My dad (64 years old) found out on 2/28/18 that they suspected lung cancer following a CT scan. It was confirmed and I got him in ASAP with Moffitt Cancer Center in Tampa. After a PET scan, it was confirmed stage 4 NSCLC. My hope was in the Opdivo/Yervoy clinical trial they were offering but was heartbroken to find out a few days ago after the PET scan that he did not qualify for the clinical trial because there wasn't a whole tumor they could safely remove, which is needed to qualify. The 2 inch mass in his lungs is pressing a bit on the right ventricle of his heart. They have not gone over the results from the PET scan, but the CT showed it looks to be contained to one lung, metastasis to the adrenals, and possibly in the fluid surrounding the one lung. He has a needle biopsy set for next Thursday and he had the brain MRI yesterday. No results, but I feel things are moving so slow.
Moffitt called the other day and said they want to get him into another clinical trial that they are researching there solely. It is a combination of Keytruda and Vorinostat (Phase I/II). I cannot find any info on this combination and something in my gut doesn't feel right about this. I think his cancer should be hit aggressively at this stage, possibly a 2 chemo option with Keytruda together from my research. To me, this trial seems like "let's see how long we can extend his life" rather than let's hit it as aggressively as we can in the hopes of shrinking tumors and make it to 5-6 years out mentality.
I am in the process of trying to get him into Baptist MD Anderson in Jacksonville (we live in Orlando) for a second opinion. This seems like it's moving slow too. They made an appointment for 4/2 for a second opinion but I'm trying to get that moved up.
Has anyone heard of Keytruda and Vorinostat being tested together? And am I right to feel like this might not be the best first line of treatment for my dad at this point? I am an only child, so I'm doing the best I can for my parents and my dad. I do not want to make the wrong decisions for him as they are looking to me for significant help in this. I am determined to help him beat this!!!!
Thanks for any help!!
Lisa
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Lisam81
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Lisa, already you’re proving to be a great advocate for your dad. Unfortunately the entire staging process takes several weeks while waiting for test results to come back. For me in 2010 it was a full month before treatment began.
At this time the only option for him to receive the Keytruda is the trial. In order to receive it outside the trial his tumor would have to express PDL1 at a rate higher than 50%. There’s not been enough time to get those results back yet.
You said that they confirmed that it is cancer, what type of cancer is it? Why are they doing a needle biopsy if they’ve already diagnosed it? (Only a biopsy can confirm that it is cancer.)
The Moffet people have a great deal of experience and if they think it’s cancer it probably is, but without a biopsy they cannot be 100% sure. They have not finished the staging process yet, he needs a complete bone scan and an MRI of the brain.
If they haven’t done a biopsy perhaps they are hoping that the PET will offer them a safer biopsy site. They don’t like to get too close to the heart with a needle if they don’t have to. Sometimes they will treat without biopsy and this may be your dad’s case. In that case they may do a liquid biopsy which can only be used to diagnose or rule out the presence of an EGFR+ tumor.
As to why they feel he might be a candidate for the Keytruda trial contact the trial nurse and ask them why.
Please remember though that ultimately the decision is your dad’s. Be careful to give him enough unbiased information on all his treatment options.
We were told by the thoracic oncologist at Moffitt and the final diagnosis on the report paper of the PET scan that it is lung cancer. There is a 3 cm mass near the heart in his lung with spread to adrenals and some paratracheal lymph nodes. No head and neck involvement, no spleen, liver, colon involvement. No axial lymph node involvement all per PET scan. He has had a CT, a PET, a brain MRI yesterday. He saw the oncologist at Moffitt on 3/8. Since that one and only appointment the doctor has not wanted to see my dad again and no one called to schedule the biopsy. After days of contacting Moffitt back and forth we finally drove to Tampa from Orlando to schedule the biopsy since we couldn't get a call back on it. They scheduled the biopsy for 3/22. They did blood work on 3/8 for gene mutation, none of which has been shared with us yet but maybe it's not back yet. The second time we heard from his doctor was less than a week ago, the very day after his PET scan. The doctor called briefly to tell my mom, since my dad wasn't home, that it IS stage IV lung cancer and that he doesn't qualify for the Opdivo trial. It was a very short phone call. He said he wouldn't move the biopsy up from the 3/22 but that he wanted a core biopsy done. The next phone call out of the blue was from a guy who wanted to enroll my dad in a Keytruda and Vorinostat clinical trial run by a different oncologist at Moffitt. We were not told why this trial was best, why it was recommended, but we were told he had until 3/26 to make a decision on the trial. The second time ever we will see his oncologist at Moffitt is on 3/22 after his biopsy. I suppose we will find out why then and any other treatment plan. Until then we have been left in the dark since 3/8 with trouble getting people to return phone calls and a major decision his treatment they are wanting him to make by 3/26. Their machines were down at Moffitt so all testing has been done at random outside facilities.
