In the dark and terrified

moonelixir

Hi everybody,

My mom, age 78, was diagnosed with MBC at the end of May. ER+, mets to liver and widespread bone mets. She had no symptoms other than worsening back pain; her GP sent her to physical therapy. It was only after episodes of vomiting which she had thought was a stomach virus that a blood test showed raised liver enzymes, and then further testing showed spots on the liver. She was referred to oncology, where it was determined this is probably the same breast cancer that she had surgically removed in 2016. It was a 2 mm lesion, and she was given Tamoxifen, and was just about to be declared in remission.

She started with Fulvestrant and Ibrance in early June. Did five days of radiation which immensely helped the back pain. Things were looking promising. However, in mid September her oncologist saw high red and white blood cell counts, and said she had to start chemo. She started Xeloda - two weeks on, one week off. By the end of the second week, she was having severe diarrhea. At her oncologist's appointment on October 7, her onco had her admitted to hospital due to low blood pressure. It turned out this was caused by a UTI caused by the diarrhea. They gave her IV fluids as well, and released her home on October 10. Since then, she has complained a lot about severe fatigue. Her oncologist went on vacation October 8 and won't return until month's end.

On October 12, she was called by the surgeon's office to say they were putting in a port for chemo. This was a huge shock to her and me both. They said she had signed and agreed to it in the hospital, and she says she was so weak and dehydrated she just didn't remember. They are switching her to Taxol, she learned the next day from the nurse's assistant at her onco's office. She's been so discouraged since then, from the fatigue, the difficult digestive symptoms (the diarrhea is gone but it's still remaining challenging to know what to eat, when, as not to cause symptoms) and complains a lot about exhaustion.

Early on, when I talked to her onco, she told me the median survival rate from diagnosis to death was four years. Now, I'm worried that we're looking at less time than that.

I know that no one but her onco can give me a better picture, but in the meantime, I'm just devastated. Is it normal for the disease to progress in this way? Does this look like a quick path to decline or is there hope of at least another year?

I cannot go to be with her until November 8 due to the border closure (she lives in the U.S., and I live in Canada), and I am just scared to death. We haven't seen each other in 18 months because I have severe asthma and secondary immunocompression from corticosteroids. I really want to go be with her, and am just heartsick right now. Are that many treatment changes and severe fatigue par for the course with MBC, or am I soon to lose her? I'm heartbroken that she is suffering so.

jhl

Oh Moonelixir,

I can hear the despair in your post. I also took care of my mother from a distance until I could move her closer to me. She has since passed but I remember those days. First, has she had her port put in? Second, does she have someone to care for her here in the US? Do you have good communication with the caregiver who is here in the US? I think the first thing to try to attempt is to make sure your mom is cared for and has someone who can help her with daily living - meal prep, bathing, dressing, transportation to Dr appts. Has she put you on her approved list of persons who can inquire and receive information on her care? In the US that is important so you can be involved in decisions. Finally, is she able to slow down and recover from her hospitalization and GI issues? Perhaps she needs help to just say I want to wait until my daughter arrives.

I wish you and your mom the very best. Stay in touch.

Jane

Moderators

moonelixir, Welcome to Breastcancer.org. We're so very sorry to hear all your mom is going through. This is understandably heart breaking for you to have to watch this happen. As you can already see, there's a lot of great people here providing support and information and we hope you're finding what you need from our boards, like advice, information, or finding that you're not alone.

Best wishes. We're keeping you and your mom in our thoughts!

The Mods

Chicagoan

Moonelixer,

If I were your mom, I would seek out a second opinion and probably switch oncologists. It seems that decisions are being made for her, instead of with her informed consent. Is she at a NCI designated cancer center? If not, does she live close enough to one to make an appointment? You can search here:https://www.cancer.gov/research/infrastructure/can...

Would she want you to be present at her appointments through Facetime until you can visit in person?

Like jhl suggested, perhaps she can slow down, continue with Xeloda-perhaps at a reduced dose until her oncologist returns or she seeks a second opinion, before getting the port and switching to Taxol. Perhaps the switch would be for the best but without a proper explanation, it seems like a drastic move.

