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Treatment not working
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 :)
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Replies to This Discussion
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Permalink Reply by DavidatpMOD on
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Hi and welcome to the lunglovelink web site. It's a great place to share information. I'm not a medical profesional but a patient with a good biology and chemestry background. Can you give us some more timelines for the treatment she has had. It seems that it may be too soon to really say that the chemo and radiation haven't worked if she was just diagnosed in Nov 2011. Sometimes it takes some time before the results start to show themselves.
It was about 8 months before I really started seeing significant reduction in the SUV levels from my PET/CT scans and over a year before I was officially N.E.D.(No Evidence of Disease). Also, what type of NSCLC does she have and what specific treatments did she get? That can make a difference also. Good luck, God bless and keep the faith...
David
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Permalink Reply by sbarnes1963 on -
Thanks for your reply. The info you shared sounds encouraging. She said it is stage IV NSCLC (a long word that starts with an "A"...adenocarcinoma? She was going to email it to me but hasn't yet). I don't know the specific drugs that were used. She had radiation 5 days a week for 5 weeks and chemo once every 3 weeks. The radiation must have worked some as there was minimal tumor shrinkage. My understanding was the chemo was to help destroy cancer cells and stop it from spreading. Initially there was a golfball sized tumor in the right lower lobe, chest lymphnodes and T-spine involvement and a small hot spot on the left scapula. After treatment it has spread to L-spine, right hip, right scapula and several intramuscular nodules...thus my interpretation that it didn't work. Did yours spread after initial treatment before it showed improvement?
The doc she sees is supposed to be good from word of mouth but I'm a little underimpressed. He says this can be cured but everything I find on the net said stage IV with bone mets is not curable. After 1-2 chemos left arm is swollen & hard, she sees the doc & tells him about the arm, he says "could be a blood clot", she says "can't that be serious?", he says "it can" & sends her home with no further tests. She had to contact someone else who immediateley sent her for DVT check which came out positive for DVT in her neck. Due to difficulty breathing she's been on Prednisone & hasn't been able to get off of it for the same reason. She was not diabetic prior to Prednisone but now is on meds for that as her sugar leves were 200's to almost 500. She was called the night before her PET scan & told it had not been authorized. On further investigation the girl who does precerts at the doc's office was on vacation...really??? She was hardly eating any carbs & no sugar trying to keep her sugar level low enough to have the PET scan & then gets this call. They got it OK'd & back on the scedule & the results I mentioned above. Now the same doc who started with "this is curable" a couple months ago now switches chemo & sounds like this is the last ditch effort & if this doesn't work it may be comfort measures only. I just don't get it & maybe you can understand my confusion & "unimpressed" attitude. I know very little about all of this & if you or anyone has the time/patience to help educate me I'd love any feedback.
I know everything cannot be cured & it is was it is. God is the ultimate healer & He will decide the final outcome. I just would really like to feel comfortable that she is getting the proper care & the best chance for the best outcome for her case. It's really hard to try to try to understand when you know so little about cancer & treatment & what you should expect & when to look for another doctor. Not to mention the clock it ticking :( It's really nice to have this forum to try to help everyone...thanks again for any input :)))
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Hi again. Sounds like you are right in the middle of the confusion stage of treatments. Sometimes it seems like the docs really don't make sense and they may contradict themselves. It really is a guessing game sometimes for them and they can change their minds. I found that maintaining a positive confident attiitude really helped me. If you lose confidence in you Oncologist don't hesitate to get a second opinion and/or change doctors.
I was diagnosed in Jan, had surgery in Feb. They couldn't get the tumor because it had spread to the vicinity of the phrenic nerve and some arteries around the heart. Then on April fools day I started 35 radiation treatments, something like 6 treatment cycles of chemo. I had a ct scan in June that showed no change. Radiation is designed to provide a local response(similar to surgery) and the chemo is "whole body and hopefully will keep the tumor from spreading and also has an affect on the tumor(Double whammy). In Sept they started seeing some improvement in the PET/CT scans and in Dec some significant improvement. Then the Following June I was N.E.D.(No Evidence of Disease). Hang in there, it's a hard road but there is hope. Good luck, God bless and keep the faith...
