Feeling like deja vu

Ashleyjan7

Hello all,

I've posted a few times in regards to my mom's battle with stage IV endometrial cancer in regards to a thread about Keytruda & Lenvima side effects but figured this might reach others as well.

Quick background: in March of 2018 my mom had a total hysterectomy for what was confirmed as stage 1 endometrial cancer. I'm not entirely sure of the grade but I have to assume it was grade 1 as no additional treatment/follow up was needed.

Fast forward to the summer of 2020. My mom experienced persistent bloating and back pain for about 2 months. She thought it was severe constipation and had an x-ray done which showed nothing sinister. She was a little "backed up" and had a single gallstone. They loaded her up with laxatives but a week later she still had a distended abdomen and discomfort. She ended up going to the ER and was given a CT scan which revealed significant ascites and tiny tumors all over her peritoneal cavity and omentum. It was determined it was the endometrial cancer that was considered "cured" 2 years ago.

She started chemo and responded remarkably well for about 9-10 months until her ca125 numbers kept going up and up (scans showed no growth in the remaining spots and no new spots). Her oncologist wanted to switch gears right away and put her on the K&L combo. She has had nothing but problems since but an MRI a month ago showed no new spots. Her doctor scheduled her for a PETscan in mid November. He also wanted to biopsy one of the remaining tumors but it was denied by the hospital as the tumors are too tiny to safely be able to access.

My mom has a history of gastritis and still has the gallstones (as noted on her July CT which stated she had a distended gallbladder and stones). A week and a half ago she thought she was having a gastritis flair up and her oncologist's NP agreed. Started her on some meds and she felt great for a few days. Last weekend she couldn't keep anything down, throwing up non stop and could not use the bathroom. Her oncologist's NP said might be her gallstones and scheduled her to come in Wednesday. The vomiting stopped Sunday night but by then she said she felt she had a "brick" in her stomach. Thought she had gas but couldn't pass it. Tuesday she was finally able to and felt better than she had in over a week. She saw the NP again yesterday who said her abdomen felt a bit more distended and firm than the week prior. She ordered an urgent CT scan of her abdomen and pelvis which we are waiting to be scheduled.

From what I understand, the gallstones are still a possibility but I can't help to reflect how this feels so similar to how all this started a little over a year ago. I am just beside myself and although I know her cancer isn't curable it's so hard for me to comprehend how she could go from being relatively fine then suddenly her cancer could have grown so much in the last 10 days to show symptoms when it literally took two years to show any initially.

Has anyone gone through anything similar?

thanks in advance for reading such a crazy long post.

SF73

I am so sorry Ashleyjan7. I

I am so sorry Ashleyjan7. I dont have the experience you are looking for but I wanted to wish you and your mother well. Good luck with the CT Scan. Hope you guys can get it scheduled soon. 

Ashleyjan7

Thanks so much. Fortunately

Thanks so much. Fortunately she got it scheduled for tomorrow morning and has a follow up appointment Monday afternoon. I guess the NP did mention a possible hernia as well but obviously I've already just convinced myself it's the worst outcome it could be. Physically she is feeling increasingly better every day since this started late last week so I'm grateful for that.

Harmanygroves

I couldn't have kids, but...

It brings me to tears to know how much love you have for your mom. You are such a good daughter.

You can't be blamed for assuming the worst. Unfortunately, there is so much to fear. It's normal for us to fear the worst--the feelings of anxiety are so hard to deal with. Keep us posted. We are all here for you. 

NoTimeForCancer

Ashleyjan7, as SF73 noted, I

Ashleyjan7, as SF73 noted, I don't have any experience with this either but am sending prayers to you and your family.  Your mom certainly has a loving daughter and it tells us a lot about her.  Hugs dear one.

Ashleyjan7

Thank you so much! Your

Thank you so much! Your comment has brought me to tears! No one deserves this horrid disease but it seems extra unfair to her as someone who has been knocked down her entire life. Some days I'm extremely sad about it and others I'm extremely angry. Sometimes I'm in denial about the severity of the situation and think her outcome will be "different". Ive been reading a lot of threads on here and while I know quite a few people have been lost along the way, I've seen so many positive stories as well so thank you all for that!

 

 

Ashleyjan7

I really appreciate that!

I really appreciate that! Although I'm not the one battling this horrid disease, watching the person you love most in the world go through it is my worst nightmare come true. Thank you all for being so welcoming and caring.