Also, I am not forcing decisions on my father and realize ultimately the decision is my dad's, so I do know that and will remember that. However, every person's situation is different and in this case, my parents have shut down completely with this. My mom shut down. My dad is overwhelmed. They know nothing about genetic mutations and even any treatments. I cannot get them to research as it upsets them and they won't do it. I have tried and my mom freaks and my dad wants it to go away. If it wasn't for me, they wouldn't even be at Moffitt. They also didn't know to get a second opinion or where. I have made all appointments, all phone calls, all advocating. They hand me the phone. They know little about it and I cannot get them to learn a lot because it's upsetting. My dad calls me his "patient advocate" and while he has done some research it isn't near what it should be. So I am stepping up for him and his health. So if he looks to me for what he should do, and I KNOW he is going to as he already has been, then I will step up rather than ultimately letting him make a blind choice.
How very difficult for you. You’re doing an excellent job from what you’ve written and you are shouldering a tremendous burden. Take time for yourself so you don’t get sick. I know that’s not easy with no back up.
Please let your dad know this in the hopes he can internalize it and apply it to himself: this is no longer an automatic death sentence. Between 1968 when Nixon declare the War on Cancer and 2015 there were 3 treatments approved for lung cancer. Since 2015 there have been 12 new treatments approved and a couple more looking at being fast tracked for approval. By going to moffet and the Baptist MD Anderson you are giving him the best possible chance.
My stage 4 was diagnosed in 2010 and I’ve defied all expectations.
You’ll have more options when they can do an actual assessment of his mutations. I suspect the push for the trial they contacted him about is because they want chemo naive patients to gauge how it’s working. When things settle down for me today I am going to see what I can learn about the endpoint they are looking for and get that back to you.
I suspect he’s already signed HIPAA forms giving them permission to talk to you about everything. Call that trial nurse Monday and ask what their rush is.
Thank you! I apologize for the delay in my response. There's a lot going on but I am reading everything! I pulled his records yesterday from the patient portal. They are NOT informing us of anything yet so I'm finding this out from reading the info in his patient portal. It has not spread to the brain, BUT there is a lytic bone lesion seen on the right 4th rib, suspect spread to bone. There are also changes in the brain indicating a past stroke or possible risk of impending stroke. His mother passed from lung cancer 3 years ago. My fiance's father and uncle passed from lung cancer. I know there's new treatment that's come out, but 4 lung cancers in 2 families is too much. Just too much. The doctor's hope at Moffitt was the Opdivo/Yervoy clinical trial. Because there was not a whole nodule they can remove, this disqualified him from the trial that the doctor thought would help him most. This new clinical trial they want to put him in sounds like a "consolation prize" to just see if they can extend his life any since his main avenue was squashed. I don't want what is going to just extend his life by months, I want the best fighting chance he has to beat this and extend years and years. I want aggressive. I have called the nurse, she rarely returns phone calls and we're just told the doctor will go over things after his biopsy on the 22nd. You have given me so much hope with your story - 8 years and so many more is amazing and I am so happy for you!! Your story is my HOPE for my dad! I know there's something out there that will help... it's just finding it that is overwhelming.
Meant to add: both hospitals should have lung cancer nurse navigators. Demand to speak with them. Also, don’t let them try to dazzle you with medspeak-make them speak in plain English.