David
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Permalink Reply by sbarnes1963 on
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This really makes me feel better so thanks for sharing. I really try to keep her pumped up and very positive as they say that is really important. She has done well with all she's dealing with. I found this site while looking for races to support lung cancer and then found this forum. It's nice for me to ask tough questions here so I don't bog my sister down and I can feel better too. Congrats to you and how far you have come!
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Permalink Reply by John H MOD on -
Hi Sbarnes, I can't really add much to your discussion that David has had with you. He has pretty much told you like it is. You are on the outside looking in and that is a very hard place to be. Your sister doesn't have to stay positive but it's more important you stay supportive and help her feel secure in how she feels about things. This is no walk through the park and sometimes as patients we need to feel we're being heard and not just seen. I am a 12 yr 3A Nsclc survivor. You are in your sisters corner and she knows that and that will see her future than anything else. Good luck to you and her and God bless.
John
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Permalink Reply by sbarnes1963 on
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I'm still trying to get educated & I found some more encouraging info: radiation continues to work for quite awhile after treatment so the tumors could shrink more over time. I also found a website where you can get some free books or you can read them online http://blochcancer.org/books/fighting-cancer/ I read it online & sent my sister the link. There's a couple more books there I'll go back & read also.
I honestly think she needs a second opinion. This is a statement she wrote to me yesterday "They were suppose to do chemo (Monday) but didn't after the scan results (considering they were not working) I told them that on January 11th but nobody listened". They did start a different chemo on friday. I am going to try to go visit her today & talk to her about it. She has never mentioned a 2nd opinion but she has given me enough info to let me know she is not 100% confident in her doctors and I think she needs to be. She needs to know they are they are fighting "with" her. I was extremely upset with the bloodclot in her neck (mentioned in my 1st post) that they just sent her home & she had to call someone else to get something done - that is unexcusable. The next problem, if she wants a second opinion, I don't know where to go. I don't want to just go "somewhere else", I want to go somewhere good! I can't get back yesterday or anything that has transpired. I asked in my 1st post "is it too late for a 2nd opinion?" I've answered my own question, as long as she's still here it is not too late!
More questions: 1. This keeps haunting me...she said she had to have 2 biopsies at 2 different times as they were having trouble figuring out what "type" of lung cancer she had. Can there be more than one kind going on at the same time? Did they "really figure out correctly" what type it is. I ask this due to the amount of "worsening cancer" and new cancer that was reported on her PET scan after radiation & chemo. Just makes me wonder are they treating the right thing or did it just not work for her. I know all meds don't work the same for everyone.
2. They say cancer is attracted to sugar (I don't know if they just in PET scan where glucose is injected or if it includes sugar in the body in general). She was on Prednisone so she could breathe & this caused her sugar levels to be in the 200- almost 500 range & they had a really hard time getting it under control (she was not previosly diabetic). Could these high sugar levels have contributed to the cancer worsening & new cancers since her last scan?
Thanks so much for listening & trying to help. I have a really hard time with "bad" things in life & I try so hard to understand them. I have learned that some things you will never have answers for & you will never know "why" but I keep asking & keep trying...lol
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Permalink Reply by John H MOD on
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Hi, yes she can get a second opinion and depending where you are there are a lot of good doctors out there. Look for a cancer center. I'm sure you find one close to you.
On your second question all cells use sugar as thier fuel. The uptake of sugar is greater in fast growing cells . Cancer cells are some of the fastest growing cells in the body. The pet scan measures and shows where the uptake of sugar is greatest. The only thing with pet scans is it doesn't diferentiate from one cell to another type. So an infection or repair of some other injury could show signs of uptake.
