I am still around and check in on you all even if I don’t always post. As a lot of you know, my dad had stage IV NSCLC adenocarcinoma diagnosed 2/28/18, low tumor volume, and was held stable until 9/2018 at which time he went into the hospital on 10/16 and heartbreakingly passed on 11/20/18 from leptomeningeal disease brought on by lung cancer. I have since been relentless in trying to figure out what could have happened and why. I have researched, talked to experts and spent countless hours going over everything and I wanted to share some of it with you all and for future people who may stumble upon my posts later on. Maybe it will help someone now or later....
Something that I could never understand was how fast my dad went from stable cancer to leptomeningeal so quickly. It literally seemed like overnight. And what I have found, and what might explain what happened to my dad, is called a “disease flare.” I thought I was prepared and knew a lot to help my dad but I found I was not aware of the potential “disease flare” as a side effect to cancer treatment. And once I learned more about it, it seems to explain what happened to my dad. The biggest issue with a disease flare is rapid metastasis and/or leptomeningeal disease when/if it rapidly flares into the meninges. My dad did not have metastasis, but I believe had a rapid disease flare, once treatment was stopped for radiation, that went straight into the meninges- leptomeningeal disease
So a “disease flare” can be brought on 1-4 months after starting a cancer treatment or as quickly as within 1 week of stopping a cancer treatment to switch treatments. Tagrisso, Gefitinib and some others are ones that also carry the risk for “disease flare”, in which the disease flare can very quickly involve the meninges of the CNS and/or other worsening of cancer symptoms and tumor worsening very quickly. Starting a cancer treatment also carries this risk, whereas 1-4 months after starting a treatment the body, while initially suppressed, ramps up on treatment and experiences a disease worsening rapidly, the “disease flare.”, a burst of activity within. This can also lead to leptomeningeal disease even while on treatment as well, which could be held partially at bay by the treatment until treatment is discontinued. The other way disease flare could show up is having a current treatment stopped, even for a very short time to switch treatments. After the body has been suppressed on treatment, the cessation of treatment can potentially cause the immune system to ramp up, quickly producing a worsening of cancer and potential involvement of the meninges (leptomeningeal) very quickly. Without knowing this possibility, one might keep their symptoms to themselves when in fact they need to go to a doctor and tell them as soon as it happens. This is what I believe happened to my dad. He was on a clinical trial of Pirfenidone pills (9 per day) and Alimta/Carbo, then down to Pirfenidone and Alimta maintenance for stable disease. The Pirfenidone, while only for pulmonary fibrosis which my dad did not have, was thought to act similar to immunotherapy when combined with platinum chemo. On 9/27 his doctor took my dad out of the clinical trial, and stopped the Perfinidone pills that same day, to start radiation on the chest tumor by his heart that was causing the SVC syndrome. It was this move that I believe may have caused a “disease flare” when treatment was stopped completely, and my dad rapidly declined after, after having no worsening of disease being diagnosed just under 8 months prior. The disease flare can also happen commonly after Tagrisso is stopped. My dad was not on Tagrisso, but if such occurs and then disease flare involves rapid leptomeningeal, they are finding Tarceva has helped the disease flare that Tagrisso can potentially cause, for those with EGFR.
This is still relatively low chances of happening, but research suggests the statistical numbers of occurrences are grossly underreported to what the actual true statistics are. In other words, disease flare with or without meninges involvement is much higher.
How could this info help you? I’m hoping it will arm you with the information of knowing this possible potential and while not dwelling on it, just keep it in the back of your mind to watch out for. I didn’t know about “disease flare” cause by starting treatment or stopping treatment, neither did my dad, but hopefully now you all will know about it and file it away as one more piece of knowledge to help make it through your treatment. Should you notice a rapid progression of symptoms after starting treatment or stopping treatment, headaches, vision changes, nerve changes, changes to walking and coordination, rapid tumor spread after starting to stopping treatment, low back pain, or anything that doesn’t feel right, bring to your doctor’s attention. They don’t have to be all at once, or even all of them period, but if it doesn’t feel right to you, bring it up. Statistics show a lot of these symptoms are not often brought up, but kept to themselves. When in doubt, talk it out with your doctor sooner rather than later. A brain MRI and 1-2 lumbar punctures are a good starting point if no answer is found or doubt about what doctor says. Don’t accept being dismissed by your doctor if that happens either. It happened to my dad - I would not accept it. If you guys have any questions about this or leptomeningeal now or later on, I do still respond and try to help any questions that you all have asked me here and in private since my dad.
- Lisa
Written by
Lisam81
To view profiles and participate in discussions please or .