Hi Lisa, and my kindest thoughts are with you and your father. As a lung cancer survivor (6 yrs) , my best advise is to work with the experts and to follow their best advice. My own oncologist did his internship at Moffit and I feel I owe my life to him and our joint decisions. I suggest you go back to Moffit once more and have a heart to heart session with the treatment team there to review all alternatives in order to best decide on an optimum treatment plan. For my treatment plan, I did go through it all pretty much, i.e. maximum targeted radiation , chemotherapy, surgical lobectomy, and 2 more years ( yes, years ) chemotherapy. Something worked, and somehow I am still here. In that vein, I agree with you that time is of the essence , and that once you have agreed on a treatment plan my personal advice is to start it that day and to waste no time on further delays. Again, kindest thoughts to you and your father, judg69
Thank you for your reply! We would love to go back to Moffitt and discuss why they are recommending this treatment plan, but his oncologist had 1 appointment with him on 3/8 and since then they won't see us until 3/22 after his biopsy. We had to drive there to schedule the biopsy since no phone calls were being returned to schedule it. We could only see the front staff though. The phone call for the clinical trial came out of the blue from someone else and we have until 3/26 to make a decision on it. No one has told us why or any stats on the clinical trial. It wasn't until a few days ago that we found out we'd even see the doctor a second time on 3/22. We've had no interaction with the team beyond the 3/8 visit and 1 brief phone call the other day where the oncologist called for the first time after his PET to tell my mom it is stage IV lung cancer. All testing has been done at outside facilities due to the machines at Moffitt being down. I hope on 3/22 we find out more info but that doesn't give us much time by 3/26 to make a very important treatment decision. Under pressure and not knowing the reasons for the recommendation yet.
Welcome! You will find a lot of good info here!! Have you tried calling the oncologist and explaining that you need an appointment sooner because you need time to digest things before making such a big decision? Your parents are from a time when cancer was a death sentence - please tell them how much things have changed in so short a time. Their fear is totally understandable. Also let them know about folks like Denzie (who is wonderful and very well informed!) and that many of us have lived beyond our expiration date. There is so much to hope for now! The new drugs and treatments are doing wonders!!
Don't be afraid to get a 2nd opinion, either. You are on a deadline and need time to process things!!
Moffit is wonderful, too. I go there when in FL for long periods of time and have always had a very positive experience.
A lot has been placed on your shoulders. Please remember to take time to care for yourself. Some of us have turned to a special friend to help us talk things out.
Tell your Dad about this board and the people on it! You can also tell him about folks like me...this is my 5th primary cancer since 2002 and I fully plan on beating this one, too!!
Also, as you do your research, please don't rely on anything that is older than 6 months, That was the best advice my oncologist gave me. Anything older than that is out of date. By the time things get to publication newer treatments are happening.
We are here for the good and the bad. Please don't hesitate to ask questions - many of us have had different experiences.
Thank you Lauri-Anne! Just found out it has not spread to his brain, but looks like it has spread to his bone, particularly the right 4th rib. We are going to Baptist MD Anderson on 3/20 for a second opinion. I am unsure of the clinical trial Moffitt wants. The doctor wanted another clinical trial but he didn't qualify. The doctor came up with what feels like a consolation prize. I hope to find out more info on 3/22 at Moffitt but until then we are completely left in the dark. God bless you and I know you will win, 5 times! You give me hope!
Lisa, clinical trials are so very often successful that I wouldn't think of them as a 'consolation prize." Way back in the 80's my grandfather was days from death and Roswell gave him the option to try a brand new drug - the worst it could do is shorten his life by a few days. Well, we got 4 more glorious years with him!!
The single biggest question I would ask about a clinical trial is if they are using a placebo. Now days they don't use placebos as much anymore because it is considered unethical to give a patient no treatment. Instead they do provide a known treatment or the clinical trial - hope that allays some of your fears - but ask anyway just to be sure.
I would be willing to do a clinical trial, but I don't qualify after so much cancer.
We are our best advocates. Call the oncologist(s) and ask to be put on a waiting list - hopefully that will get you in sooner. The squeaky wheel gets the grease, so tell them you are on a short timeframe and don't give up. Also ask if there is a nurse practitioner who can spend some time answering your questions. Before you see either, it is good to write things down that you want to discuss - I tend to get overwhelmed and forget - this way I do not forget!
