With the help of several people on here (you all are great!!) I urged my dad to push for proton therapy over the IMRT that was suggested for chest tumor. We did last week and tomorrow he is set to begin mapping for proton therapy to the chest tumor (4.9 cm) by his heart! I anticipated this would move at a slower pace with insurance, however with the tumor now growing on chemo and it pressing into his heart and SVC it is an urgent matter. So far the mapping for proton has been approved by insurance. We are also going to discuss proton to the small portion of right 4th rib and then leave the 2 adrenal tumors alone even though one has enlarged in chemo. I agree that this needs to be there so they can eventually re-biopsy since my dad has no mutations found on first biopsy.
He finally had a pulmonologist consult today at my urging. He has mild emphysema and his diaphragm on right side where tumor is quite enlarged. He also has a cardiologist consult this Friday so we’re getting things moving.
Is there anything I should know or ask tomorrow before the mapping of proton therapy? I am also interested in hearing any experiences you all have had with proton therapy, what to expect, and did it completely get rid of your tumor or kill it? I think they are doing it as palliative but I don’t know. I don’t want to miss anything I should be asking and have written questions that I can think of to take with us. Thank you all so much again!
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Lisam81
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I’m theilled for your dad that they are going forward with this. I had IMRT as proton therapy did not exist when I was diagnosed. I’ve kept an eye on the research against the day I experience progression. This is what I would want for myself or a family member.
Questions to ask. Will there be changes to the skin where the radiation enters? What will the side effects be? How do we cope with fatigue? Will he be given steroids? Will this affect his appetite?
Please update us from time to time. Best hopes for the best possible outcome.
Thank you, Denzie! It went well but I still left with confusion and questions. Before going I had told my dad of all the positive stories on here and how proton is another tool we have towards our long term goal and possible NED if he does eventually decide to do all 4 areas. Doctor mention radiation was palliative only (because that’s what dad’s oncologist has requested as his oncologist isn’t convinced of the studies showing benefit of radiation) and that it would be 3 weeks, 15 treatments, with only the goal of pulling off bronchus and heart and shrink some and to “hold it at bay for 1 to 2 years”. When my dad mentioned he’d like it gone and dead, the radiation oncologist nicely explained that stage IV is not curative and that the 1 to 2 years is a significant amount of time based on his stage IV diagnosis (life span for my dad). When I mentioned all of the stories and people on here who are here 2+ years out and that it is extending more today than before, so we want to treat with that in mind. I feel strongly my dad will be here a while. He said that’s where he doesn’t like mentioning or comparing because “you all here” are the exception to the rule and not reality. This is not the first time a doctor has told this to my dad and it makes my job so much harder as I’m having to build him back up again. I’m feeling 😔 after yesterday when we initially went into it very positive and ready to attack this obstacle as one more step towards getting my dad where he needs to be.
He also said it was approved for proton mapping, which they did yesterday, but that he didn’t know yet if he was choosing IMRT or proton for my dad. He said they work differently and one could be better for him over the other and it takes a team to decide which is best. So we’re back to IMRT or proton and waiting to see which one, but mapping was started. He also said that the one adrenal that is slightly enlarging on chemo will eventually be next for radiation after chest tumor. Which would make 2 out of the 4 tumors receiving radiation. The other 2 are still stable.
I just want so badly to help my dad get to where he needs to be, his tumor load is low, and I feel he’s fortunate for this and that we are in a period where every decision is critical while his tumor volume is low. But everyone just keeps reiterating that his chances of living 2 years are not the norm and they have him for sure terminal before they even try. I don’t get it especially based on these forums....
I know exactly how you feel, Lisa. When I was first diagnosed, I looked everywhere to try and find the ‘good’ stories and stay focused on them. What I have realized after living with stage 4 for two + years now is that all of our cancers are different and will respond to treatment in individual ways. I don’t think your doc was trying to discourage, the statistics are real but who wants to be a statistic? Just Monday I heard a radiation oncologist at my support group tell us just what yours said, stage 4 treatment protocol is not ‘curative’. That said, this is an exciting time in lung cancer research and anything is possible. Let’s continue to pray more effective treatments will be found in our lifetimes, hence the need for more research funding, clinical trials and thinking outside the box. I have not had radiation to date and my disease remains stable since August of 2017. I told myself in the beginning that if I could make it 2 years then anything was possible! I still believe that. Best of luck to you and your Dad, he is very lucky that you are by his side. I can’t stress enough how important it is for survivors to have a support system that believes in your process and helps you stay focused on living in the moment yet seeing a grand future ahead.
