Linking you to resources and support in the lung cancer community!
My sister was diagnosed with stage IV NSCLC with bone mets 11-11. 25 radiations and several chemo. Latest scans say widespread bone mets with intramuscular nodules in several locations.Very minimal shrinkage of the lung tumor. They switched chemo treatment yesterday. She said they sound like this is the only treatment left to try after initially telling her this was curable. They told her after a couple treatment she "would be amazed at how much better she woud feel". She made an appt. to talk to the doc after several weeks of treatment to discuss that with him & told him "I don't feel better". The tumor is pressing on an artery which causes difficulty breathing. Telling the doc she was getting better to me should maybe be a sign that that treatment wasn't working so well but they stayed the course only to find much more spread & destruction. I'm less than thrilled with all of this but then I'm certainly not a doctor. I'm wondering about a 2nd opinion though she hasn't mentioned it and I know it's her decision. Is it too late? I feel like we've got a race against the clock & just lost in all of this. Obviously I just want her to have the best chance she can have. T
Thanks for any advice/input :)
1-2 years ago isn't a long time ago to quit, but that just has to do with who is most likely to have the mutation. There are many people who don't fall into these tidy little categories who may benefit from these drugs. If she's being seen at an NCI Comprehensive Cancer Center, it's more likely that mutation testing is done, but not guaranteed.
Do you know what the new treatment is?
I don't know what the first treatment was & I don't know what the current meds are. Hopefully I can get some more info soon.
Friday the doc said nothing further he could do, gave her 2-4 weeks & wanted to set up Hospice. Yesterday a.m. she was taken to the hospital by ambulance due to difficulty breathing. She has a lot of water retention in her feet/legs/arms/hands. Repeat chest CT showed no worsening chest tumors. She still has blood clots in her neck/arm that started the end of December. I found out the chemo drugs, 1st round Cisplatin & Alimta, 2nd round was Carboplatin & Gemzar which she only got once since it really wiped her out. Her platelet count today was 16 which is the highest it's been since this last chemo 2.5 weeks ago. They have given her platelets & plasma several times in the last 2 weeks. They sent a doc for 2nd opinion. She seemed very knowledgeable, had been thru her chart/records & sat in the room with nothing written with her & rattled off her diagnosis/biopsies/treatment/etc. like she had been treating her from the start! Due to this forum, I asked about Tarceva (thanks to Amy & someone else who posted a whole thread on this). She said she has to get her platelets up to 70 or 80 before they could try it. They just sent tissue from the original biopsy to the lab 2.5 weeks ago to check for the EGFR mutation. I mentioned some on the board don't have the mutation but this med still helped them & she said she could try it either way if the blood count gets up but there's higher success rate with it if you have the mutation. She said about 25% of people without the mutation will get help from it. We are still in a huge danger zone but at least this news is better than the 2-4 weeks scenario we got a few days ago. She liked this doc & that is awesome too! Thanks so much to everyone who posted about this drug - it gives up some hope :)
Labs came back - she does not have the mutation so there's a 25% chance Tarceva could still help her. Saying prayers & waiting for the platelet count to go up!
Update: whatever the new chemo was, it really knocked her for a loop. I'm taking that to mean it also kicked some major cancer butt too! She had to get fluids for 2 days in a row, platelets at 2 - sent for blood, next day platelets at 0 - sent for more blood. She was only able to work 10 hours last week but I don't know how she pulled that off. They cancelled chemo last Friday. She had an appt. Monday but I haven't been able to connect with her yesterday or today so I don't know what the plan is.
Thanks for the update! Hopefully she will feel better and the chemo will keep working at the same time!
The plan is treading water. Bloodwork every other day. No more treatment until her blood levels get straightened out. She's really not feeling well & hasn't been able to work this week. I'm just saying prayers & waiting for some good news!
Update #2. She was at the doc's Friday for more bloodwork - platelets are at 8. They said there is nothing further they can do & want to set up Hospice. They said she has 2, 3 or maybe 4 weeks. I don't understand what they are basing this on. They did the new chemo 2 weeks ago & have done no further testing other than blood tests so how do they know it isn't working? She has swollen feet/ankles so much that they are shiny (I'm getting worried about cellulitis), water pill isn't doing much, she had been on a blood thinner up until about 1.5 weeks ago (for the previous blood clot in her neck) when they stopped it & she said her stomach & back all looks like severe bruising from bleeding under the skin, the last new thing she mentioned to me is that she's been having some vision problems which concerns me for brain mets. The last PET scan they did they did not include the brain & we don't know why or if that's normal procedure & she was really concerned why they didn't look & probably even more so after getting the results of so much cancer spread/worsening cancer. She has another appointment tomorrow. She's supposed to have made her decision if she wants to set up Hospice or not. What does that mean? If you set up Hospice does that mean you are no longer seeking treatment? Or, does that just mean they help you to be comfortable & you can still get treatment? We did finally talk about a 2nd opinion. She sounds like she wants to do it & her case worker had suggested she go to IU (Indy). So I think that's the next plan. At one point she said, "maybe it's too late" & I said "it's not too late...you're still here & I'm not throwing in the towel"! Thanks in advance... you guys have helped me understand some things, given me hop & a place to talk freely. I appreciate all the responses. Sending prayers for all those in need :)
One other piece I forgot to mention, 2 weeks ago they resent some tissue to the lab from her original biopsy to retest it. They did 2 biopsies initially as they had a hard time determining which type cancer she had. Now she wonders if they misdiagnosed a small cell instead of non small cell since she had so much spread on her last scan. On the other hand, cancer cells multiply so fast & can break off & spread to other parts so who knows until the results come back. Friday when she got the bad news she was talking to the nurse practioner who said she was going to get the doc & be right back. She was gone, came back - no doc & the NP gave my sister the news of nothing more they can do & her 2-4 weeks prognosis. She said she felt like her doc deserted her which is really sad.