Doctor Recommends Hospice, Should I try another Clinic to see if there is a Second Option?

[KanbeZ]

Hello everyone,

A little background first, my mother is 49 and was diagnosed with NSCLC Stage IV back in March. By that time, cancer already spread to her brain, and the neurosurgeon did surgery to take the tumor out of her brain. She does not have any mutation for the targeted therapy.

Now, She just finished her third set of Chemo (Keytradand+Carboplatin+Alimtathe) and the first section of her lung radiation. However, my mother claims she has shoulder pain, I take her to the ER. Now they found a new tumor on the left rib and sinusitis. The doctor in the hospital tell me to go with hospice because he believed there is no other medication she can take. 

Another thing is, that she has been doing blood transfusions because her platelets counts are low. I think this is also the reason why the doctor recommends a hopice? 

Does anyone here have had the same situation before? Did you go with the path of hospice or if you first tried to go to another hospital to see if there is any other option? 

Any recommendation would be appreciated! Thank you in advance!

 

 

Update 10/9/2022

My mother passed away on 10/7, she was passed in the hospice house and seems passed very comfortable.

I was making plans to take her to the clinic trial but she did not make it before she passed. 

Thank you everyone for support and reccomendation.

[Rower Michelle]

It’s always and good idea to get a second opinion.  It’s also important that to honor your mother’s wishes in terms of what she wants relative to how she feels.  Some times additional treatment may have unintended consequences so it’s important to ask about treatment toxicity. 
 

When my mother’s team initially  recommended hospice no one in the family wanted to accept the recommendation but she wasn’t eligible for any clinical trials or compassionate use.  
 

If there is a social worker in the clinic, that could be a good resource in helping to guide the decision during a difficult time.  
 

I’m very sorry your Mom is going through all of this.  It’s a hard situation.  Let us know what you both decide. 

[Tom Galli]

Kanbe,

Welcome here and very sorry to learn of your mother's condition.

Here are my views on your mom's condition. I believe the ER doc's suggestion for hospice due to low counts is premature. Many of us experience low counts during chemo and often we take drugs like neulasta and procreit to boost our red and white cell counts. I'd ask your mom's medical oncologist about these medications to address your mom's low counts.

The new bone met is troubling but I'd consult with a radiation oncologist to see if precision radiation can zap that met. This is a common means of dealing with bone mets.

I think hospice is premature based on what you've told us. Speak to your mom's medical oncologist about drugs to boost her platelet count and broker a consultation with a radiation oncologist to see if precision radiation can zap the new bone mets.

Stay the course.

Tom

[Judy M2]

Everyone has give good advice. Has your mom had a new biopsy done (tissue or blood) to determine if a mutation is causing this progression? I would want to explore that as well as any clinical trials if your mom was agreeable. Hospital doctors refer people to hospice too quickly in my opinion. 

[KanbeZ]

17 minutes ago, Judy M2 said:

Everyone has give good advice. Has your mom had a new biopsy done (tissue or blood) to determine if a mutation is causing this progression? I would want to explore that as well as any clinical trials if your mom was agreeable. Hospital doctors refer people to hospice too quickly in my opinion. 

Hi Judy,

Thank you for your suggestion! 

When my mom got a negative result in her initial mutation test (back in May), my mother's oncologist says the mutation test is a one-time thing and it won't change in the repeated test. Is this true? Do you recommend I go to another oncologist and request a mutation test for the second time would help?

 

Thank you in advance for your reply!

 

 

[Judy M2]

Mutations can change, and new biomarker testing is now routinely done when progression occurs. I hope you'll get a second opinion, even a virtual one. 

[BridgetO]

Hi KanbeZ, I'm sorry to hear what your mother is going through.  I think a second opinion is a good idea. 

[Kamoto]

None of this makes sense to me.  Stage IV and they did brain surgery?   I have a pencil eraser sized tumor on my brain, and Bozeman MT health system as well as Mayo Clinic In MN both said they wouldn’t touch the brain tumor.  Is it true that there is no bio marker?   Didn’t know that could be possible.   What hospital system are you at?   There is a great cancer center in FL.  I’d go there pronto.  Surgery with stage four is bad.  You flood the blood system with cancer cells and potentially wake up dormant cancer cells waiting on organs with no evidence of disease.  

[Kamoto]

Go to Moffitt right in Tampa for an urgent 2nd opinion.   https://moffitt.org

[Good Bro]

On 9/20/2022 at 6:14 PM, Kamoto said:

None of this makes sense to me.  Stage IV and they did brain surgery?   I have a pencil eraser sized tumor on my brain, and Bozeman MT health system as well as Mayo Clinic In MN both said they wouldn’t touch the brain tumor.  Is it true that there is no bio marker?   Didn’t know that could be possible.   What hospital system are you at?   There is a great cancer center in FL.  I’d go there pronto.  Surgery with stage four is bad.  You flood the blood system with cancer cells and potentially wake up dormant cancer cells waiting on organs with no evidence of disease.  

 Kamoto, it does make some sense... it's just not typical.  If you think about it, all cases where they have done brain surgery to remove a tumor would be Stage IV, just from the fact that it has already spread to the brain.  I think the decision on whether surgery is an option is solely based on the size of the tumor and its location in/on the brain.  As for no bio markers... it just means that none of the ones that were tested for were detected.  My brother had the same biopsy results.  

Having said all of that, KanbeZ mentioned that her mom finished her "3rd set" of chemo combo.  I don't know if that means 3 rounds of treatments of that combo or if she's on her 3rd line of treatments with different drug combos.  If it's the former and only tried that combo, then it is definitely way premature to be considering hospice at this point, especially if her performance level is decent.  Even then, I would be looking at clinical trials.

[KanbeZ]

Hi everyone,

 

Thanks for all the comments and recommendations. I really really appricate it.

 

My mother passed away October 7th, 2022, no pain and she seems passed very comfortable. 

 

Again thank you all for the support.

[BridgetO]

Kanbe, I'm so sorry for the loss of your mother. I'm glad to hear she had no pain and seemed comfortable. ill be thinking of you and I wish you peace and comfort.

Bridget O

[Tom Galli]

Kanbe,

You have my sincere condolences. 

It is comforting to learn that hospice care benefited your mother. That is important knowledge.

Stay the course.

Tom

[Good Bro]

So sorry to hear this.  So, so young.  Very glad that hospice was able to comfort her transition.  This disease is so horrible.  

[Karen_L]

Oh, @KanbeZ, My sincere condolences on your loss. Thank goodness she had no pain when she passed. May you find peace in your memories of her.

[Judy M2]

I'm so sorry for your loss. Thankfully she was not in pain at the end. My condolences to you and your family.