Thank you for reaching out! I guess it’s just the constant unsolicited statistics that keep being reiterated at visits is what bothered me. We’re not asking for them, only that he wants to be treated as aggressively as possible while his tumor load is low, at the chance that he could be one that lives 2+ years. Basically my dad wanted confirmation that while he may not be the lucky one, he wanted to know that he was being treated as if he could be that person, and that they would treat with the goal of trying to get him there and not just doing “just enough” to get him to 1 year. I truly believe a doctors outlook on your possible survival factors into how aggressive he chooses to treat someone as opposed vs just treating on a life support method I guess you could call it. And each time we’re met with its “highly unlikely” and one so far as telling my dad statistics show he has a 5 percent chance at stage IV to be here in 2 years and said it absolutely will not happen. He said “you will NOT be alive in 2 years with stage IV. It won’t happen” My mom had to walk out. I think unless someone is specifically asking for statistics, which obviously we’re not in the dark about, a doctor shouldn’t keep stepping on someone’s hope when they’re just trying to “get there” and see that just maybe they are one of the lucky ones. I guess if that makes sense?
We know stage IV will never be called cured but NED or living 2-3 plus years is a hopeful goal to have and not one that I think, with today’s treatments, is out of reach. My dad’s mother, my grandma, passed of lung cancer 4 years ago at 85. Granted, I was not as involved in her treatment or local so I never saw it firsthand. My fiancé’s dad passed of lung cancer and he lived 24 months, but that was in 2001 and way before the treatments we have today. I also never met him. My fiancé’s uncle passed of lung cancer 2 years ago in another state. It was 6 months from time of diagnosis to when he passed but his lung cancer was aggressive when it was first discovered. This was in another state so between my fiancé and I there’s 4 family members that had lung cancer, with my dad being the only one I’m experiencing firsthand. I guess I just want to make sure my dad has a team of doctors who obviously know the statistics but say “we are treating you as if you will be here in 2+ years and our decisions in treatment are to help see if you can achieve that goal” as opposed to we’re just keeping it at bay for 1 year because it might not be worth being aggressive treatment wise because you’re unlikely to be here in 1 year. I know I rambled so I hope this made sense! Either way, thanks for listening. It helps to get this out sometimes to those who understand. My prayers go out to you and may you continue to heal and move forward another 10+ years! I am still holding out hope that it’s not impossible!!! 💗
When I was diagnosed with my stage 4 lung cancer in 2010 my doctor gave me the most aggressive treatment available at that time in the hopes that they could help me live 10-15 months. There is no way to predict exactly how long he might survive. All stage 4 treatment is considered palliative. Mine included.
The goal of treatment at stage 4 is to prolong life with good quality. Whether that be 2 years or 20. No one can predict at this point exactly how long your dad might live. Since my diagnosis the 5 year survival rate doubled then doubled again.
SVC is a serious complication but it does not have to be an immediate death threat. And there is no telling how dad will respond to the next round of chemo or targeted therapy until he does.
Yes, I am an exception, but when diagnosed I was not diagnosed as an exception. If only a tiny percentage of those who diagnosed fall into that percentage the those who do have a 100% chance. (I know, shaky argument but it explains me!)
This webpage has a new partner in the Addario Lung Cancer Foundation. It may do wonders for your dad to watch a few of their Lung Cancer Living Rooms and pay special attention to the patients who share their stories. They can be viewed in YouTube and they are free. They are live the 3d Tuesday of every month. And they are a great educational resource for you both. Do check them out at lungcancerfoundation.org or watch the Living Room series. Here’s s link to get you started.
Thank you, Denzie! I am definitely going to check out the link and videos later today. I appreciate it! I wrote a long response above to PegD and maybe it will explain more on what I was meaning by the original post. Thank you so much for “listening”!!
