Feeling like deja vu

Afoste3

interesting about the mychart

I'm curious if there is a setting on your mom's chart that restricts what information is posted that can be changed--my mom has a few portals from different hospitals and they all post every test result (scans, bloodwork, whatever).  The doctor's notes are also posted from each appointment once it's done.  I've gone back into those and got info that I missed even though I was there (and sometimes things are added in after). If you want more information maybe that is something to think about?

I will say that my motivation for wanting all the info is good to a point, but then it tips over into trying to control a situation that is actually pretty much out of our control.  While I think it definitely helps to keep an eye on what's happening and advocate strongly for treatment when it makes sense, the hard part is it is a crapshoot whether the treatment works and how the cancer progresses.  But it does help my anxiety for me to know what is actually happening and the options, as opposed to wondering whether I have the whole story or something is missed.  Maybe figuring out a way to get more information will help you too (?)  Perhaps a televisit with you, your mom and the doctor so you can see the person, ask questions and really figure out what's happening and why she's staying on the K/L?

My mom's appointment was pretty good thanks for asking.  The ascites are almost gone, and while there are some areas of concern, the plan is to stay the course on Aromasin and scan again in 3 months as long as she's feeling better.  I'm trying to just enjoy this time instead of worrying what will happen in the interim, not always doing that though.  I can relate to to the emotional rollercoaster--good news, bad news, always on edge waiting for something to get worse.  We need to take care of ourselves too, I know my mom doesn't want me feeling sick over this all the time, I'm sure your mom is the same

Anne-Marie

Ashleyjan7

I'm glad to hear your mom's

I'm glad to hear your mom's appointment went well!

I feel like everything you're saying you're reading my mind. Having access to more information helps my anxiety but also puts me in that place of trying to be in control, when as you said we don't have any in this situation. She has a phone follow up with her oncologist's NP on Friday and my brother will be on that so at least we will have another set of ears.

unfortunately my mom isn't able to get her ascites drained until Monday, ugh but was told if her symptoms turn into shortness of breath or unable to use the bathroom then head to the ER. She seems to be managing ok though, even made a casserole for her husband's work potluck. 

Ashleyjan7

Well ladies, it turns out the

Well ladies, it turns out the feeling of deja vu wasn't just a feeling. The K/L combo isn't working confirmed by her petscan. There has been progression in her abdomen and a few lymph nodes elsewhere in her body. No liver or lung mets though unlike when she was first diagnosed if that can be considered good news. (can it? probably not since there's a whole mess of cancer anyway). She's actually coming to visit me today through Wednesday and when she gets back to AZ they will be starting her on megace, then introducing another anti estrogen (I forget which) and then hoping to add Doxil if an echocardiogram shows she can tolerate it. I'm of course deveststed, and as usual she is handling it much better than I am. However, I'm less devestated than I was a couple weeks ago when a CT scan showed significant ascites. Maybe it's because I was expecting this news? Maybe it's because I'm so excited for her visit I'm trying to focus on that instead? Maybe I'm grateful there ARE still options? I know once we get down the line they become less likely to work but I have to cling on to hope so I don't crumble. If anyone has any positive stories of chemos other than carbo/taxol I'd love to hear them.

 

- Ashley

Harmanygroves

I just want to say...

You are a wonderful daughter. Enjoy your time with your mom. Crumble as much as you need to, but while your mom is here, enjoy that very, very precious visit. It is impossible to understand other people's family dynamics, but when my own parents were very ill, I would be on my knees holding their hands, smiling, feeding little bites of food. Every moment you can love your mom, smile with her, and nourish her however you do so is precious. I envy your mom. She must feel so loved by you. 

Ashleyjan7

Thank you so much for those

Thank you so much for those words! I'm sitting in the parking lot at the airport now welling up. I plan on treasuring every minute!

Harmanygroves

I am so happy for you, AshleyJan7

You get to be with your mom! Can't wait for the updates. 

Lasha12

Hello, I have Uterine Papillary Serous Carcinoma taking Immunotherapy (Keytruda and Lenvima) and having severe constipation problems which is one of the worst side-effects. However, I too had digestive issues all my life but not like this. It's difficult for me to expel gas so it builds up. Anyway, I can give advice re my situation:

Diet is highly important, I follow an anti-cancer Mediterranean type diet ALL ORGANIC. I CANNOT have pasta, doesn't matter if it's organic or whatever, it will block me up and lead to inevitable constipation which means a Fleet Enema. Also have problems with breads, even the good kinds. I can process simple cereals, buckwheat and spelt. No cow milk, I use Almond milk. Lots of fruits and veggies. No sugar of any kind that means sucrose etc. use organic stevia or agave nectar. Green decaf tea. No coffee. Strawberries and blueberries raw scrubbed with baking soda and washed. One of my favorite meals is ocean caught sardines in olive oil, with tomatoes, garlic, brussel sprouts, carefully chosen lettuce, Organicville Dijon Mustard (ingredients water, organic mustard seed, organic vinegar, organic tumeric, organic spice). It's a delicious mix, small and the olive oil is great for digestion.

Keep meals small throughout the day. Large meals are a no-no. I take 4 tbs of organic olive oil daily, 6 colace and 1 glass of milk of magnesia. Usually this combination works unless I deviate from the regiment.

Drink lots of water all day long. Make sure it's filtered and DON'T using any Graphene-based water filters. It is toxic.

Exercise every day, unless I absolutely cannot. I believe if your body is saying "nope, not today, need to rest" I respect the message and don't feel guilty.

I wish everyone the very best. Get close to GOD as this has also made a huge difference in my life.

Sorry about the bold type but I messed up somehow : (

Ashleyjan7

https://csn.cancer.org/discussion/comment/1694609#Comment_1694609

Hi Lasha,

Thank you for sharing your experience. My mom has long been off the K&L combo (recently just decided to stop treatment altogether) but I hope this is useful information for others!

Lasha12

My regards to your mother :) I understand it did not work for her. It's really a throw of the dice if something works or not. I believe this is the case with alternative or organic treatments as well. What is megace if you don't mind my asking?

Ashleyjan7

https://csn.cancer.org/discussion/comment/1694741#Comment_1694741

thank you. And Megace is an anti-estrogen given in pill form. Her cancer is mostly estrogen dependent.