Afoste3

Hi Ashleyjan7

My mom also has stage IV endo cancer; a little different from your mom because it was "bad" from the start.  It would be very difficult to think it was over and then have it return.  Such a shock I'm sure.  We had a similar experience in July with the ascites.  My mom felt terrible.  For her, the fluid was drained.  That brought some immediate relief.  Then, she was started on Aromasin (an estrogen blocker, she's already done the carbo/taxol chemo once).  That seems to be helping, she's been feeling much better and the CA-125 dropped.  We have an appointment this afternoon so we'll know for sure what's happening.

 

Were they able to test any part of your mom's tumor to see if it is estrogen-receptor positive?  If that's the case, she could perhaps try hormone therapy too.  My mom has also been precribed a drug called Ibrance because her tumor testing showed amplification at the gene associated with that drug (it's usually for breast cancer).  If her scan shows growth she'll probably start on that.

All this is being done to try to avoid going back on chemo.  Even if these drugs aren't right for your mom, the draining was SO easy and painless and brings immediate relief.  So if the ascites are back I'd ask about that. If they keep returning a stent can be placed that enables her to drain them at home.  As I understand it the buildup of fluid is what makes them feel so awful.

It is a rough road for sure.  But one day at a time, otherwise it's hard to stay sane lol.

Anne-Marie

Ashleyjan7

Hi Anne-Marie,

Hi Anne-Marie,

 

Thanks so much for the feedback. When the cancer was first "rediscovered" a year ago she had significant ascites and had to get drained twice. It stopped as soon as she started chemo. It definitely could be the culprit again, which worries me as she is still on the Keytruda (and a break from the Lenvima as it was causing bad skin issues).

 

Her cancer is estrogen positive and she has been on an anti estrogen medication from the beginning as well.

Honestly looking back over the last couple of months it seems like ever since the started the Keytruda/Lenvima she's had stomach/GI issues but most were attributed to the Lenvima (which she hasnt been on in about 2 weeks) but from what I've discovered it seems like Keytruda can cause a lot of GI issues as well. 

Unfortunately she doesn't have her follow up from her scan until late Monday afternoon so I guess I'm trying to think of other potential causes in an attempt to stay sane over the weekend. You're right, one day at a time!

Ashleyjan7

Forgot to mention that I hope

Forgot to mention that I hope your mom's appointment goes well!! 

Forherself

Your Mom

Sorry she is having so much trouble.  But it does sound like it could be gall stones.  Sometimes I say on this board that it might be helpful to see another specialist.  Does she see a general surgeon about her gall bladder.  Sometimes they can deal with this problem better.  Outside of her cancer, if she has stones maybe she should see someone who could remove them.  They can be very miserable.  

 

MoeKay

Abdominal Bloating

Hi Ashleyjan7,

With your Mom having a distended gallbladder, symptoms of which are bloating and vomiting, in addition to being on Keytruda, which can also cause bloating and constipation, I would try not to jump to the conclusion at this point that her symptoms are cancer-related.  Also, she has only been off the Lenvima a couple of weeks, so she still may be experiencing side effects from that drug.  My childhood friend was on the K/L combo and also had to discontinue the Lenvima due to horrible vomiting.  Here's a list of all the potential gastrointestinal side effects from Ketruda, which includes bloating, constipation, and vomiting, among others.  https://www.oncolink.org/cancer-treatment/oncolink-rx/pembrolizumab-keytruda-r

I hope your Mom is feeling much better today.  Good luck to you and your Mom, and let us know what you find out on Monday!

jan9wils

Hi Ashleyjan7,

Hi Ashleyjan7,

Thank you for being an advocate for your mother when she is feeling so poorly she maybe can't advocate for herself.  I have never been on K/L but I was in a clinical trial for an immunotherapy drug.  My immune system went into "hyper-drive" and began attacking organs.  One of them was my gallbladder, which was removed. I was hospitalized for nearly a month with severe vomiting and diarrhea and it took a rather long course of steroids to get my system back under control. You can click on my name to read my story. I began with stage 1B grade 2 seven years ago and have had several recurrences. And here I am still battling this horrific disease. I do have good periods in between treatments where I enjoy life like "normal" and I pray that your mother will too.

Jan

Ashleyjan7

Thanks for replying! She does

Thanks for replying! She does not have a specialist for her gallbladder but if it does turn out to be the stones causing this problem I'm sure she will be referred to one.

