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2 month update on my mom

jzona's picture
jzona
Posts: 14
Joined: May 2017

Hello - It has been a while since my last update about...about 2 months ago.  In this time, my mom's new oncologist performed many  tests to determine the right course of treatment for her.  About a month ago, she began doxorubicin and has been tolerating the chemo pretty well.  She is now 2 cycles in, and she will have a scan possibly aftere round 4.  Additionally, her doctor is sending her file to the "foundation" to see if there are other recomennded courses of treatment.  Has anyone else had experience with the "foundation"?  I was not able to attend her last appt, and as such, I am not exactly sure what it is. 

 

5/24 Update

Yesterday, we met with my mom's new oncology proactice.  In summary, her prior oncologist has still not delivered her patholgy, which meant he was not yet able to determine if her cancer is hormone receptive.  His practice has demanded them by this Thursday at the latest.  If her cancer is hormone receptive, she will begin megace asap.  If not, she will begin doxorubicin (6 rounds, scanned again initially, and again at the mid point of treatment).  Additionally, he is going to biopsy the liver to determine if there could be a third course of treatment pending the pathogy of the lesion on her liver (there is still a tiny piece of me that is hopefull the lesion on her liver is one of the many cysts of her polycystic disease).  My mom continues to walk 2 miles each moring, her lungs sounded clean to the doctor, and she feels good.  One more note to add on her former oncologist...she told my mom she needed to have genetic testing to see if her cancer was attributed to lynch disease.  I asked about that yesterday, and her new onocolgist said labs already showed it was not...how can one doctor miss so much information?  Thank you all for your support, and I will continue to update you on this journey...her new doctor provided her with hope, and that is all we could ask for.

 

 

Update - After reviewing my mom's file, ordering extra labs, presenting her to tumor board and reviewing acutal pathology reports, my mom's new oncologist has scheduled her an appointment for next Tuesday.  Does anyone have any specific questions they would ask outside of the norm?

 

TY all so much!

 

Hello - My mom was diagnosed with uterine cancer in August of 2016 (a CT scan was performed at this point).At the point of biopsy, she was stage 1 grade 1.  Her oncologist assured her this was the best news possible, and if you want cancer, this is the cancer you want.  My mom's doctor told her there was no rush to have surgery, and surgery was scheduled for October of 2016, and no treatment would be necessary.  My mom had a full hysterectomy and double hernia repair was performed and following surgery, her oncologist told her she was actually a grade 2 stage 3.  At this point, we found out my mom would require treatment (3 rounds of carboplatin and taxol), plus 4 rounds of radiation.  (Please note, my mom has ploycystic kidney disease, had a trasplant 15 years ago, and the disease has spread to her liver).

In December, my mom developed blood clots, and another ct scan was performed, showed spots on her lungs (but not cancer according to her doctor).  In January she completed chemo, and February she completed radiation.

Her oncologist once again assured, that all treatment was preventative and no follow up tests needed to be performed (no CA 125 (which was never done), no CAT, no MRI, no PET).

In April, my mom visited her radiologist, and asked if he would be willing to perform a PET on her.  He said that was truly up to her oncologist, but as her oncologist would not order one, he did.  2 weeks later the radiologist called my mom to tell her she had a mass on her liver and spots on her lungs.

When we visited her oncologist last week, she stated there was nothing she could do for my mom and she followed all proper protocol. She never asked my mom for a copy of her PET (I even wonder if she saw it as it was done out of network), which makes me wonder if she only read the radiologist's report.  With my mom being assymptomatic, she still said the best things is to begin hospice!!! We left in shock and sadness as she looks and feels healthy.

We did schedule a second opinion, and are awaiting the results of tumor board.

Does any have any thoughts or advice?

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2728
Joined: Mar 2013

Yikes!  Can I ask where you live?  I think you are right to seek a second opinion.  Please let us know how it goes.

jzona's picture
jzona
Posts: 14
Joined: May 2017

Sure!  We are in Pittsburgh.  My mom is now with Magee Women's Hospital and is seeing Dr. Kelly who is the Cheif of Gyn/ Onc.  He is truly wonderful and has explored SO many options for my mom now.  It is truly is horrible that we did not start with him.

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2728
Joined: Mar 2013

jzona, I am originally from Pittsburgh and aware of some of the hospitals out there as I have family back there and need to keep up the good and the bad.  I wasn't aware of what Magee had but you would think they are in to the whole gyn cancer thing. 

