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[TaraJov96]

Hello to all you beautiful and brave ladies! You have been such an inspiration and emotional support to me.

My name is Tara and I am 25 years old and I am writing on behalf of my mother who is battling MBC since 2019. I’ve been reading you for awhile but always felt stupid to write something since I am not the patient, but I am for sure living with the disease in some way. Now I know my post might be a bit overwhelming for all of you since I don’t really know from where to start and I have all these questions, but I also do want to give you an overview of her condition.

My beautiful mother, Tatiana, has been battling cancer for 15+ years. She had recurrence 3 times. Last time, in 2019 she learned her cancer came back and had spread on her bones and lungs. She was offered Verzenios by her Oncologist in Austria, which worked for about a year and a half, but during that time she suffered sever side effects.

Last year while she was in LA, visiting me, her condition got worse and instead of figuring out how could she get treated in the US, I had to send her back home. In December 2020, her meds stopped working, and her cancer made progress onto her liver and pancreas. Some of the lesions were removed from her lungs since they grew bigger. They decided to put her on oral chemo, Xeloda. On which she has been since then. They lowered her dose several times due to the hand and foot syndrome and currently she is taking 4x500mg, two in the morning and two at night for two weeks and then one week off.

A month and a half ago her hand and foot syndrome got really bad to the point she couldn’t stand on her feet due to having open wounds. The doctor advised us to discontinue the treatment until our next visit, which was 3 weeks ago. During the doctors visit we learned that the condition was stable, but were advised to wait two more weeks till she continues the treatment and to go from 2500mg daily to 2000mg daily, for two weeks and then a week off.

My mom originally started with 4000mg but now takes 1/2 of that does which we were originally told that would be too little for her. She just finished her first round, taking a week off. However, she’s been coughing for awhile now, even before her visit and scans, and it seems that now it got a little bit worse, and on top of it her bones ache her.

Could it be that the cancer started growing again? She had these moments before, and I aways wonder the same. But knowing they lowered her dose and that she was off meds for a month before that, I cannot stop but wonder if something might be going on. Although, it is very cold where we live right now, below 30 degrees and she is saying it might just be the way she responds to the weather. Naturally, she is much stronger than me, and I am always the one worring for her more than she does. She can endure a lot of pain, that’s why I am unsure if she might be hiding her pain away from me. Also, a month ago she got this severe pain in her leg and although we told the oncologist we worry it might be thrombosis, she assured us there was no way. However, my mom performed some tests and it turns out she has a blood clot of 8cm in her leg.

I would ask all these questions our oncologist, but we have a somewhat weird relationship with her. We actually go to Austria for our treatments but do not reside there, so the way we comunicate with the doctor is through the email, and only when we send the blood work, she made sure we do not bother her with other questions.

Would it be possible that the cancer started growing again? Or coudl it also be that its just the weather? Her next appt isn’t till February and I worry a lot. I also asked the oncologist why couldn’t she just put her back to the same dosage after her feet and hands get healed but she said she could’t do that.

I apologise for such lenghty post, although I feel like I haven’t even said everything I wanted, but I do appreaciate whoever takes time to read it. I guess I am looking more for your experience when it comes to pain and just few kind words. My love to all of you ♥️

[Hidden]

First off, welcome. Second, I am sorry you are in this predicament with your dear mother. Your devotion is wonderful.

You’ve raised a series of concerns. In order to answer your questions, it is helpful —for me at least — to understand other data points.

If I read your post correctly, you live in LA, your mother’s doctor lives in Austria, and your mother travels from an unidentified country to see her oncologist? Have I got that right?

Where does your mother actually live? Having all these “moving pieces” makes life complicated. Is there a reason that treatment is unavailable or unacceptable nearer to her home, wherever that might be?

It’s a terrible drain on person’s medical and mental health to bounce around and not have consistently reliable care near where she lives.

I ask because it sounds like you are concerned that your mother is receiving less than 100% commitment from the oncologist who will only communicate via email from a geographically remote location. Have I got that part right too?

If I’ve got these pieces right, it sounds like a change in the medical provider and better proximity to reliable care is an important next step. Although your mother has worked with this doctor before, inertia isn’t a good enough reason to remain.

The oncologist you describe is an unwilling communicator who unreasonably limits patient interaction to emails and does not timely answer important questions. That is unsuitable as a standard of care.

