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Need your hindsight! (Scared)

Posted: Thu Oct 17, 2019 8:20 am
by mrslala
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

Re: Need your hindsight! (Scared)

Posted: Thu Oct 17, 2019 11:09 am
by martd
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.

Re: Need your hindsight! (Scared)

Posted: Thu Oct 17, 2019 12:36 pm
by mrslala
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!!

Re: Need your hindsight! (Scared)

Posted: Thu Oct 17, 2019 2:50 pm
by Jacques
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

Re: Need your hindsight! (Scared)

Posted: Thu Oct 17, 2019 9:20 pm
by Windswept
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.

Re: Need your hindsight! (Scared)

Posted: Sat Oct 19, 2019 6:41 pm
by boxhill
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.

Re: Need your hindsight! (Scared)

Posted: Sat Oct 19, 2019 7:14 pm
by NHMike
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.

Re: Need your hindsight! (Scared)

Posted: Sat Oct 19, 2019 11:16 pm
by Jacques
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

Re: Need your hindsight! (Scared)

Posted: Sun Oct 20, 2019 3:18 am
by stu
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

Re: Need your hindsight! (Scared)

Posted: Sun Oct 20, 2019 10:35 pm
by mrslala
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

Re: Need your hindsight! (Scared)

Posted: Sat Nov 23, 2019 1:00 pm
by wife2jeff
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.

Re: Need your hindsight! (Scared)

Posted: Tue Nov 26, 2019 1:44 pm
by Maelleous
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.