Lisa, so good to hear from you. Thank you for making us aware of “disease flare” and giving us this information. You are still a strong advocate for those of us in the lung cancer community.
Doing OK. Have a scan on March 12 and starting to feel that scanxiety. Your dad would be so proud of you. You were a fighter for him and now you are fighting for those still here with this awful disease. Side effects of treatment are bad. My reaction to Xalkori was to go into cardiac arrest. Fortunately, I was at the hospital when that happened and afterwards I developed afib which is controllable by medication for now and I also have to take a blood thinner. I continue to have fatigue and sleep problems, but I am learning to live with it. How is your mom? I still think about you two and how hard it is without your dad. Again, it is so good to hear from you!
Prayers and positive vibes for your scan on 3/12 - I think you will hear good news! I definitely remember reading your side effects and how scary that was! My dad was doing B12 shots for fatigue. He was undecided whether they helped though. Mom is completely lost without dad. I try to keep her going and positive. It’s hard when we’re both so sad but we are making it. Some days are way harder than others. Dad told me when he was in the hospital - “take care of your mother.” My dad has made his presence known in very bold ways starting 4 days after he passed. So much so that I now keep a journal of everything. He has not gone far from us... Please let me know how your scan goes. Hugs
Thanks for your positive vibes. Keeping a journal is a wonderful thing. I am sure you are doing a good job taking care of your mother. Sending love and hugs to you both!
It's so nice to from you and I hope you are doing well! I have thought of you and your Dad and know just how much your fought for him and for his care.
THANK YOU for sharing such important information. In this battle (and other serious illnesses), it's vital to speak up and keep your doctors aware of any changes in how you feel or how your treatments and/or medications are working. You also need to be a very strong advocate for yourself, or have a family member (like you), who is going to be there to fight for you and your care. As a Stage IV NSCLC patient who has was put on "Immunotherpay" and later suffered with side effects, I know just how important this is and sadly I see posts every day from patients or family who seem to be almost "afraid" to speak up or be firm with their medical team. It's a MUST and can save lives. These treatments can be wonderful but there are also many potential (serious and even fatal side effects). I just read a post yesterday in another forum from a women who had side effects from Keytruda and had NO idea that the treatment had so many potential risks. I was shocked, because I was well-formed of the side effects and also took the time to do my own researched before I agreed to try the treatment. I was so concerned that I initially declined it, but then realized it was my 'best chance' and I'm quite sure that had I not tried it, I would not be here now. There are "sadly" many risks in all treaments (old and new) and for most of us, the potential benefit of "living" (especially with Stage IV, is worth the risk). Despite the side effects, I still am thankful I gave it a chance.
Every patient and family member should always feel confident in sharing any and all concerns with their team. It's so important and I know you pushed so hard to get your Dad the best possible treatment, despite insurance denials and stubborn doctors. Your Dad was lucky to have you and I'm sure he's beaming down with pride in seeing how you have continued to help others.
I think of you and everyone on here often! How are you? I miss my dad more than words can say, every single day, and it’s not much easier as time goes on. But I feel like a part of the family on this forum still and I’m still out there doing what I can to bring awareness.
Everything you wrote is so true! And not just the side effects alone but the disease flare where any treatment that suppressed your body and then causes your body to ramp up can cause a rapid worsening of cancer and spread quickly into the meninges - leptomeningeal. I hate to admit this but after much research I believe that it was the clinical trial and the stopping of the clinical trial that caused a disease flare into the rapid leptomeningeal. It happened within 2 weeks. I know Moffitt had to submit a case report on my dad for the clinical trial as it being a possible cause of his leptomeningeal. BTW, not relevant to this topic but I’m still not over that Moffitt found out my dad passed in Orlando hospital, never called his family, never sent a card (a friend’s dad at Moffitt received a card), never acknowledged my dad at all. I found out they knew he passed when they wiped his name out of the portal. I guess they, or his doctor, didn’t have to acknowledge, but it would have been nice as he was in their clinical trial and signed papers to allow them to take extra tissue to help others after him.
Anyways, back on topic - some with EGFR can be helped with Tarceva for leptomeningeal from a disease flare caused by Tagrisso, but a lot do not speak up about the symptoms until it’s too late. So every symptom needs to be reported and insisted upon being heard if no one takes it seriously. You are your best advocate in your treatment!! I can’t stand to think of how many have fallen through the cracks because they didn’t speak up or advocate and receive treatment in a timely manner when it mattered most!