I want to believe you can find a better way. I suggest asking for a second opinion with someone who is more available, both geographically and in responsiveness.

A fresh set of medical eyes and a second opinion closer to home might be the best option. With all the challenges your mother faces, she deserves more direct, engaged, responsive oncology support

You’ve been so busy trying to help manage everything else that you may not have had time to step back & objectively wonder whether there is another standard of care that will serve her better.

Again, I’m sorry you’re here. Is there a reason your mother won’t look for another oncologist? I can’t tell from what I’ve read. You seem to suspect the current oncology relationship needs a change for the better.

Good luck with all this. Perhaps my questions help you assess whether you have more options than it feels like you did before you wrote this post.

We are here for you.

[TaraJov96 in reply to Hidden]

Hi Hidden ! Yes, you’ve got it all! And thank you so much for taking time to respond to me!

We are originally from Serbia ( Ex Yugoslavia), abd the heath system is pretty bad here. One of the reasons my mom’s mets spread to her lungs is that the doctors didn’t read her scans correctly back in 2016 when she had her regular check up (at that time she was “cancer free). The scan had already shown mets on her ribs.

Since 2019, we had several dissapoinents from the doctors here that just wanted to put her on morphium and chemo through IV, we refused that. Oh and on top of everything, they dediced that biopsy was impossible and the whole country has only one Pet CT scan for which she needed to wait for abouth a month.

So we decided to try to see if any neighbouring country had a Pet CT scan. Through out our friends in Austria we got a recomendation of this oncologist who was willing to take a look at her. That is how we started going for treatments/consultations to Austria. And I mean, they have an amazing health system. The hospital she gets treated at is one of the major ones in Europe which is also a research center for cancer treatments and it is only 6 hour drive (i know for her that is a lot more) from Belgrade, Serbia.

I’ve never liked her being treated there, not because it is bad per say, but as you mentioned, it is very difficult and drainkng for her to travel and not have a doctor close to her if something goes wrong.

Since I live in LA, I’ve always wanted to get her to get treated there but our family over there is not so reliable and willing to help. I know its coastly but I feel like we already spend so much money on traveling.

I tried signing her up for free insurance since she qualified through me, but it doesn’t give us many choices. And I personally know very little when it comes to how those insurances work. I only had mine through work and it was pretty basic.

Personally, my dream would be to take her to the states with me. I just spent a year in Serbia to be close to her, but need to go back to finish my last semester and get a job. She is better on my watch anyway, and I personally believe she has more oportunities over there.

The only thing is that I wouldn’t know from where to start.

[Hidden in reply to TaraJov96]

I wish I knew more about immigration law so I could be a better sounding board for you. It’s a real challenge as you explain it.

By being a devoted, supportive daughter, you are already doing a lot. Please always remember that

[MyMiracle13]

Welcome to this group Tara and don’t worry you are not the only daughter here asking questions on behalf of your mom. I’m sorry to hear that although the Xeloda is working, your mom has to stop it because of the severe side effects. What confuses me is when you said “we actually go to Austria for our treatments but we do not reside there.” Isn’t there an oncologist nearer to your mom’s home who she can consult with face to face rather than by email?

[TaraJov96 in reply to MyMiracle13]

Hi there MyMiracle13 ! Yes, that’s exactly what I meant. I explained in a little bit lenghtier comment above. Our country has a pretty bad health system, and in my opinion many people die from cancer because the doctors just do not have enough tools to treat them and do not care in some way either. Austria is not that far from us, it is a little bit less than 6 hour drive, and the road is pretty nice. But I do know it is always challenging for her, so i am pretty unhappy. I wish I could get her a better treatment in the US, but I am only a student and to be honest many people just scared me by saying “that won’t be possible.”However, I am willing to do anything for her

[mariootsi in reply to TaraJov96]

I would say try to figure out how to get your mom to California. Many amazing cancer hospitals there. She can apply for health insurance there. It's called Medical!

[jersey-jazz]

Dear TaraJov96------From your writings, it is obvious that you are a person of action. If you are a citizen of the USA, then move her quickly to the USA where she can get the help she needs. For all our faults, and there are so many, we Americans are positive minded. "All is possible.". This includes working out the money. If you are not a permanent resident of the USA but are on a educational visa and your mother wants to stay in her home country, can you set up a remote connection for her on the computer? She can be in contact with a doctor in Austria without having to travel nearly six hours, if that is what she wants and what you want. Please don't hesitate to work this one out with the help of this very opinionated group of which I am proud to be one. God bless you!