Glad you found someone who is interested in being part of your mother's plan!

Kaleena's picture
Kaleena
Posts: 1980
Joined: Nov 2009

So glad your mom found someone who is giving her options and that she has such a great daughter to look into all of this!   I too am from the Pittsburgh area.   My best to you and your mom.

pinky104
Posts: 574
Joined: Feb 2013

I was told about Foundation One when I was diagnosed with cancer again earlier this year (my first bout with  uterine cancer was in 2010).  I had to apply for financing so they could see if there's anything I can do to keep my cancer from coming back.  I was told that nothing could be done until two complete batches (in my case, two different sets of 6 rounds of chemo lasting three weeks each) of chemo have been done, and even then, my GYN/onc wasn't sure if the genomic testing would be approved for uterine cancer as it's normally done only for ovarian cancer in his very busy office.   I was supposed to be the guinea pig to see if  the genomic testing for uterine cancer would be approved, and I still don't know whether it has been approved for that or not, as I didn't see the GYN/onc at my last appointment.  I just saw his PA, and I'm having an oncologist at another hospital (where I used to work) do my chemo.   I was, however, approved for 100% financing, which made me very happy.  The normal cost is $5,800, and I figured that having a decent retirement income, I would have to pay a good part of it, so I was very happy to hear it would all be covered if I am able to get it approved.   

My oncologist told me that this testing would look for both defective genes that came down through the family which might have caused my cancer plus ones that were in the tumor itself that spontaneously mutated to cause my cancer. I hope I'm saying this the correct way.  I think the idea is to look for the ideal treatment for my cancer, whether it's  chemo, immunotherapy, or whatever will work to keep it from coming back a third time. I'm in week two of my fourth round of chemo, so it will be about a month and a half before I can even find out if it will be done.  My mother, grandmother, and cousin have all had breast cancer.  My cousin recently had genetic testing which came out negative.  When I told my oncologist about that, he told me about the genetics in the tumor itself which might have caused her cancer.  I have been tested with a negative result for Lynch syndrome, but have never been tested for the breast cancer genes.  My last insurance company wouldn't approve the testing for genetic breast cancer as I didn't have enough "first degree" relatives with a history of it.  My cousin was found to have breast cancer this June, but even  she  wouldn't be considered a first degree relative.

There is a website for the foundation.  It's www.foundationmedicine.com in case you want to check it out. Good luck to your Mom.  Let us know what they find if the testing is done. 

takingcontrol58
Posts: 257
Joined: Jan 2016

Pinky,
I had my tumor profiled through Foundation One in Jan 2015.  I don't know why there is a question for getting approval for uterine cancer testing.
Foundation One tests 315 genes- it is one of the most comprehensive testing organizations out there- they work with the National Institutes of Health. Many
insurance companies consider them experimental. 

Lynch syndrome only accounts for a small fraction of endometrial cancers- and inherited mutations only account for 5-10% of all mutations. Most 
of the genomic testing companies only test for a few mutations and not all the important genes tied to many cancers, especially endometrial
cancer.  Foundation One tests for all the important genes tied to EC, and will include the genes for Lynch Syndrome as well as breast cancer. 
Also, there are many other genes tied to breast cancer other than the BRCA genes, some tied to EC.

A good article to read at www.pubmed.gov is entitled "The emergine Genomic Landscape of Endometrial Cancer." Oct 2013.  It details  the gene
mutations  (found with the different forms of endometrial cancer. It is an excellent article.  Once you get your F! results, you can compare it to this
article.  If you have mutations on the P13K pathway ( a few of the genes on this pathway are tied to USPC), metformin targets the pathway, and it
could be an option for you.  Most oncologist just don't study all the mutations tied to the cancers they treat and if they don't have a "cancer" drug
don't offer any alternative, when there are other options like metformin.

Takingcontrol58

pinky104
Posts: 574
Joined: Feb 2013

I'm glad to hear that you've already been through this and you're so knowledgeable about it.  I did mention both Metformin and Keytruda to the female PA at my oncologist's office, saying that I'd read on this site about how some of these other treatments had been working for our cancer.  The PA didn't seem to know about the Metformin being used for this purpose.  I'm sure my oncologist (and my GYN/onc at another hospital who did my surgery) are much better informed, although I'm happy with the PA otherwise.  She's been very thorough and answers questions well.  There is a huge amount of cancer in our area and my male oncologist is often pressed to get on to the next patient, although he's a hell of a nice guy.  I find the PA's spend more time discussing everything with me. Thanks for sharing all your knowledge with me.  It's really good to know!

