What we can do..?? Please advise !!

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sharmal
sharmal Member Posts: 55
edited September 2018 in Stage IV/Metastatic Breast Cancer ONLY

Hello everyone,

I am here for my mom (62 Years). I have been here on this wonderful community and seeking help and advise for my mom's disease. You guys really helped me to understand my mom's disease.

She has been treating for MBC since last 3 years, The disease is in lungs, bones and liver. I am writing to seek advise on my mom's current situation as we are not very sure, which direction we should move.

My mom was advised Faslodex 25 days back, she had D1 & D15 Shots. Since last 12 days, things have changed quickly for her. She fall short of breath and almost immovable herself as it takes lot of efforts to even stand up, she is not able to sleep in night, and feel comfortable in sitting position. She needs wheel chair to move from one place to another. Her appetite is also down suddenly (don't feel to eat much). She is very fragile. We had showed to pulmonologist and CT chest showed issue with consolidation region of left lower lobe of lungs. She is on antibiotics and we will visit pulmonologist again to check the next action.

I had also discussion with her ONC, but he said that we have to hold or stop the chemo/faslodex till she overcome this situation as her body won't be able to tolerate the medicines. He was also doubtful about things to get better with antibiotics treatment. He suggested supportive care looking at the current situation.

My mother has tried numerous chemo/oral medicines since last 3 years but nothing stayed more then 6 cycle. Our ONC never considered the repeat of medicine during this time. Can any one suggest on this??

It is hard to face such situation when we don't see much hope ahead, but i want to be there for mother always. She is the strongest lady i have ever seen in my life. I am heartbroken.

Prayers and hug.

Best regards,

Lalit.


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  • tinyturtle
    tinyturtle Member Posts: 34
    edited July 2018

    Hi Lalit -- I'm so sorry things are so hard for your mom and for you right now. I've only been dealing with MBC for a year now and I'm not as knowledgable as many other folks here. I hope somebody shares some helpful advice with you.

    The most important thing you can do is love, love, love her -- and make sure to get help for yourself. When I was caring for my grandmother, it took 4 of us to do the job and I still had to let go of much of my regular life. It was the most important thing I've ever done. I know you feel the same and you seem like an amazing daughter.

    Just wanted to send you love

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  • sharmal
    sharmal Member Posts: 55
    edited July 2018

    tinyturtle, Thank you so much for your love and words. My mom has lovely daughter as well. She is married to the same city where my home is. She is taking care her with so much warmth and love along with my 2 brothers. My mom is lucky to have all her close ones near to her. I am her youngest son.

    Prayers and love for you.

    Regards,

    Lalit.


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  • CCampbell2446
    CCampbell2446 Member Posts: 4
    edited July 2018

    Oh my gosh, my poor mom is going through the same exact thing Sharmal. We’ve been in the hospital for 26 days now. Had to drain right lung, lost appetite, can’t move much at all, everything in pain, oxygen levels low, anemic, all sorts of stuff. We just started using Faslodex 4 weeks ago but all of the symptoms I mentioned were already in place. Hoping and praying the Faslodex will shrink some of the tumors to help her get her life back. I am the main care taker and she’s my best friend in the world. Please keep me updated on anything you find out. Going through such a scary and hopeless time. Leaning on the Lor

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  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited July 2018

    Lalit,

    Faslodex is not a cytoxic chemo, so there should be no reason to hold it if your Mom is in a weakened state. It is an anti-hormonal, and to the best of my knowledge, has no cardio-pulmonary contraindications. It's gentle stuff.

    It sounds like the big problem right now is your Mom's pulmonary condition. Judging from what you have written, it is either pneumonia, lung mets, or a pulmonary embolism. It sounds like your Doc is going with a pneumonia diagnosis, as he is prescribing antibiotics. But, have you discussed a possible clot scenario? Do ask, as if she is clotty, she will need to be on a blood thinner.

    Sometimes the liver can enlarge enough, due to mets, that the diaphragm will be blocked, and your Mom will feel like she can't get a full breath. This liver enlargement could also explain her lack of appetite, as it is crowding her digestive system, so she might feel full after just a few bites. She might also need some supportive oxygen, till the lung issues are improved. It will relieve her anxiety caused by air hunger.

    I have lived/am living through all these scenarios, with the exception of lung mets. It is very important that she remain on treatment, as the Faslodex takes some time to get going, and your Mom doesn't have spare time, right now.

    Get a second opinion, if you feel they are writing her off due to her age and fragility.

    You need to get in there and be a HUGE pain in the rear for her. It might not feel comfortable, but needs must.