FYI-I am only 63 but was very sick when I started my treatments. So far, I have just been on Ibrance/Letrozole but have had five good years. I hope that your mom can find a treatment that she can tolerate and that is also effective.

I know it must be frustrating to be so far away until November but in the meantime you can be supportive just by being a listening ear for your mom and also helping her to find a doctor for a second opinion if that is what your mom wants.

Peace to you and your mom.

moonelixir

Hi and thanks so much for the support and incredible perspectives.

The port is being put in today. We did talk to her doctor's office and the other rationale for putting it in is to save her veins, because there are weekly blood draws. The part I don't understand is that at one point, she had a choice to move to a lower dose of Xeloda or do IV chemo, and I don't understand the rationale for the switch being made. It seems like it's to save her stressed digestive system since the Xeloda was clearly the cause of the diarrhea, but I don't have a medical degree, so all I can do is speculate. You've convinced me that I do need to call the office and speak with the nurse's assistant, because that part is the part that worries me the most - this doesn't feel like it was an informed decision or one that was made by her with a clear mind.

She has immense support from her neighbours, best friends in the neighbourhood, and her church. Her across the street neighbour brings some of what she and her 93-year-old mom eat (which is very cancer friendly - bland and digestible foods) every single night, and helps with anything she needs help with. She's able to get around the house fine, for now. When my dad was at the end of his life with kidney disease in the early 2000s, the house was retrofitted with an adaptable shower and other modifications for reduced mobility which are really saving the situation right now.

She is thinking about home health care and we are both thinking about how long she can stay at home. She is indeed able to rest and recover from the hospitalization and GI right now, and I am on the list of persons who can be in touch with medical staff about her care. Her oncologist is wonderful, and highly rated, but I think the timing of her vacation and the communication between the office and the hospital was really poor on this episode.

The closest NCI centre is Charleston, a six-hour drive, but I love the idea of attending appointments through FaceTime or Zoom. My mom doesn't have a cell phone and is very techphobic, but her onco would probably be able to manage that.

I so appreciate the support, the perspectives, the ideas and the confirmation that the Taxol move is a bit of a drastic curve ball. I will report back over the next week and a bit.

Thank you!

moth

one thing I would add is that normally oncologists prefer to not switch treatments unless the treatment has actually stopped working, or if the side effects are completely intolerable and unmanageable.

So it seems to me like they dropped the xeloda because it caused diarrhea but without a dose reduction or trying out other medications to prevent the diarrhea or different anti-diarrhea protocol that might have been premature...

Taxol is not the easiest of chemos either.

Has she had scans recently to monitor the progress of the disease?

moonelixir

That's my sense too. I had understood (and so had she) that the Xeloda dose reduction was the next step. I know that they tried the Lomotil protocols with no results. The most recent scan was in mid September and showed additional spots on the liver.

I am also concerned about Taxol being very rough on her, and I don't understand if there is a possibility of going back to Xeloda after a short course of Taxol, or what exactly the reason is for the move to Taxol beyond possibly fewer GI side effects or to more aggressively get at the liver mets.

The more you all respond, the more I realize I had better talk to someone, as there is clearly missing information.

moonelixir

I just spoke to the nurse's assistant. The reason for the switch to Taxol is because the tumor markers (CAT 27.29) had risen greatly, and the Xeloda was untenable at the dose that could have been effective. In other words, there was a risk with the Xeloda being maintained that the cancer could grow more quickly, but the high stage diarrhea that didn't respond to high doses of Lomotil was also a danger.

I asked for an onco callback when she returns from vacation on Monday and the nurse thought attending appointments by phone/Zoom/Facetime with my mom would be possible somehow, or else that the onco could call me after each appointment.

I'll share more as I learn it. Thanks so much for being there.

Chicagoan

Moonelixer-I'm glad you got some answers. Now the change makes sense. I hope that your mother will do well on Taxol. A lot of people have.