[Aquadog]

A warm welcome to our group, Tara - love the pic of you and your mom. You obviously have a wonderful relationship and major kudos to you for supporting her as you do. Not all cancer patients have that. Just so you know - we have several, if not many, caregivers posting here. Collective knowledge and experience are powerful and sometimes one piece of information or a new perspective can offer someone hope.

I'm sad to hear your mom has to travel so far for treatment. Does the oncologist respond better in person than she does in email? It might just be her personality. Can you ask for a different oncologist? I don't know if that's possible, but worth a try.

As far as pain goes, I think I'm a lot like your mom. I can handle a lot of it and honestly, sometimes I don't know if it's related to cancer, getting older, or the weather. I do trust the scans, though, and you indicated she was stable three weeks ago. That's good, but the cough is a concern. Is there any way to get an x-ray there in Serbia rather than a PET? Maybe they could rule out other problems first.

Being there for her helps more than you know. You're a wonderful daughter.

Sending hugs, hope, and love to you both

Susan

[Barb5]

Just a thought for you I have been battling metastatic cancer for 8 years and considering there is no cure for it I’m doing well one thing I do to feel better about the care I’m getting and the meds I’m on once a year I go for a second opinion and my regular doctor knows I do that and doesn’t mind a bit it makes me feel more in control of my options

[TaraJov96]

Thank you beautiful ladies for your support and encouragement! I had a busy week full of finals and no time to respond.

I am a US citizen and i do have a way of getting my mom to the California, but many people had told me that due to her preexisting condition, it will be hard to get her a private insurance and that it would be way too expensive. Dear mariootsi I heard not many doctors take medical anymore, and was convinced that i would be waisting my time.

Dear jersey-jazz we tried but the doctor does not want any other contact rather than in person, and she is the only oncologist that understands our language which makes communication much easier. For instance I emailed her the other day since my mom have been feeling tension in her chest and several other issues, but she is always too brief and says how she cannot do anything from far away. That is exactly why i email her so she could advice us either what to do from here so we could rule some stuff out and if needed travel to Austria. Unfortunately, insurance is no goo here, and Oncologist are the worst, it always seems that it is late and nothing can be done. This is why I am trying to see if we could possibly move her to the US (i am referring to having a good insurance with her ongoing disease). whenever I read all of your stories it just seems that there are many good oncologist who care for you to do well. You said it right! Americans are really positive! That is what I love about them and I am proud I became one.

Dear Aquadog thank you so much! I try to be. We do have a special bond, we are more like sisters than a mother and a daughter, like one soul. I’d do everything for her, not just so i can have her by my side, but because she deserves much better life than what she had for the past 25 years. Yes, she is a strong one, does nor give up! but as you said, the cough is our concern. We could do an x-ray, but we will see since she is going to a pulmonologist tomorrow. I just feel like her new PET scan is too far from now, February 8th.

Dear Barb5 you are an inspiration! I read several of your posts and I remembered you! My mom is definitely a fighter, I know she gets scared at times although she doesn’t show it. I think I am the one who is weaker, much weaker. Each time she is in pain I have the worst possible outlook, although I know in reality that it does not have to be the end and that if Xeloda might have stopped working that there will be another drug for her. There is believing and hope but also a tremendous fear.

Lots of love ❤️

[Klamato]

I am so sorry for your brave mother! I was diagnosed with 4th stage metastatic breast cancer! I have taken VERZENIO and now am on Xeloda, since there was activity in my last PET scan. I am wondering if they put your mom on Xgeva injections for her bones because they gave me these injections for more than 3 years and I ended up with 2 broken Femur bones and osteonecrosis of the jaw! These I am told by both surgeons ( dental and orthopedic) that this drug has caused this effect! Please don’t let your mom take that bone agent! That would be my best suggestion. Zeloda so far has been good for me so far, but I am having a PET scan next week and that will tell the story! Hang in there with Mom and hopefully her drug will help her maintain her cancer! It’s a terrible thing to go through and our kids suffer along with us because they want us so bad to live! My best to you and her! God bless you and her!