Right now everything is scary and new - you will calm down and be far less anxious as time passes. Especially if you keep asking questions and getting answers you can understand.
Waiting the so hard...I pray you take time for yourself and keep busy during the wait!
I mean consolation prize because it wasn't what he really wanted to put him in. The doctor sounded disappointed, and then boom we get a phone call for this without knowing why. And this clinical trial was started by them in February 2016 and it's still in Phase I/II with looking for 100 participants. Either no one else feels this is a good option, or the combo isn't working on people very long. Something doesn't feel right. Both are approved drugs, but the combo together is what they are testing and it's safety to be taken together. I can't find much on Vorinostat being used for lung cancer. If someone would tell us more info, I might feel better, but I'm not sure how much because something feels funny in my gut about it. And I usually like to listen to it, but we're open to hear the doctor out!
Given what you have written, my best advice is to gather all the information you can on the clinical trial and ask directly why it is still in Phase I/II. It is possible that they are looking for specific parameters that are not common. Whatever you find out, follow your gut instinct. The bottom line in all of this is that we can only do our best at the time. Hindsight may rear it's ugly head later, but reality is we cannot live worrying ourselves to death about making the right decisions - we can only do the best we can at the time, and we have to learn to accept that. If your gut is telling you something isn't right after hearing them out, follow your gut - sometimes we cannot put our finger on what is wrong, we just "know" it isn't right.
Wishing you the best possible decisions! Please keep us informed as things progress.
I private messaged you, but also wanted to welcome you to our community. As you can see already, you will get wonderful support and practical advice from these caring people. I know that the waiting is excruciating, but I have learned from this community that it does take time for the team to gather all the necessary information/pieces of the puzzle before they can come up with an effective plan. You are doing a great job as your father's advocate, and that is a hard place to be, so take care of yourself too. And never be shy about asking questions, here or with the doctors. You have a right to understand it, and help with decisions. Virtual hugs, Peggy
Welcome Lisa. You are being inundated with a ton of information in a short period of time. It can be overwhelming, confusing and frustrating. At this point they are trying to sort out what kind of cancer your dad has as well as the extent of it. All this takes time and the biopsy is a crucial piece of information. Once it is all put together, a treatment plan can be devised. My initial reaction to my diagnosis was get this thing out of me, but that is not always the best option. Once all the pieces of the puzzle are in place, the best treatment options can be presented to you and your dad. As others here have said, be sure you understand the expected outcomes, the probable side effects and anything else you want to know. Don't be afraid to ask questions until you fully understand what is being said. If you are not satisfied with what you are being told, a second opinion is a great option, or even a third one if the opinions differ.
I wish you and your dad well on this journey. He is blessed to have you with him, but do take are of yourself.
Thank you, Jean! They're not giving us much time though. We have only seen his oncologist once on 3/8. We receive 1 phone call saying it IS stage IV lung cancer after PET, then a second phone call the next day from someone else saying they want to enroll him into this clinical trial and we have until 3/26 to make a decision. So I don't feel there's a lot of time to decide, especially when we don't know why or any stats on it. I suppose we will find that out after the biopsy on 3/22 and then they will give us 4 days to make the treatment decision. In the meantime I just got him a second opinion appointment on 3/20 with a thoracic surgeon and oncologist, 2 different doctors, at Baptist MD Anderson in Jacksonville.
Lisa, one thing of many I forgot to suggest is to bring along a tape recorder so that you can listen to the info later. I use a tape recorder that is designed for dictation. You'd be amazed at how much I miss because there is so much information being tossed at one time and we naturally reach a limit and end up missing things.
Also, make sure you write down the questions you have, and make sure that the questions are addressed so that you understand them. Your oncologists should be willing to spend time time answering all your questions so that you and your parents can make the best possible decision.
