Update on MIL post first chemo and onco f/u

marlin307

MIL had last learned that her insurance will not cover MD Anderson if the same procedures can be done at the hospital she works at.  Her sister works for an insurance company and explained to my husband there's no point trying to fight it because that's just the way it is.  I'm not willing to accept this what so ever.  I'm presently waiting for husband to text me her login info for her patient portal to MDA so I can email them to see what can be done.

She started her chemo at the hospital she works at last Monday.  She has continued to have little appetite and the little bit she does eat, she still states "if feels like the food is just sitting there" and she fights to keep the food down.  She has not vomited since the Sunday before chemo.  But she is slowly eating less.  She also started diarrhea this past Saturday, none yesterday and this morning she said it looks like bile.  She says she has been drinking quite a bit of water.  Her gums started getting sore over the weekend as well and she is scared to use the magic mouthwash because another chemo pt told her it was awful.  They did give prescribe her Zofran at her chemo appointment.  She said the first 3 days it help and then after it hasn't....she said she feels best in the mornings and by the afternoon/evenings she feels sick.

I researched the best rated whey protein with least smell and taste and found Tera's whey protein.  I tried it myself first in a bowl of malt o meal and after one scoop (which looked like so much), I could taste it was a little different than normal and noticed a change in texture.  I encouraged her to at least try to sprinkle it on food just to help.  I found those kid greek yogurt packets that do not require refrigeration (she's scared to drink anything cold after chemo and they told her not to) to hopefully help w/ protein and probiotics for the gut.  I don't think she's touched any of it.  I've tried a recipe w/ ground flaxseed, chia seeds, oats, almond butter, honey, cocoa powder, coconut milk, dark chocolate chips...thinking healthy fats, fiber, protein, antioxidants.  I told her if she didn't like them it wouldn't hurt my feelings.  I was just trying to think of other ways to get nutrition in her that would be a sweet treat.  I don't want to be perceived how BIL and SIL were doing it.  I just ask her to try, if a no go, then we'll try something else.     

Today was her follow up with the oncologist in our town post first chemo.  Her weight went from 114lbs about 3 weeks ago to 106lbs today.  We explained her problems eating and asked about J-tube.  His response, "if it's for a curable patient who has a blockage to the stomach, say a tumor to the back of the tongue, I will start them on chemo and radiation to shrink the tumor but will also cause more problems eating.  So then I recommend a feeding tube.  But in your case, there's no blockage, we take care of the nausea and I recommend eating whatever you can and doing the boost or ensure drinks often.  There's risk on aspiration pneumonia that your body could not handle and risk of infection".  She told him again she cannot stand the taste of boost or ensure.  She hates them so bad she told him they can do whatever they want to her body but does not want to take that.  He told her they make a compact one and she just needs to do it.  He added Reglan to her nausea meds.  Imodium for the diarrhea.  I asked about gatorade or pedialyte for the diarrhea and he said "some will be ok if she's not eating.  If she can eat full meals or do full meal replacements then no". 

We found out her HER2 is positive.  He explained that it makes it a more aggressive form of cancer and more likely for it to go to the brain (her MRI around 2 weeks ago show it has not moved to the brain).  He wants to add Herceptin to her next treatment next Monday.  This Wednesday she goes in for an ultrasound on her heart to make sure her heart can handle the herceptin.  She had lab work done today to check her electrolytes due to the diarrhea.  She was supposed to call back later to find out results.

Husband and I felt so frustrated after we left.  I feel like he was saying because her cancer is not curable, there's no point in placing a feeding tube in her and to force herself to get those drinks down she absolutely does not want to do.  I voiced concerns to the doctor that I feel she doesn't have the proper resources here for her support, there's no social worker involved, no nutritional education getting done, they have no one on call after office hours to ask questions if we want to know if she's had too much diarrhea or whatever.  Their only answer is the emergency room.  And nothing is said about the other support from this doctor.  I cannot even find support groups in our area for any kind of cancer.  I feel they see that since it's not curable, they'll do chemo and if it's tolerated and it helps then ok, screw it if you can't get proper nutrition though and continue to lose weight and grow weaker. 

Any thoughts to this??

Deathorglory

Awful that you guys have to go through this

Hello Stefanie,

It's awful what this cancer does and that you guys have to go through all of this.  Insurance companies are not in the business of helping patients.  They are in the business of making money, just like all other businesses are.  Their job is to reduce expenses (coverage) and increase revenue (premiums).  Things that are life and death to patients are just expenses and revenues to them.  Hopefully, someone at MDA is experienced at navigating the situation you find yourselves in and can help.  I'd be optimistic about that.  I'm at a quality cancer center and they have all sorts of resources/help available for financial matters.  I'd assume MDA does, too.  

As far as the weight loss & nutrition go, the hospital she's at must have a dietician on staff even if not a cancer specialist, right?  Can't she at least get a referral for that much?  I have no personal recommendations for what foods might work or not.  I lost a ton of weight myself.  I went from 165 to 115 the first time (chemo/radiation, surgery & bonus chemo).  I didn't put all of the weight back on by the time of my recurrence and dropped down to 115 again with just the chemo (folfox).  Eating became a lot more of a medical thing than an epicurean thing.  I forced myself to eat as much as I could, but I just told you how successful I was (not very).  It took me until a year ago to get back to my pre-cancer (2008) weight.  I'd encourage you to see if there are things she feels like she would eat and tolerate.  Anything she can get in and keep in is better than nothing.  Her doctor may feel that weight hasn't become enough of a pressing issue to warrant a feeding tube yet.  Stay on top of the doctor if she gets progressively worse.  She may reach a threshold where the doctor thinks it's worth it.  

You mention the nausea and diarrhea.  I was given a boatload of drugs to manage the nausea.  Thr three I can remember were zofran, reglan and emend.  I also had problems with diarrhea and was on three things for that.  One was just otc immodium.  The other two were prescriptions.  Lomotil was a pill.  Sandostatin was an injection I got every two weeks.

You said MIL is HER2+ and will be getting herceptin.  There have been two people on this site lately who have been told that "herceptin doesn't make any difference, so we don't use it" and "herceptin hasn't been approved by the FDA, so our hospital doesn't use it".  Herceptin has, in fact, both been approved by the FDA and scientifically proven to be effective against HER2+ EC.  At least you're not in that fight with your doctor.  I'm HER2+ myself and herceptin was added to my folfox and replaced the clinical trial I was considering when I had my recurrence in a lung.  Just last month I passed the six year mark of getting weekly herceptin.  I'm now five and a half years past my initial 7-8 month prognosis and am still going fairly strong.  I can only hope your MIL has a similar response to her treatment. 

I feel horrible for you guys having to deal with all of these frustrations.

All the best,

Ed