My understanding is that the DPD deficiency causes cardiac issues, but I agree with the other comment that it is worth asking about. Have they tried olanzapine? It is used preventatively in cases of extreme nausea/vomiting...not sure if it can be used to control it once started. And they are sure she doesn't have an intestinal blockage? I'm guessing the CT would have shown that? I really hope they can get it under control, this must be scary for you all. Also, I know this isn't what you posted about but I'm wondering why they chose just 5fu instead of doing folfox (which does typically cause more nausea but is first line for CRC). I only mention it since it you potentially have other concerns about the hospital, so maybe that's something worth understanding as well.
8/16 Dx stage IV RC, lung met, @30
MSS, KRAS G12D
FOLFOX, chemorads
7/17 APR surgery
9/17 Wedge resection
11/17 More in lungs
FOLFIRI
7/18 Wedge resection
10/18 Wedge resection
3/19 More in lungs
8/19 Bone mets (spine), 5FU+Bev

boxhill
Posts: 405
Joined: Fri Apr 06, 2018 11:40 am

Re: Need your hindsight! (Scared)

Postby boxhill » Sat Oct 19, 2019 6:41 pm

Poor woman, it sounds dreadful.

I'm afraid I don't have any insight into the situation, other than to say that I was having episodes earlier this year that remain somewhat mysterious. I was initially put on an anti-stroke regimen of blood thinners, etc, then at one point they put me on an anti-seizure med called Kepra which made me feel dreadful, although nausea was not one of the issues it caused. (It has now been decided that these turns are not seizures or TIAs, but unusually strong episodes of orthostatic hypotension.) My late father was at one point put on an anti-seizure med that my mother said made him violently ill: uncontrollable nausea, etc. So some such meds can have dire side effects. DO you know if she has had an MRI of her brain? It can show more than a CT: I had both.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28
7/9/18 CT NED
11/20/18 CT NED. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met? and 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/5/19 Triphasic CT LN and spleen normal, Liver node stable
6/28/19 Pause Keytruda, predisone for joint pain
7/31/19 Restart Keytruda
9/10/19 CT stable

NHMike
Posts: 2338
Joined: Fri Jul 21, 2017 3:43 am

Re: Need your hindsight! (Scared)

Postby NHMike » Sat Oct 19, 2019 7:14 pm

I didn't have nausea fro 5FU but did from Oxaliplatin but I don't think that it's being used here. There is one other drug I think and maybe that's the cause.

I do not know about the hospitals in Oregon so I can't comment there but I would generally use the hospitals in Boston over my local, regional hospital if I had something difficult.
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; 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, 2/12 1.2
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
2/19: Clean CT

User avatar
Jacques
Posts: 566
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: Need your hindsight! (Scared)

Postby Jacques » Sat Oct 19, 2019 11:16 pm

mrslala wrote:My sister has been in the regional medical center hospital (Oregon) for over a week....She's a patient of one of the largest cancer centers in our state. But is this enough? ...

If you are concerhed about the quality of care at your paticular hospital, you can look up the ratings of Oregon hospitals in the U.S News and World Report rankings, particularly the ratings in the cancer (oncology) area:

https://health.usnews.com/best-hospitals/area/or

Please note that there are over 25 "regional medical center hospitals" in Oregon and more than 75 hospitals altogether. The fact that it is a regional center is not the most important issue. The real point is whether it has an oncology division with top ratings. You can check on this by looking at the U.S. News Report (in the link above) for the different specialities at your hospiral.

https://en.m.wikipedia.org/wiki/List_of_hospitals_in_Oregon

stu
Posts: 1223
Joined: Sat Aug 17, 2013 5:46 pm

Re: Need your hindsight! (Scared)

Postby stu » Sun Oct 20, 2019 3:18 am

What a shame . How is her electrolytes holding up ? My mum had sever symptoms due to her potassium being knocked off . I am assuming it is all evaluated but you just never know .
She was unable to stand , vomited all the time . What a state she was in .
Take care ,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

mrslala
Posts: 4
Joined: Fri Oct 11, 2019 2:21 pm

Re: Need your hindsight! (Scared)