So glad you are getting second opinion. And yes, use your gut feelings. My husband's cancer was left lung, close to his heart almost 5 years ago. He had Proton Therapy in Jacksonville. After that the scans showed it had gone to one Adrenal and eventually 3 spots in his head. Those were treated with Steriotactics successfully. They tried him on Opdivo but he had a bad reaction to it. After about 6 months now the tumor has started to enlarge. He is now on Keytruda and 2 chemos. We will know this week how well he is doing. He has tolerated both very well and feels good. I have been a warrior about his getting good care and have changed doctors a few times when my gut felt that doctor was not the best for him. And yes, I am the one who gets on line to search any and everything looking to get him well. We are in our 80 looking forward to the 90s. We were sweethearts when we were 11 and 12. Found each other 11 years ago. I won't lose him without a fight. Stick in there. These folks on here know their business and are very uplifting.
Gloria, first, how is your husband doing? Did you find out anything? I pray you found out good news and Keytruda is working well for him! And second, thank you so much for your response! You give me hope and I couldn't help but smile reading your post - what a sweet love story! We want so much to help those we love - I know you can fully understand!! I did check into proton therapy but was told he needed way more than that. There are so many options and so many directions you can get pulled into in the beginning that it's so hard to know where to go, where to start, and if you're making the right decisions. It's a very scary place to be initially when all you want is to "fix" things right away and you can't. We decided to stay with Moffitt. He didn't qualify for a clinical trial he was going to start today so now onto standard chemo plus one extra immune-enhancing drug in a phase I clinical trial. I hope and pray it's the right decision. God bless you and your husband! Keep fighting!!
You are doing great ! I am definitely impressed by your enthusiasm and passion in helping your dad in getting a logical treatment option which ,as I see it,sets a good role model for others to follow.That said,you need to wait for the tissue biopsy results to ascertain if it is cancer, types, mutation,etc. bf the best treatment options can be devised.Cancer does not develop overnight,and,if you can help your dad improve his immunity and nutrients level till the biopsy results known,you may find it a pragmatic approach to break the present impasse.
Very true! But his biopsy is 3/22 and Moffitt needs an answer on the clinical trial by 3/26. It's a lot to decide in a short amount of time. As it is now, it looks like it has spread to adrenals and the bone, as seen in the right 4th rib. I hope the second opinion on 3/20 will clear more up that we have been left in the dark about so far. Thank you for your response!!
Lisa, I was diagnosed with stage 4 NSCLC in 2013. I had a nodule about the same size as your dad’s and almost same place. They could not do needle biopsy due to proximity to the heart but I had a surgical biopsy. My cancer also on outside of lung, chest wall and a lymph node. I was treated with two months of carboplatin and Alimta. Then was switched to Xalkori for 7 months, Zykadia for 5 months, then back on Alimta every three weeks for a year. Keytruda and Vorinostat were not available for me when I was in treatment. I began remission in early 2016 and have had no evidence of cancer since then. I went from scans every three months to now every four months. Each person’s treatment plan is different just as each person’s cancer is not exactly the same. Just wanted you to know even with the older treatments like I had, remission is possible. Genetic testing opens the door to the newer treatments. There is much hope. Although no cure as yet, remission means a longer life while we wait on that cure that is closer everyday. All my best to your dad.
Judy, your story is amazing and gives me so much hope!!!! Thank you for taking the time to write. Was yours in the bone? They think it might have spread to the bone now, particularly the right 4th rib. They are going to do a core biopsy on 3/22 but now I'm worried that it's not safe?? They wouldn't do it if they didn't think it was safe, right?! There is so much going on right now and I will be out of town 3 days going from one opinion back to the original place, all in different places, so I apologize for not writing quicker. Thank you for your story and help!! All my best to you!!
Lisa, I did have a lung biopsy. Originally, they were going to remove the one lobe but when the surgeon got inside and saw that it had spread, he did the biopsy and closed up incisions. I had no problems with this procedure. That is how it was determined that I was stage 4. There was no evidence it had gone to bones. In the pre-testing, it was discovered that I also had a mass on one of my ovaries which turned out to be borderline ovarian cancer and I had surgery for that several months later. My treatment was done at Wake Forest University Baptist Medical Center in Winston-Salem, NC. I know there is so much information to absorb and decisions to make as each person’s cancer locations and treatment plan is different. Radiation was never presented as an option for me, but some doctors use that and of course the lobectomy was out due to the cancer’s spread.
The important things that helped me was having a doctor whom I trusted and was doing his best to help me with a treatment plan that was best for me, a strong faith, feeling supported by my family, a positive attitude, and finding things that made me laugh and gave me joy. I fully believed I would overcome this.
