how could a doctor just give up

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So I finally reached the Doctor today about mom not eating. i told him that she is trying to put food or drinks down but it just comes back up. I also told him that last week when on the steroids she ate a small amount but that shortly ended after the steroids ended so he adviced to have her take the steroids for 2 days to see if we would have some success in eating. He then said if that doesn't help then the next step would be to bring her into the hospital. This I knew and kinda wish he would just skip right to that step but i'll take his orders. I then made a comment about how malnutrition doesnt exactly allow the chemo to do its job. he agreed and then said well your mom didnt have a good diagnoses to begin with and we may need to think about ending chemo and just going with Comfort care. I mean what the hell? Excuse me while I totally flip out. I'm sitting at work in total tears and at the same time wanting to drill the doc in his face. My mom has had her primary surgically removed, had her brain mets removed and we now only have cancer in the adrenal. Her radiation oncologist already told her the adrenal can be radiated or removed. She failed 1 round of chemo and the docs already just wanting to give up? He's watched her waste away from 115lbs to 85 lbs week by week and hasn't done anything. Just saying weight loss is common. Mom is extremely weak and only wants to sleep. I see so many of you survive this, failing chemo after chemo. Recurring and still fighting it. I've seen some who've had to have feeding tubes from lack of nutrition and still in the fight yrs later. We've already left one hopital to come to this one. I just dont know what to do. we arent ready to give in to this beast when we've only have it in one stupid gland you dont really need to begin with

38 replies

I think having cancer in the adrenal gland can cause loss of weight in itself. Has your mother tried drinking protein enriched Ensure or other drinks of that kind?

Get in touch with her radiologist oncologist who has given your mother some hope. Let him know what is going on and see what he says.

My thoughts and prayers are with you and your mom.

Take care of yourself too :).

Bette

She's tried ensure but she can't keep much down. The radiation onc said he wanted to wait and use the adrenal as a marker to see if the chemo is actually working. the first sign of shrinkage and its radiated. She had her Gallbladder removed the week before starting chemo so anything sweet like ensure or boost turns her stomach.

You have a right to be angry - put the anger into positive thoughts and don't give up. Agree with Bette - do try Ensure or Boost. Soup does it for me.
Talk to radiation oncologist again - it sounds like you have some positive points in your favour. Good luck!

Sylvia

What a hurtful, stupid thing for the doctor to say!!! What is his role in your mom's case? If it is just a GP then just forget what he said - actually you should forget what he said no matter WHAT kind of doctor he is! I agree with Bette - speak to the radiation oncologist to regain your spirit and hope. Good Luck, and keep us posted!

Erin

this actually came straight from the oncologist. When I first met him he talked about seeing mircles happen and he's seen people do really well on chemo with lung cancer. Gave us so much hope and now he says that. Its like a brick wall. Im so scared now that they will force us into not taking chemo by not doing anything about her malnutrition. My poor mom is so frail now. 2 months ago she was so active. She went throught lung and brain surgery like it was nothing.

Sounds to me like that doctor isn't much of a fighter! With cancer that is localized like that she certainly has a good chance of fighting it! There are many patients I have read of on this site and others who have gone through really bad patches where one might give up hope but they come through to continue to fight for years.
I'm no doctor but to talk of comfort care only when the cancer is only in her adrenal seems premature?

You and your Mom need to fire your Mom's oncologist. Just because your Mom might have a poor prognosis, it doesn't mean she can't fight. To just ignore your calls for two days is criminal, IMO.

My parents' onc gives us hope even tho things don't look too promising long term for my dad. We will help Dad keep up the fight for as long as we can!

Kristi

It's definitely time for you to find a new oncologist. His response is unacceptable. I know especially now when your mom is so weak it will be hard for you to focus on finding someone new, but it really seems like your oncologist doesn't get it.

Susan

I guess for now the best thing for me to do is have her take the steroids like he said. last week she ate spaghetti on them. May not have been alot but it was something. While trying to get her eating I'll be looking for another oncologist. I mean every single person diagnosed with stage 4 or even stage 3 doesn't have a good prognosis. BUT even tho none of us care about statistics I look at it this way. It doesnt say we have a 0% chance of surviving now does it. Obviously people are doing it, many many of them here. It's pretty bad when you feel like the only good your doctor is doing is to write the order for chemo. We need an oncologist that believes his job is to assist people with living with cancer not dying of cancer.

Kallygirlie;

You are so right in thinking that malnutrition accounts for approx. 40% of cancer deaths, not the cancer itself.

Chemo and radiation changes the way food tastes also, and foods once enjoyed can later just plain taste nasty.

You mentioned your mom can't tolerate sweet foods...have you considered getting a really good blender? When I was going thru treatments, I used a Vita-Mix blender and completely juiced my foods while I couldn't swallow but could "sip".