Ashleyjan7

I'm sorry to hear your friend

I'm sorry to hear your friend had such a bad experience on the combo. It seems like I've heard people either do very well with no side effects or have every side effect possible.

she has been feeling better, thank you. But a few days this past week she said she had excessive gas with abdominal cramping. We think we figured out the issue behind that though. It seemed to be shortly after she consumed milk/dairy this would happen. When she hasn't had dairy, she hasn't seemed to have a problem so we're thinking she developed a dairy allergy on top of everything else. She hasn't had dairy since Friday and is feeling far better. I, however seem to have become violently ill from worrying about her appointment tomorrow. Ugh. 

 

 

Ashleyjan7

Hi Jan

I'm sorry to hear immunotherapy caused such havoc on your GI system too! Thankfully the vomiting for her had stopped for a week now but as I mentioned in another reply, it seems she's been having a reaction to dairy suddenly. Not sure if any of it is related to the gallstones (if that is in fact causing the problem) or the Keytruda or just something that happened. i don't think my mom will ever be off treatment but I definitely hope she has "normal" periods again. Hope you are feeling well now!

Ashleyjan7

My anxiety is definitely off

My anxiety is definitely off the charts today. Can't get any work done... just want to try to sleep and not think.

Afoste3

Thinking of you

Hope your mom's appointment goes ok, please keep us updated if you feel up to it.

Anne-Marie

Ashleyjan7

Update, sort of

Hi ladies, so my mom just got back from her appointment. Living across the country in different time zones doesn't make things much easier. She said the CT scan didn't show any growth in current tumors and no new spots but there is a build up of fluid so she will need to get drained like when she was first diagnosed and may have to go back on chemo. She claims for now they are keeping her on the K&L combo which doesn't make sense to me becsuse I know fluid accumulation is associated with disease progression. Her husband is being very dramatic right now so unfortunately I can't talk to her to get more information at the moment. Currently I'm just confused and still worried.

Afoste3

do you talk with her doctor directly?

I'm not sure if it would work for you, but does your mom give you access to her mychart?  I have my mom's password so I can see test results and write her doctor directly.  If your mom consents to it, the doctors should talk to you directly.  I'm lucky that I live relatively close to my parents, so I can drive home to the appointments.  The times I can't I'll have the doctor call me and put it on speakerphone during the appointment.  If I didn't engage directly with the doctors, I doubt I'd get much/correct information from my mom.  I think being the patient is very overwhelming and it's hard to keep track of everything on your own, especially when the news isn't so good.

But I'm able to do this because my mom (and dad) are good with me getting involved (maybe a little too involved sometimes lol).  Maybe that wouldn't work so well with your mom, especially if her husband is in the mix.

The ascites are very confusing, for my mom they showed up with no visible disease.  The explanation we got was that there are tiny tumors not visible on CT that are causing them.  It's very distressing, I hope your mom gets drained soon and feels better.

Anne-Marie

Ashleyjan7

Hi Anne-Marie,

Hi Anne-Marie,

 

I do have access to her portal. Unfortunately the only results that are ever in there are from bloodwork. I believe my brother tried to message the doctor once but his medical assistant said he needed to set up an appointment (with my mom since she is the patient) to speak with him. I'm not sure if it was a miscommunication or what, but she had an upcoming appointment anyway so my brother just went with her. Maybe I'll try to message as well though and see what happens.

I thought about having them call me yesterday and putting me on speakerphone but I had thought my brother was going with her to the appointment but it turns out she said she didn't need him to. 

The ascites is so confusing and frustrating, I agree. She had a PETscan back in May that showed "significant response to therapy" (the chemo she was on at the time) but since then her CA-125 had done nothing but go up. She had a CT scan in late July that showed no new growths and no growth in any existing nodules, but since the CA-125 kept rising, her oncologist switched her to the K/L combo. Both scans did show a trace of ascites with a very small amount more in the July scan.

Since the K/L combo, she had an MRI a little over a month ago which again showed no new growths and no growth in any existing nodules. There was still fluid, but the doctor said it COULD be due to dead cancer cells (I think.... my brother told me this as I did not hear this myself). I went in her chart and looked like the CA-125 went back up at the end of September (a little more than a week after the MRI) but she doesn't seem to have been told this as they continued on with the Keytruda infusion last week. Then now there's the fluid again which she's waiting for an appointment to get drained.  It's so frustrating that these apparently didn't show on the CT in July, the MRI a month ago, now shows as ascites but apparently still not showing on the CT scan from a few days ago. It's just so confusing and so much! I've done so much crying the last week that I just feel like a numb blob at this point.

 

Also, I know your mom had an appointment recently. How did that go?