I had read a book years ago by Dr. Bernie Siegel (he has written several) in 1993 when my husband had a stage 4 cancer diagnosed (and yes, he is still surviving) that talked about the importance of a positive attitude. When the doctor gave statistics for him about how many died from his cancer, we turned it around to then he would be in the percentage that lived.
I believe in medicine but I also believe the mind is a great tool to use in a fight against cancer.
Hang in there, don’t panic, and tell your dad I am praying for him.
Thank you so much, Judy! You are right, the mind goes far, and God works miracles. I know he can beat this, we just need the right treatment and that is stressful. My fiance's dad and uncle passed from lung cancer, and my grandma (my dad's mother) passed from lung cancer a few years ago. My dad WILL be the one to beat this!!!
Knowing people who have passed away with this can make it even scarier. My father-in-law and three cousins all passed away from lung cancer but this was several years before my diagnosis and they did not have the kind of chemo and testing for mutations that is available now. So much progress has been made and is continuing to be made. We are lucky for the advancements being made in our lifetimes. I do believe that a cure will be found and our job is to keep living until it does.
Your job as a caregiver is to take notes during appointments since listening to the doctor can be overwhelming for the patient. Allow your dad and mom to feel free to express their feelings when they need to do so. Be a good listener. And you need to take care of yourself as well. Take time out and away from the stress. Although you want to fight this battle for him, it is his battle. And he will do it in his own way. Yes, you can be his cheerleader, but he is the one on the field carrying the ball.
Let other people help however they can and understand when some people turn away. Everyone handles the big “c” word differently. I found this to be true, but instead of being hurt and disappointed at times, I tried to understand.
Suggest or help your dad find some activity that relaxes him or makes him feel at peace. Mine was getting out in nature, listening to music, and believe it or not coloring. My 90 year old mom bought me a coloring book because she remembered I loved to do it as a child. Anything that takes your dad’s mind out of the “sick” mindset helps. He needs to listen to his body and not feel guilty if he needs to rest. Some days I did nothing and learned to indulge myself whenever I needed to. Also, let him do things he wants to do without worrying too much about whether it will tire him. We need to feel as normal as possible so we feel like we are living and not thinking about dying all the time.
Whatever transpires with your family’s cancer journey, enjoy the time together and continue to make good memories. Cancer is transformative and I learned so much about what is truly important to me and I find it takes a lot to ruffle my feathers these days.
You could almost substitute my name for your dad except I am 68 years old. Finally diagnosed with nsc lc in November 2017 at the Minneapolis Veteran's clinic. I had been having headaches and they finally did an MRI where it was surmised to be caused by cancer. I was never a smoker. I think you are hopping around and doctor shopping too much. The facts are not good. My realistic life span if I am lucky is maybe a year or 2. The VA oncologist recommended I start with cyber knife radiation to the head for 5 days straight. I scheduled the treatment the same day and in 3 days they had me in to start. After a pet scan they found a small lesion, maybe less than 2 centimeters, in the lung and the tips of a couple of vertebrae. The doc said treatment would depend on the biopsy. Almost collapsed the lung trying to get the biopsy. If you have certain markers you qualify for some of the newer drugs which might push a person into the 6 year survival range. Alas, I didn't have these markers and I was put on chemo, sort of a standard treatment with pemotrexiid and carboplatin. (Spelled wrong). Every 3 weeks I get chemo and they want to do 4 to 6 chemos. I have had 4 to date without having to drop out due to side effects. Amazingly a second pet scan showed a shrinkage of the tumors. The headaches are pretty much gone, I am managing the chemo all right and hoping for the elusive 5 year survival. The worst side effects are constipation and the nasty taste you get from food depending on where I am in the chemo cycle . Have lost about 12 pounds. First chemo was Dec 28. Anyone wishing to know what tricks I have developed for the side effects can message me. I also am on cannabis from Minnesota Department of health.
I wish you all my best in your fight and never give up hope!! I know my dad can beat this, and you can as well! We have only seen one doctor once, who is still ordering tests, and we're going for a second opinion on 3/20 and then we will decide on what to do. As of yet, no one has wanted to start any kind of treatment yet as they are still gathering info so I figure before it gets to that we need a second opinion. Keep fighting!!!!