Postby mrslala » Sun Oct 20, 2019 10:35 pm

Thank you so much! Thank you everyone!!
She was moved from the ONC floor to the ICU floor. There they put her on a fentanil (sp?) patch, lovenox to prevent clots, some antiseizure med, bp decreased to ok, and hp to acceptable, They determined that since she wasn’t able to keep anything taken orally down (duh!!) they started compazine suppositories. They also put her on.a.schedule. !Finally! I don’t know why the ONC floor didn’t do this, they made her ask for everything. So she would sleep past her morphine time and wake up in pain then vomit and more pain and she would sleep they the nausea meds due time and wake up vomiting. The nights I stayed w her were the best bc I would set alarms and keep on top of the pain and keep the nausea meds layered and overlapping so as not wear off. I was so frustrated on ONC floor. ICU was great. They did a CT of her head, it was clear. But no MRI... She started doing so much better in the ICU, still not eating but the nutrient TPN seemed to be being absorbed and her body getting back online. She was able to sit up and talk with us!! She was clear headed and color coming back. Things are looking up!
She has always had eating issues—picky picky picky. So I’m just thankful for more time to be able to work on this issue.

I’m grateful to all of you for sharing your ideas and suggestions—truly. Thank you!!
-L
My SIS: 40 mom of kids 14, 12, 12, 10.
Dx: 8/19 CRC trans colon & rectum
T adenocarcinoma
T2N0M3
Stage IVb
mets: liver ?", 1 lung, ovary
MSS
BMI 16 !!
Lynch No
KRAS/BRAF no/no
mutated PIK3CA, ARID1A, IDH1
No surgeries or radiation rec.
5FU LV not effective
Hospitalized, TPN nutrients, HR 128!

wife2jeff
Posts: 63
Joined: Thu Sep 12, 2019 11:21 pm

Re: Need your hindsight! (Scared)

Postby wife2jeff » Sat Nov 23, 2019 1:00 pm

I am so sorry to hear about your sister, I sure hope they can find something that will work for her, I couldn't even imagine. It's hard as a caretaker to see our loved ones go through this. My husband just had his 6th chemo and this was the first with the oxaliplatin added and only at half dose, he has been way more sick and tired with even with just a half dose. He has been sick, flu like, nauseated pukey feeling for going on 5 days now no letting up. He has slept the last 4 days. He doesn't think he can do the oxy again. I was wondering which hospital you are at? We are in the Portland metro area. If you need anyone to talk to please feel free to pm me, I have found there is no groups or support anywhere for caregivers or patients in our area which is sad. Hope she gets better soon.

Maelleous
Posts: 125
Joined: Tue Nov 01, 2016 8:13 am
Location: FL

Re: Need your hindsight! (Scared)

Postby Maelleous » Tue Nov 26, 2019 1:44 pm

I do not want to scare you, but I had similar issues and cardiac arrest from 5-FU. I am glad they have her in a cardiac unit. I did find (before the cardiac arrest) that THC helped immensely with the eating/vomiting. Eventually my docs decided 3 rounds was enough. I am 3 years later.. hopefully it stays gone.
M 35 yr
DX Rectal Cancer, 10/16 (symptoms Feb 2016)
Dx stage 2 - Surgery Oct 25 201 Loop ileo w/ j-pouch
Close margins within 1mm
9/38 lymph nodes involved on path / Stg IIIc,pT4, pN2 B, p.M0. MSS, K‐ras, NRAS, no mutation
Started Folfox - 3rd Treament, Dec 30th 2016 Cardiac Arrest - Lucky to be part of the 6% to survive!
S-ICD installed / Port Removed
Vaccine Clinical trial at UPMC - last shot June 2017
Reversal 8/1/17 - Praying this is it!
Still NED


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