The one thing that is hard is for your sister if she is going to doctors appointments without someone else there with her it becomes very hard to remember all that is said to her and remember correctly. When you go and your under stress you only hear what you want to. It would be of a benefit to her if someone with a clear head could go with her or if she would give permission to the doc to speak with someone about her condition.
I hope this helps.
John
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Permalink Reply by sbarnes1963 on
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I'll keep researching to find a place if she wants to do it. Every piece of information I get is helpful...I really appreciate it :) I know family has been with her at some appointments but not sure if they go to all appointments. She is an aggressive type & used to "running the show". I think that is good as she is not a quitter & determined but also hard when she doesn't feel good & things feel out of control. When she gets bad news I tell her to put her boxing back on, we're not done yet and we're going for round 2! I usually manage to make her laugh which is a good thing :)))
Thanks again.
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Permalink Reply by Sarge on
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Hey there: Just a couple more suggestions: first, would suggest you or your sister take a small recorder to appointments and record the conversations she has with her doctor(s). Even if she is alone, there will be a basis for discussion with you or others after she returns home, and a complete recoprd of all issues discussed. It has been shown that we as patients only hear about 10 percent of what we're told, so information gathering is difficult at best if we're alone at appts.
Second: Suggest you do get a second, and that you make sure it is at an NCI designated cancer center. They are recognized for bothtreatment and research, which can be valuable should your sister decide on a clinical trial treatment protocol.
Hang in there and keep faithful to yourself and your sister..........
Sarge
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Permalink Reply by sbarnes1963 on
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I work in a doctor's office & patients will always ask me questions after the doc has seen them & left the room. I wasn't in there so I have no idea what the doc said...lol. I just have to bring the doc back in to answer their questions so I fully understand what you mean. This is nothing cancer related. I can only imagine how much worse it is for cancer patients as I have no doubt being told you have cancer is overwhelming and your mind must go a million places as the doc continues to talk.
Still researching the "where to go" part.
Thanks for your suggestions :)
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Permalink Reply by AmyLCA on -
Hi T,
I'm sorry to have come to the party late.
Where is your sister located? I can help with the second opinion suggestions. Take a look here for how we do it.
Regarding your biopsy question, lung biopsies can be very difficult to get clean tissue to look at, so it doesn't surprise me that they had to go back and try a second time. The additional question to ask at this point is, have they tested her for mutations? It is becoming more standard practice for people with stage 4 adenocarcinoma to at least be tested for a mutation called EGFR. It is the mutation that predicts how well a person might respond to a drug called Tarceva. This mutation is more common in women with adenocarcinoma, especially those who do not have a smoking history or quit smoking a significant amount of time in the past.
Regarding your question about sugar: As I understand it, the whole thing about cancer feeding on glucose is more complex than it sounds. There seems to be a connection between high insulin levels and cancer risk, and high levels of sugar are related to insulin levels. But regular cells need glucose too. Cancer cells just use more of it. That's why PET scans light up. It's complicated and I won't say I am an expert. My guess, though, is that the high sugar levels are not responsible for the cancer spread.
Hope this helps!
Amy
PS - nope, not too late. :-)
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Permalink Reply by sbarnes1963 on
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Hi,
She is in South Bend, Indiana. I am currently on the site now looking. From what I can tell, it looks like she is being treated at an NCI center. Mutation testing? No idea if that's been done. She used to smoke & quit 1.5 - 2 years ago (not sure what qualifies as "significant amount of time" since quitting).
Re: sugar thing...I'm grasping at straws & still full of hope! Was hoping it could account for the spread but figured probably not.
She's on a new chemo treatment as of last Friday. On further research it says chemo hunts for these fast dividing cancer cells. She has lots of new activity that says metabolically active. Sounds bad, I know, but maybe this is a good thing for the new chemo to find it & destroy it!
Thanks, ***everything helps!***
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