I'm doing ok, still stable, but still dealing with side effects. Taking each day as they come and trying to focus on good and happy things. I'm enjoying time with my family and friends, especially my precious little grand daughter. 💜
It's a shame that anyone slips through the cracks, that should never happen and it's upsetting to know it does.
I'm sad and sorry to hear that you were never contacted by anyone from Moffitt. 😔 Mynheart goes out to you and your family, it's so hard to lose family. Please continue to cherish your wonderful memories.
Thank you again for your advocacy and for sharing your research with us.
Lisa it's so good to hear from you. I know you didn't know about the leptomenigeal.the rest of us didn't either. That was really bad. I don't understand why Dr's don't tell people this can happen leaving family members stunned. I think it should be brought up to patients and family and everyone who has cancer. It needs to go viral so cancer patients and family know it can happen. Your doing a great thing by getting it out where people will know this can happen. Your always welcome and let us know how your doing. I thought of you like a daughter. Love susiejo
Hi! How are you??? I think of you often and wonder how you are. You are right - it needs to be talked about more and more people need to be aware. Maybe if more people were aware there would also be a bigger demand in figuring out a treatment for it, which we desperately need. I feel like family here so I’m still around. Big hugs 🤗
My heart was broken when reading of your dad's rapid progression. His cancer was very similar to my wife's. After a year of Afatinib keeping her metastases and tumor in check (but not decreasing in size), they switched her to Tagrisso. One month ago, they thought they would stay on top of her SVC syndrome with radiation. The swelling and inflammation from the radiation had nowhere to drain and she blew up like a balloon. They placed stents in her jugulars and superior vena cava, which also clotted shut. When her kidneys began to fail, they went back in and placed 'numerous' stents on her left side and around her heart. The right side is permanently closed, so everything now drains to the left. We now live with the daily fear of her 'throwing a clot' from all of the stents. She is in Chicago today to find out if the radiation or Tagrisso are even working. Her rare mutation has had little research... Thank you for your posting and providing all of the information on this terrible disease. Your insight is very valuable! Again, I send you my condolences and all the best for you and your family.
Good to hear from you. I keep you and your wife in my prayers. I’m so sorry to hear of her complications! It seems so much has happened since we last spoke. I completely feel for her... I know the struggle my dad went through with the SVC. The radiation did cause a lot of swelling for him. My dad was always a thin guy his entire life and not just from the cancer and he almost tripled in size from the swelling. I have never seen him like that in my entire life. The IMRT on the chest tumor by heart for the SVC and/or a combination of the brain and spine radiation and/or something entirely different caused him to massively swell. At one point they had a vascular surgeon evaluate my dad for an SVC stent in the hospital after he was diagnosed with leptomeningeal but they felt it was not needed yet. I was never definitively told that the swelling was caused by the radiation but I suspect it had a part in it. When they took him off the Lovenox for the lumbar puncture and left him off it for 4 days, it also allowed his svc clot to refill as well as I noticed his arm was so swollen and red and pushed for an ultrasound. They found a blood clot in his arm that developed when they left him off his Lovenox. My dad had previously had a consult with a vascular surgeon regarding the svc. He mentioned stents and that as long as he remained on the Lovenox it would be relatively safe. Is your wife still on the Lovenox? My dad did the twice a day Lovenox and I felt confident in the Lovenox controlling everything until they took him off for 4 days. If she does once a day Lovenox, check into twice a day. My dad felt the twice a day helped him more and I don’t know fully why he felt that way, but he did like the fact that if something happened emergency wise the twice a day Lovenox would be out of his system quicker. Clots rapidly developed and refilled when he was taken off the Lovenox for several days. The hospital put my dad on Lasix for swelling and edema during radiation. This helped with the swelling some and didn’t seem to have any side effects from it but he wasn’t on it long. With your wife’s kidney issues I would not recommend Lasix though. My dad rapidly developed leptomeningeal disease, but ultimately I believe he passed from the SVC syndrome and apparently the doctors do too as they listed it as the cause afterwards. Here’s why - when my dad was on the ventilator his blood pressure was coming up and great. So was his heart rate. He had also started making progress from the coma with opening eyes. The ventilator put pressure on his svc syndrome causing severe, severe swelling and edema. They had to turn my dad every 3 hours in the bed - right side, back, left side. My dad was always told to be careful laying on his right side because of the SVC. And laying flat on his back was so uncomfortable for him with the SVC all last year. He mostly slept in an inclined sitting position, propped up because of the SVC. So that day in the hospital the nurse turned him on his right side but not fully