I have written about my husband's condition so I hate to repeat myself, but, again it might put a spark of hope in your heart. When he was diagnosed with lung cancer in 2013, the tumor was small but his pulmonary wanted him to have left lobe removed. I knew about protons so we elected to go that route in Jax. The tumor was behind the heart but they felt they could reach it. After protons he was given some chemo. The tumor continued to grow slowly, but many, many doctors felt it might be scar tissue.
He had 4 bronchospies , all negative!! However he had a spot on his adrenal treated with Steriotactics.
It was decided to try Opdivo, the immune drug, which was given every 2 weeks. He took 2 treatments and was very sick, ended up in hospital and a series of bad events but he recovered and moved forward.
. After MRI to brain he had Steriotactics there several different times within a years time.
Being in a trial at the Proton center, he had Pet scans every 3 months or so. The tumor sometimes changed shape or enlarged a little until last summer. The tumor suddenly enlarged a lot so he started Keytruda. During that treatment we moved across the country. He continued on Keytruda with chemo added. Nothing was helping, so that was discontinued when we changed doctors.
It was decided to try Opdivo once again as chemo did not work on him. Now, Opdivo is only given once a month. He has had 3 treatments, tolerated them well with some minor intestional discomfort, BUT his new SCAN last week shows NO growth. He is considered "stable". The first time in years there has been no change!! Yea, yea, yea.
He is currently going thru 3 weeks radiation for very small brain spots.
He is taking Mementine, a dementia drug, so he does not lose short term memory, otherwise no difficulties. He is 82 and takes a nap upon occasion. So do I. It has been 5 years next month since we traveled to the Jacksonville Proton Center. Best decision ever.
To answer Denzie, the areas of radar penetration are red for a while, that is all. My Ed went through the process well. My only question would be that the tumor is so close to the heart, if you could get another opinion from a Proton Oncologist, I would. It sounds to me the Proton would not be as invasive as the other procedure they are talking about.
The thing about cancer is that everyone is different and everyone reacts differently. If chemo does not seem to be working as it didn't with my husband, it could be radiation is best for him too. Ed's Proton Oncologist called after viewing reports from his last scan and told Ed he had no other cancer except the original spot. (This does not include the head). So, after 5 years that it has not moved to other places is almost a miracle.
Hang in there, continue to be a warrior go by your gut feeling.
Love to your mom too. Trust that you are doing the right thing.
Positive thinking is paramount, so dad needs to only listen to positive stories. No one is promised hours, days, or years but it is up to us to fight and he needs to fight too. Go girl.
I should have added, there are Proton Oncologist that differ too! I first contacted Loma Linda which has been around for years and years and they were not interested in his case. They do mostly prostate treatment and maybe more difficult cases. Go figure. So, went to Jacksonville and they welcomed us.
MD Anderson in Houston does protons but they are so busy. Many other states offer it as well. I understand St. Jude is putting in a Proton center. How wonderful.
Thank you, Gloria!! My apologies for not responding right away. I’m dealing with stuff for my dad and my dog just had major surgery. Being pulled in so many directions and I know everyone here can relate!! Thank you so much for the hope and positive story!! I am going to relay this to my dad. It will be good for him to hear more positivity! Thank you so much for sharing your husband’s journey and may he continue to do well with the brain radiation. It sounds like you both make a great team together and have a great team on his side fighting for him too! We will be seeing Dr Hoppe eventually for a second opinion!! 🤗
Read it and I have a suggestion. Fire that oncologist. You want a doctor who is going to fight with and for him. The doctor doesn’t have to promise him two years. You want a doctor who is going to tell him that he will do everything in his/her power to help him live a couple years with as good a quality as they can manage.
Alternatively, you could confront his doctor. Tell him you know the odds and don’t need them repeated. Also, report your conversation to the business manager at the practice. You would be doing future patients a favor.
Again, when diagnosed there was no way to tell that I would be an exception. My doctor was as aggressive as he could be in the hopes he could get me 10-15 months.
Makes sense, Denzie! That’s all I was wanting from the doctor. I am going to have a talk with my dad about things and see what he wants to do. If not, I will be talking more to his dr and team about things. Thank you!!
Hang in there sweetie and tell your dad not to give up. Were rooting for both of you. Know that we care and will be here for you both. Love susie jo1948
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