I also used (and still drink) unsweetened soy milk. It is very high in nutrients and you can use it as a base for many other non-acidic foods that won't burn her throat or stomach, like brocolli, carrots, etc. (Most fruits will burn right now, even bananas). The trick is making sure it is REALLY blended and NON-acidic...you need alkaline based foods.

I might also add that before your mom goes the route of a feeding tube down the throat, (if it comes to that) inquire as to a temporary stomach bag instead. It sounds worse than it is; that is the method most used by MD Anderson I was told. I am a patirnt there and if I had needed one that is what their plans were for me. She can take it home with her and the food is actually poured/put into the bag until her strength returns.

What about anti nauseu meds? There are some powerful drugs out there that can easily be prescribed to help her keep foods down; and also meds to help her stomach "heal" from the nauseau. I am still taking 80 mg a day of perscription prilosec for various reasons but before I started taking it, my stomach was bleeding when I was nauseous.

I am going to also echo getting a new oncologist. Your moms doc sounds behind times and incompetent, to say the least.

Lastly, take care of yourself!

God bless, Ellen

You guys and gals never fail me. I love you all like my family. I'd simply be lost with out you. drawing3d all i can say is wow. Thats alot of info and actually I did buy and blender but couldnt find anything to make other than the normal fruit smoothie which was to sweet. I'll have to try the soy milk. It's also nice to know that the #1 cancer treatment center has a path for people like mom with malnutrition. After this mornings phone call, the doc made me feel completely hopeless cause I look at my mom sleeping and she's not the mom that raised me. She's so upset right now cause we planted a magnolia tree 4 yrs ago and on average it takes 5 yrs for the first flower to bloom. We have our first magnolia blooming and she really doesnt want to miss it. She wants so badly to feel better

Do you have access to a nutritionist? My parents' onc's office offers a nutritionist whom they can speak with at any time. They met with her last Friday for the first time. I do think that your Mom needs fluids. If need be, take her to the ER to get IV fluids.

Kristi

Thanks simplyklb and you're right, she does need fluids for sure concidering the amount shes been throwing up. As far as a nutritionist, I haven't looked and the docs haven't said anything. I'll have to put my google queen self to work and start searching for one.

Get your mom to the ER for IV fluids... The fluids should help her tons. Believe me, my dad has been getting IV fluids twice a week since May 21st. It has helped him get thru a really rough time. I think that Dad is finally on the upswing. I will know for sure when he goes in for a check up (including counts and fluids) on Friday. At that point, we will know if Dad can have his next round of chemo next week or not.

Kristi

You poor thing. You've certainly been through the ringer with this. I can't believe that doctor left you out on your own and was so negative. Is there another doctor of your mother's that might be able to step in regarding the malnutrition...a GP or internist or somebody else she sees? If you can get somebody who will guide you on what to do with that, whether to take the steroids or go to ER or whatever...then it will take a little of the pressure off you. Once you have this immediate problem taken care of, you will be able to focus on finding a new oncologist. Don't give up.

We don't have a GP actually. The GP she had mis diagnosed her back in august with an ulcer and let it set with no test for 4 months before her gastro decided to do a chest xray. Needless to say she hates them at this point. I'm just glad I was at work when i was told that cause it gives me 8 hrs to regroup before I go home. Mom is never to know any of this. She still has hope if she can get over this bump. My exact words to the onc this morning were "when is enough enough, when have we tried to the point of orgin failure, when do we finally get off our rear and do something" . I dont know, maybe I ticked him off by being so blunt and pushy but seriously, this is my moms life. I mean at first he was like try the steroids for 6 days. umm thats another week of possibly no food. I have 3 older brothers and none of them will step up and help me. My sister n law works with me and I'm so grateful I got her the job now cause she scrapped me off the floor this morning. My dad and I have never really been close but God knows I've needed the talks we've had lately. How can a doctor look at scans, say the words no spread and still give up. The adrenal grew a little but key word, no spread. Seriously, if you see the name Krystal in WV on the news for laying out an oncologist, you'll know it was me...haha!!! sorry humor releif

Krystal,
Just go to the ER... Just tell the triage nurse that your Mom is dehydrated and that she needs fluids. I am not trying to be an alarmist but your Mom could die. Don't wait for a doc to give you the green light... GO!

Kristi

The one thing i can say is they are good at givin her extra fluids each week with chemo. They normally check her hydration level. on average she would walk in with her blood pressure extremely low, extra fluids would be givin and she's walk out with normal blood pressure. This past Wed she walked in with normal blood pressure and they still gave her extra

That was six days ago. She needs IV fluids if she has not been eating or drinking since then. The oncologist and the nurse practitioner have been watching my dad like a hawk as far as his hydration goes go. They said he didn't really need them yesterday but he said "Let's do it." They will be giving him fluids on Friday because we all want him to be able to attend my niece's wedding Sat. night.

I am just looking out for you and your Mom. I am just a concerned family caregiver. :)

Kristi

Don't give up hope Kallie - fight strong - be informed and follow your gut feeling.

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