    Keep us posted.

    Jennifer

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  • sharmal
    sharmal Member Posts: 55
    edited July 2018

    Jennifer, Thank you so much for your guidelines. I went to have second opinion from another ONC in my city where I live. Mom is not at all in condition to travel to my city as we are 1000 kms away.

    This ONC listened me patiently and I had described him all the treatment details in past 3 years. For pulmonary issue he highlighted the possibility of blood clot scenario. He also told us that Faslodex is not a chemo medicines and they should not have any toxic effect on body.

    After 7 days of antibiotics dosage, my mom went to see her local pulmonary Dr. She had x ray and sonography of chest. He said that the issue remains same in lung consolidation region and did not reduce. Although he also said that nothing is increased either. He suggested the antibiotics for 7 days more if it has any benefit? The pulmonary is suggesting bronchoscopy next if situation does not improve in lungs. But we are doubtful and divided in family whether we should go for bronchoscopy or not? It looks scary to perform with local anesthesia.

    We did the blood test to check the possibility of blood cloting. We are awaiting the report.

    There is one thing which i want to highlight. For pain relief, the local oncologist suggest fentanyl patch.

    We are using 25 mg patch whenever the pain in not controlled with Tramadol oral tablets. Does it have any severe side effect on body?

    Prayers and hope for everyone.

    Regards,

    Lalit.


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  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited July 2018

    Lalit,

    Hopefully the bloodwork will answer some questions. For lung mets in breast cancer, I am not familiar with it presenting as a single larger mass. Usually, we BC folk get a ground glass appearance to our lungs, or some nodules. But, I am not a medical professional, and I have no experience with lung mets. I'd be inclined to wait on the bronchoscopy too. It's bound to be uncomfortable, and unless it is medically necessary to have the information NOW, other - less invasive - tests might be enough. How is her breathing, and when she is measured for oxygen saturation, what are the results?

    All opiate based pain relievers can have constipation as a side effect. That can make the patient uncomfortable, and lead to some bowel issues, so keep an eye on it, and stay handy with the fiber tablets, stool softeners, and laxatives as needs be.

    It is so nice to have another person involved with one's medical process. At times, I get very overwhelmed, and it's nice to have the spouse there, taking notes and keeping track of things.

    All the best,

    Jennifer

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  • sharmal
    sharmal Member Posts: 55
    edited July 2018

    Thank you so much Jennifer. I am traveling to my home city tonight and will be there for next couple of days. I will let you know more updates. Right now we all are trying to keep her spirit up and hope that she gets to eat better.

    Take care.

    Lalit.

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  • sharmal
    sharmal Member Posts: 55
    edited July 2018

    We got the various results of blood work. The D dimer number is 6.5 and we checked this with pulmonogist. He said that if it comes negative and very low then we can conclude surely for that issue is due to blood clot. But in my mom's case it is very high and positive so there may be multiple reason for this. To confirm further he suggested to conduct 2 d eco and CT pulmonary angiography. Right now my mom creatinine is 2.3. My mon oxygen saturation is above above 90 and mostly remain 95. But her pulse is above 100 and when she put extra effort to get up and sit down it goes till 110 also. Her hgb is 8.7, platelets count is 159.

    I hope that soon we overcome from this confusing situation. Currently my mom is not very comfortable going to test further. I hope that she gets some strength and will power.

    Hope ans prayers.

    Lalit.



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  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited July 2018

    Have they ruled out tumor cells in her lung arterioles? A chest xray and CT scan will not show those tumor cells. A VQ scan will indicate an embolism ( blood clot or tumor emboli). VQ scans test for lung perfusion. The gold standard is a lung biopsy, but sounds like she is too sick for that procedure.

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  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited July 2018

    Lalit,

    Just checking in with you guys. According to my nurses, it's heart healthy that one's pulse accommodates extra effort. When I was crashing from my last round of Doxil, I was really short of breath, so they made me walk up and down the hall with the O2 meter on, and pronounced me "OK" because my heart rate elevated to compensate for the shallow breathing (from a frozen diaphragm, thanks to rib mets).

    If she has lung emboli, they should show up on the CT, but you will have to make sure the radiologist doesn't confine themselves to findings from cancer only. Make sure they look for everything. I am astounded at some of the stuff my Oncologist hasn't brought up to me because it wasn't strictly cancer-related (heart arrhythmia, wonky EKG reading, fricking pulmonary emboli).

    Hope you guys have found more clarity.

    Jennifer

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  • rameshd33
    rameshd33 Member Posts: 24
    edited September 2018

    Did they rule out pleural effusion

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