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Living with lung cancer - Introduce yourself & come say hi
Lung Cancer | Last Active: Mar 28 9:04am | Replies (1142)Comment receiving replies
Hello! I'm Jess..my boyfriend was diagnosed with stage 4 lung cancer almost one year ago. He slipped and fell on a patch of ice in February of last year and in March after an X-ray for fractured ribs we were called in to be told he had a big mass in his right lung and that he had stage 4 lung cancer. He is 51 yrs old...his lungs are also completely full of inumerable amounts of nodules they said literally hundreds of them...the cancer has spread to the other lung and in his lymphnodes in the middle as well. So chemo and immunotherapy started quickly after we found out and it was going well through the summer into the fall the cancer had not grown or spread. He only has one kidneyand this winter the chemo was attacking his kidney and it had to stopped...so just continuing with immunotherapy I believe keytruda? He's sicker seems like he has pneumonia type symptoms all the time sweating nauseous uncontrollable cough and extreme amounts of phlegm. The oncologist is agitated because sometimes he doesn't want to do treatment and because when he gets really sick and other people in the house have bad colds or flu type symptoms palliative care says go to the ER...then he gets reprimanded for doing so...isn't it his decision about the treatments and what he wants to do? We see the lung Dr Thursday and he's already been seeing palliative care the entire time so he wants to stop treatments and just control symptoms for awhile and see how it goes. His oncologist threatened to kick him out of being seen there because we had gone to urgent care, the ER and took advice from palliative care......that just seems so weird to me....anyone have thoughts on this....sorry so long I'm just kinda going through this just him and I and it's a lot! Thanks for reading❤️
Replies to "Hello! I'm Jess..my boyfriend was diagnosed with stage 4 lung cancer almost one year ago. He..."
@dunsmorej54 Hi. I’m newly dx’d with lung cancer and waiting to see oncologist. However, as a former medical social worker, I have thoughts. Consider getting 2nd opinion and/or different oncologist. The oncologist should be supportive, not derisive. It’s your boyfriend’s body and he has a right and duty to himself to do what he feels is right. The oncologist should be clear on expectations or rules if there are some. Like not going to Urgent Care? It’s ok to advocate for yourself and boyfriend. If it doesn’t feel right, it probably isn’t.
@dunsmorej54,
Hello, I’m sorry you are going through this g through this. Does your husband take prescription anti nausea pills to curb the nausea? They helped my husband tremendously and also noticed if he has something light in his stomach to absorb some of the stomach acid, it helps too. The trick is to take the pills BEFORE he gets sick. First sign of nausea. Also, there are other immunotherapy medications out there. Has the subject of switching come up with his oncologist? You can always get a second opinion and weigh the difference, if any. My husband takes Tecentriq ( Atezolizumab) and had it along with his chemo treatments and the doctor kept him on same one. He’s only had 1 immunotherapy treatment alone so far but had zero side effects. Everyone is different so maybe a switch would help?
Ultimately, it is your husband’s choice on whether to do treatment or not. Palliative care would mean he steps back from treatment all together and they would intervene to treat side effects from the cancer effect on his body. I don’t think it is something you can do for a time and then go back to treatment.
I know this disease STINKS and I hope you both can find peace in the decisions and journey that is before you. Sending you HUGS!!,
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@dunsmorej54 , I just want to give you a hug. It's hard enough to manage this disease, without this type of additional pressure and confusion from his care team. Keep in mind, I'm a patient too, with no clinical training or credentials. 🙂
- Do you know if he had any biomarker testing completed when he was diagnosed? Looking for EGFR, ALK, KRAS, etc? I was diagnosed at the age of 49 and learned that many people that are diagnosed at a young-ish age may have mutations that are driving the cancer. This can impact treatment. I'm 55 now.
- Is he able to request a different doctor at the same cancer center? Having a doctor on your side that believes in you, and that you believe in, is not just important, it's your right. My guess is that you aren't the only ones that have had an issue with this doc.
- Is your BF open to a second opinion from a different cancer center altogether? When I've had potential progression, I've had other oncology teams look at my case, and I've never regretted it or felt like it was a waste. Information can be lifesaving and it's helpful to have another perspective. Here's a link that can help find a site designated as a national cancer institute: https://www.cancer.gov/research/infrastructure/cancer-centers/find