on the right side. It was at that exact moment his blood pressure went from great to almost nothing. And within minutes my dad was gone while I was in there and I have never been more confused as his vitals minutes prior were perfect. Now, my dad was fighting a huge battle with the leptomeningeal but it was when that nurse switched positions to the right side while my dad was severely swollen that plummeted his blood pressure and stopped his heart. I believe ultimately it was the pressure of the SVC and on the heart in the way he was turned. I don’t know if your wife is being mindful of how she is laying down, but I would definitely watch the positions and would recommend back sleeping in a propped up position. This position also would help my dad’s swelling in the face as the SVC would sometimes back up into his head and neck and cause swelling and large, stiff veins in his neck. He also constantly felt congested in the head. Something else regarding the SVC that we never got to determine in the hospital - my dad would have thoracic CT scans and MRI that would show the blood clot outside of the heart and SVC - standard oncology tests. IMRT shrunk his tumor on heart 30 percent. But one doctor in the hospital in early November last year called in a CT of his veins. Initially it was to check for clots. They injected the dye directly into his veins so that all of his veins would light up on the scan. Out of all the tests my dad had been put through since being diagnosed, this was the first time anyone did this type of test. This test showed his SVC with a clearer picture and from a much different perspective. The one doctor brought to my attention that it appeared that the tumor by the heart had grown into the SVC (even after the radiation) and not just wrapped around it or next to it. This is the first time anyone had ever said this or saw this, but it took the vein CT to show it. A week before my dad’s passing there was a back and forth discrepancy between this doctor and my dad’s radiation oncologist on whether it was the clot or the tumor that had grown into the SVC. We never did get to figure out the answer, but there was talk of maybe more radiation to his chest but his radiation oncologist said he wasn’t ready to make that call. I don’t know if any of this info is of use to you but I know there’s not a lot of people with SVC syndrome posting on here, so I’m trying to give you all the info on my dad and what we learned. Oh, another thing. Be extra cautious for symptoms of leptomeningeal. In theory, I have also questioned if whether the tumor so close to the heart and SVC allowed easier transportation of a cancer cell upwards through the blood brain barrier (thus leptomeningeal) because my dad’s SVC syndrome was a blockage draining upward. I don’t know if the tumor so close to the heart helped facilitate it upwards with the disease flare of the treatment being stopped. And it’s something I will never know the answer to, but it’s one theory I have.
Did she find out if Tagrisso and radiation is working?? Prayers for your wife and you - stay strong!! SVC is a marathon - slow, baby steps in the right direction and with the right cancer treatment I believe it can be completely managed!!
Thanks again for all of your information. It's been a long 2 1/2 months! I'm not finding much info on SVC syndrome, other than the statistics show that it rarely causes death. They say the cancer is fatal before the SVC. I beg to differ! My wife's cancer was being held in check, with only the SVC enlarging. She went from being perfectly functional--even playing tennis occasionally--to near death in a matter of days. I realize it was a result from the swelling from the radiation treatment--but SVC all the same. She had been on Lovenox twice a day for a year, only recently changing to a higher dosage once a day. She was also off it for the radiation treatment. Obviously, she's back on it twice a day. With all of the stents placed, she needs it. [The hospital pharmacist tried to get her to change to a cheaper alternative (pill)--to save us money--before they would discharge her. She demanded the Lovenox!] The Lasix helped her swelling when her kidneys began to fail. They're functioning now. She's undergone numerous vein scans, which show that all but the right side stents are open. Her right side has only small vessels open. The right side swelling is more or less permanent, with only painful use of her right arm due to limited blood flow (no more tennis). We bought an adjustable bed so she wouldn't have to use so many pillows to sleep. I hope her breathing gets better. On Thursday, they drained nearly 7 cups of fluid from her lung (it weighed 8 pounds!). The CT scans also showed that the Tagrisso appears to be working, which they didn't expect. They've labeled her as 'stable' and will re-scan in 2 months. In the meantime, they are analyzing the fluid to figure out where it's coming from; and are proposing a surgical procedure to stop the fluid build up. If not, they will place a permanent portal for drainage.
I know this has been a long update, but you have been so valuable to us. If this post helps even one person, it's well worth it. I am now vigilantly watching for disease flares as well as leptomeningeal disease. I also told her to stay off of her right side. Praying that the Tagrisso continues to work. She is EGFR+ with an 18 deletion (3%--rare). She was also told that she qualifies for a clinical trial that is soon to be approved. Hopefully, the SVC syndrome will stay in check! Thanks again, Lisa, for all of your information. Keep the prayers coming! One day at a time...