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2728
Joined: Mar 2013

Pinky, my gyn onc was always late to the appointment, which I hated, and at a certain stage in my follow up I switched to the onc in the office.  Like you with your PA, I love having conversations with her and chatting about the things I read here.  I had asked the onc about metformin.  She said there were some interesting studies being done and it does seem to have some qualities to help fighting cancer that they are really just finding out.  

With that said though, it probably is not the 'wonder drug' for everyone as some of the ladies said it had no effect on their cancer.  Maybe it is like aspirin and how it helps with heart attacks, etc. I told a friend who had Stage 3 UPSC about metformin (she does not visit this page) and it did nothing for her when it was prescribed. 

In the end, we all need to be happy with our doctors, not be afraid to bring forward what we read (and see) and hope they are open to listening.  

 

pinky104
Posts: 574
Joined: Feb 2013

Yes, because we are all different, maybe whether it works or not just depends upon our genetics or other physical factors like our weight or maybe even if we are diabetic or prediabetic, although I know that's not always the case for when it actually works.  Some take it without that kind of status and it works for them.  Who knows, maybe some day someone will figure it all out. 

jzona's picture
jzona
Posts: 14
Joined: May 2017

TY everyone. This was a tough weekend.  My mom is very tired and weak.  WE are not sure if it is the chemo, or the cancer.  And she does not seem to be eating full meals.  This morning when she woke up, she fell :( Which is very concerning to me.  Any further thoughts?  Did this ever hppen to any of you, and then you were able to bonce back?? 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1642
Joined: Jun 2015

Being tired and weak is a very common side effect of chemo. And so is not being able to eat very much. For me, the things that I enjoyed the most were watermelon, baked potatos and black eyed peas. Sometimes a Frosty tasted amazing too. Don't be too concerned because chemo does a number to our digestive systems.  Your Mom's appetite may return a couple of weeks after each treatment. Mine did and boy did I make up for the times when I couldn't eat.

I hope this helps!

Love and Hugs,

Cindi

 

PS - Don't hesitate to call her doctor if anything seems off. They can give you ideas on things to help and also determine if she needs to come in.

MAbound
Posts: 1022
Joined: Jun 2016

The side effects of chemo are cumulative, so don't be surprised if the fatigue gets more pronounced or lasts longer as things move along. The loss of appetite kind of goes with that. I can remember a point where my body felt like a million pounds and it was too much to even sit up in a recliner chair for a while. It will get better, even if only for a couple of days before the next treatment. Rest and lots of fluids are the biggest helpers. Let her eat whatever she wants and don't worry about balance or quantity so much. Like Cindi said, there are usually a few foods that you'll find that she'll tolerate and like better than others. Mine were watermelon, yogurt, and green beans. I lost 30 lbs during chemo, but the appetite does come back when you're done. It's a rough ride, but it's doable.

vinitha's picture
vinitha
Posts: 3
Joined: Sep 2017

My aunt is suffering with ovarian cancer stage III-C.  She underwent three chemos and surgery scheduled on 28.7.2017 subject to respnse of disease to the chemos.  If the response is not as expected, surgery will be after 4th chemo.  If the response is satisfactory, surgery will be on 28.9.2017.  her report shows

Multiple Extensive variable sized solid cyctic lesions with calcifications in peritoneal cavity in omentum and pelvis

s/o.Disseminated peritoneal mets? ovarian

Metastatic deposits of papillary serous adenocarcinoma.

This is my aunt's status.  I am very much worried. Clinically she is responding well to chemos.  What will be her condition.

Apaugh's picture
Apaugh
Posts: 856
Joined: Aug 2016

All the different types of cancer we endure.  So many of us take simular medications and treatments for them and they all effect us differently.  So you have to be kind to yourself and listen to what your body is telling you to do.  Push the fluids, eat what you can and only as much as you can.  Get your veggies adn fruits and calcium and protien.  It dont have to be much,  Just try to eat balanced.  Water, watermelon, and cucumbers ae your friends..   Chemo goes in, waterpushes it out.   That is key.   Rest and try to walk around the block at least once a day.   Watch a comedy everyday and listen to music that soothes the soul.  It is so important to love yourself. 

Hugs,

Annie

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