Now that he's dying, doctors don't want to help!

[jhocno197]

My sweet husband is dying (not like in the next couple of days, but he's losing weight like crazy and still experiencing tumor growth/spread unless the stivarga is working an extremely impressive miracle. No other options). Last Monday, he picked up our toddler, and felt a tear right next to where the tumor is (you can see his tumor, so we know right where this part of it is). He was in agonizing pain from it for a couple of days (and is already on extended release morphine & taking hydrocodone). Saw the oncologist Wednesday, he just told him that probably something tore -didn't do anything for him. The agony has subsided slightly, but he is in constant pain from it still. He went to a different doc today, who basically said the same thing, and that probably no one will be willing to do anything. She did at least order an xray (not sure what good that will do, since if he tore or ruptured soft tissue, that is unlikely to show on xray).
It's like they have washed their hands of him...

Just needed to vent, I guess.

[midlifemom]

So sorry to hear.
No others words will do.
Not fair, butt we already know life's not fair.

[PainInTheAss]

That's gotta be so frustrating and disheartening.

I'm so sorry you're going through this.

[Nik Colon]

So sorry

[Travelgirl]

I am praying for you and your husband.

So sorry And I understand. The same happened with my mom.

Stay strong for your husband and make feel as comfortable as you can. It is hard as it was hard for me with my mom..

God Bless

[surfingon]

Strongly suggest that you ask for a referral to the palliative care team. Our experience was that we had to ask/demand a palliative consult; it was not a concept that seemed to be part of my husband's oncologist's toolkit. Palliative care focuses on optimizing the patient's quality of life, using a much broader spectrum of approaches that may often involve alternative therapies. We found that the palliative care mindset was light years away from the oncology mindset. Palliative care doctors and nurses are generally way more skilled in pain control that the typical oncologist. The focus on not just the physical being, but emotional and spiritual aspects as well.

That sense that the oncologist/ surgeon is just throwing his hands up because he doesn't have anything else to offer was very familiar territory for us, as I suspect it is for many cancer patients. Oncologists offer chemotherapy-- that doesn't mean that there are no other possibilities when chemo no longer works. It just means that the oncologist likely doesn't know a whole lot about what else is available.

Best wishes for more open doors and greater peace of mind with a palliative consult,
Rachel

[mariane]

I am so very sorry!
I also think you need to contact palliative team to find proper dose of pain meds.
Maybe a clinical trial?? Xylonix?

[KElizabeth]

So Sorry.

[Cathie]

So very sorry

Cathie

[janklo]

Definitely go with palliative care! Your husbands pain can be managed at home, he can have home health care/hospice nurses to come out.

[jhocno197]

Thank you all for your kind words & advice.

We did finally get a doctor to figure out what happened - he has a hernia that they can't fix because the tumor has grown into it. They have adjusted his pain meds, at least.

We will have to bring up palliative care at some point, as no one else seems interested in bringing it up. I will have to talk to him about it and see what he thinks.

On a positive note, at least for now the Stivarga is helping; after 10 days, his CEA had dropped some, so that's something, anyway!!

Again, thank you all!

[midlifemom]

So glad to hear!

[ANDRETEXAS]

Prayers sent to you and your husband. I hope the Stivarga continues to be of benefit along with the pain medicine adjustment. Hope and prayers are sometimes the best we can do at times, and I hope both give you and your husband peace and improvement. Andre