It is tough having this type of medical problem. I'm not an expert in oncology, (retired at age 62 optometrist). Every case is different but I am going to give you a time line that my treatment has followed. My impression is that your people are dragging their feet but also the patient and caregivers can slow things down. Diagnosed Nov 27. Bone biopsy Dec 6. Started 5 days of external beam cyber knife treatment Dec 11 through 15. Lung biopsy Dec 15. First chemo treatment Dec 28th. Completed chemo every 3 weeks since. Had 2 pet scans during this time and an MRI. The second pet scan actually showed a shrinkage of the primary small lung tumor. My oncologist was impressed that I could make a decision and not just talk and mull things over. I think your dad needs to step up to the plate and not delay any further the actual treatment. I scheduled my radiation the same day I got the results of the bone biopsy and was in there with these multimillion dollar machines 5 days later. I really don't think you can out think the oncologist. I'm sure that if a clinical trial of some sort is advisable they will let you know. Meanwhile I follow the recommendation of the oncologist and the cancer team . Hope it works somewhat, but the doc said there is no real cure. Best of luck.
It's truly not us that's dragging our feet. He has not wanted to start treatment of any kind. When they scheduled the biopsy for weeks out I told them that was unacceptable. They said oh well. When the doctor called the one time since we've seen him in 3/8 my mom said could you please move the biopsy up in date. He said no, he was leaving it where it was. No one has called us with pet scan/brain MRI info. We pulled it ourselves from the patient portal and read it. When asked to see or speak to the doctor we were told we can speak to him on 3/22 after his biopsy. Today we received a phone call from the random clinical trial guy stating they now want a decision on the clinical trial before my dad's biopsy in 3/22. They want a decision before we're even told why they want to put him in this trial, what the stats are or even before we even get a second appt with his oncologist. They are pushing for an answer. When asked that we wanted more info on why, the guy said didn't you read the packet emailed. Well, yes, we did but it goes over liability and safety and side effects but nothing about why, what it does, the stats or data so far, length of survival. Nothing. So we, again, said we wanted to talk to the oncologist about it and he said we can wait and talk to him on 3/22 after his biopsy about it but that they want a decision before his biopsy. This is the only treatment that has been offered and this didn't even get offered until a few days ago. That's why we are going to Jacksonville tomorrow for a second opinion.
Lisa, that's a sad tale about the non-treatment and your dad's intransigence to starting treatment. Can't cure problems that are just about attitudes. My thought was I've got this cancer, let's start treating it as soon as possible. I think the doctors are over burdened with patients who want treatment, and want to listen to them since they are specialists. People who want to argue and delay probably get the worst treatment as your case seems to be. I've been very happy with my care at the Minneapolis Veteran's Clinic, and they are very speedy. I just do everything they say. Seems to be working so far. I may have contracted this cancer from Agent Orange when I was there in Vietnam in the Army in 1970.
I am sorry you and your dad have to contend with this awful disease. The National Comprehensive Cancer Network has good resources to help understand possible recommended treatment. My oncologist follows these guidelines pretty closely:
It will help a lot when the results of the biopsy are known as then you will be able to determine the treatment path the that is currently the most effective.
I am sorry but the link to the National Comprehensive Cancer Network I gave you before does not appear to work. You can go directly to their site at NCCN.org and then drill down to the information/guide for treatment of non small cell lung cancer.
Lisa, keep hanging in there- I am almost a 2 year Nsclc survivor and you need to know that lung cancer is no longer an automatic death sentence! I went through a complete round of carboplatin chemo and daily radiation treatments for 3 months, which did very little for me. I am currently doing Opdivo treatments every other week and my main tumor which was 4.75 x5.5 cm at diagnosis and a smaller tumor which matasisized during chemo and radiation have done well with Opdivo treatment. the smaller tumor is now gone and the main tumor was 1.9 x 1.9 cm at my last scan. Unfortunately the Cancer, when it is diagnosed hits everyone hard and the medical folks kinda leave us hanging! KEEP ASKING QUESTIONS and have and help your Dad to have a positive attitude! God Bless
Thank you for your encouragement and HOPE!! I am ready for the second opinion on 3/20! I won't give up and stories like yours give me even more hope! That's amazing!! Keep beating that cancer out of you!!! It will leave completely!! God bless you!
.. Keytruda is an immuneotherapy treatment only effective if certain other elements are present .. in my case they are not present yet one Dr wanted me to start Keytruda in combination with 2 other chemo drugs ..when I asked another Dr (2d opinion) said I didn't need it with the other two since the KPI's were not present making Keytruda ineffectice .. I ws diagnosed with stage IV Lung cancer, non small cell type, Jan 2018, I've decided I'm not doing chemo .. have you looked into CBD oil treatments ..looks interesting ..all the best with your dad .. m
Hi, thank you for your help! I actually have been looking into CBD oil and am still researching! Maybe keep looking into Keytruda if a doctor is willing to try it. In my many hours of research I have found countless stories of people who Keytruda has worked for when their numbers said it shouldn't have worked. Where someone has a PDL1 of 0, Keytruda worked for them, and some where their PDL1 was 90 and Keytruda did not work for them, when the numbers said it probably should have. My dad's PDL1 came back yesterday at 0, but if given the chance for immunotherapy we will jump on it. I have found in my research it's not foolproof on who it works on and doesn't. Don't give up hope!! All my best!
.. IMHO u r correct with regard to drugs wkrg or not wrkg with different people, plus the effectiveness of it, if it works, also varies by individual. Dr's have told me there is no way of knowing how much of a benefit, read years to live, treatment would add. In fact, when asked for a 'best case' scenario both Dr's I asked said the same thing, '.. possibly a few months to a few years..'.
In my relatively short time and experience with this industry I can see firsthand what I've believed all these years.. it really is all about the money and I won't be a part of it any longer. I'm realistic enough to know the future is uncertain and the end is always near so I just want to enjoy whatever reminder there is for how ever much longer that will be. My family has know for years that should this happen this is what I planned.
I ordered CBD oil yesterday after much research and look forward to whatever, if any, relief it may bring, though not from the cancer as that's not bothering me at all - yet. I'll be 66 on Oct so with age has come few 'other' ailments I'm hoping it may help with, ie, knees and finger joints..
I sincerely wish you all the best for your dad and you n your family.
Hi Lisa! I wish I had more experience with NSCLC. My mom was diagnosed with extensive stage small cell lung cancer exactly one year ago today and given an initial prognosis of 3-5 months. I’m mystified by the length the staging seems to go on, we were staged and began treatment within two days. We did 8 full rounds of chemo and two rounds of radiation, 3 days on the chest and 14 days on the brain corn profolactic reasons. My mom also had SVC syndrome and luckily was relieved almost immediately once treatment began.
I really just wanted to tell you that this journey is 100% yours and your families. I took on the role of primary decision maker, and there have been many times during this battle when my mom was unable to make decisions and my dad was, and to an extent, still is paralyzed. I fired several oncologists until I found one who understood my moms process. She was unique in the sense she really wanted to know NOTHING. To this day I’m not sure she could tell you she had small or non-small cell lung cancer. She’s never been good with details or a lot of information, and lived in terror of cancer her whole life. I’ve gone to every appointment, I’ve made every decision, her only job was to get better. If you have the time and ability, and desire to commit to this process, and your dad wants you to, don’t let anyone make you feel like you’ve overstepped, or made decisions for them. I had an oncologist from India tell me that in a good part of the world there isn’t even a word for cancer, many villages will kill someone with cancer (he’s currently fighting to cure breast cancer in the Sudan). He told me only in America are we so selfish and autonomous that our medical system looks down on family who “intervene.”
If you ever need anyone to talk to or need support, or feel overwhelmed please feel free to email me directly susannealta@gmail.com. Trust yourself, too. My mom has a world-renowned oncologist and so much of these treatments and their responses are based on genetics — advocacy is the number one thing you can do for your dad. Also remember, there are a million oncologists and it may take a couple to find the right fit. For me “staying the course” was never an option.
Good luck with everything. Hugs and love to you and your parents!
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Supporting a Family Member with NSCLC