Hmm, I’m not sure I can say I agree with what you’ve found on SVC and I see you don’t either. Seeing my dad, I would say outside of the leptomeningeal the SVC was the scariest, riskiest, most stressful and severe complication of the cancer. It is highly risky if the tumor continues to grow onto or into the SVC so, as you know, stopping that tumor from growing and shrinking it as much as possible is of utmost importance. Pulling that tumor off the SVC as much as can be can possibly reduce some of the SVC symptoms and make it manageable long term. The risk is that tumor continuing to enlarge. In my dad’s case, radiation was withheld initially because the clinical trial shrunk it slightly and his cancer was held stable until 9/27 when scans showed the tumor on the SVC enlarged slightly and was no longer stable. He had 10 IMRT treatments to the chest tumor after that. The radiation oncologist stressed to my dad that if he didn’t get radiation ASAP it would definitely be fatal for my dad as the tumor was bound to collapse the svc and cause immediate cardiac arrest. I’m sure each SVC case is different though. We were told a stent wouldn’t stop this if the tumor grew into the SVC which it may have been doing but was still unconfirmed. My dad’s breathing was not the best as well from the SVC. As time went on, little actions caused him to breathe harder and worse. The fluid they found in your wife’s lungs could also be the cause of her breathing. Has she been diagnosed with COPD? This can also cause fluid in the lungs. In the hospital my dad was doing breathing treatments to help his breathing and help expel phlegm and fluid from the lungs. At one point he was doing 2 treatments for 10 minutes each a day in the hospital. This was ordered by his pulmonologist as I had my dad establish with one months prior. Has your wife seen a pulmonologist? If not, I highly recommend that she establish with one. This doctor turned out to be very valuable to my dad, especially when he was in the hospital.
Also, I would recommend checking into doing the larger Lovenox dose split into 2 shots a day if your wife can handle that. If for nothing else than this - the twice a day shots last 12 hours each, the once a day lasts 24 hours. If your wife had an emergency situation arise that required an emergency procedure they cannot reverse Lovenox and most have to wait the 24 hours. But if she is doing the twice a day they can withhold the second shot and/or wait just a few hours for it to be out of her system as opposed to 24 hours. It was a safety factor for my dad in case of an emergency situation. So he did the Lovenox at 8 am and 8 pm.
Also, I’m wondering why she was taken off Lovenox for radiation? My dad continued Lovenox twice a day through all his IMRT treatments for the SVC as well as through whole brain radiation and spinal radiation. I know you said her blood clot was better last year, and so was my dad’s when he went into the hospital on 10/16. They called his clot a “residual clot” but he was left off Lovenox for 4 days for the lumbar puncture when he should have been left off only 1-2 days. My dad swelled so much it was unreal. Everyone said his clot was fine and didn’t fill back up. It took his radiation oncologist to go back and review all his scans closely of the clot. What he found was being off the Lovenox for just 4 days allowed my dad’s 5 inch blood clot outside his heart to fill right back up. It was no longer a residual clot and that’s why he was right back to being so swollen. So essentially we went right back to where he was in July. If she was left off Lovenox for radiation and longer than a few days, it’s very possible her large blood clot refilled like my dad’s did. Has she had an ultrasound of her arm to make sure she has no clots in her arm? When my dad was off Lovenox I pushed for an ultrasound of his arm. They found another clot there just from the stopping of Lovenox.
If this was my dad, I would feel very confident in trying Tagrisso! So keep the faith - Tagrisso has worked miracles! I wanted it badly for my dad with the leptomeningeal but he didn’t have the EGFR. I found it could have helped him still but no one would do it. Praying for you both and please let me know if I can try to offer any further help! 🤗
For months, the University's 'tumor board' debated whether her SVC area was a tumor or not. When everything else was stable except for this area, they decided to biopsy. Just after Thanksgiving, she had robotic assisted surgery, where they deflated her lung and went in through the side of her chest. The cells came back as non-cancerous scar tissue. (This is when they changed her Lovenox to just once a day.) In January, she started radiation treatment. They doubled her radiation level and did just 5 sessions, making it 'easier' on her. (They did not stop the Lovenox for this as I previously stated. It was when the swelling became uncontrollable and the 3 initial stents were placed that they had to stop the Lovenox.) Obviously, she's now back on the Lovenox injections at 8a and 8p. There are no clots in her right arm. Her right jugular is permanently closed and all right side blood/drainage must travel to the left side, thus, the increase in right side swelling. She really has no breathing issues other than a persistent cough, which gets worse if she bends over. Her Pulmonolgist insists that he can stop the fluid build up, which is our next hurdle to clear. After reading your previous posts, a dedicated cardiologist is the only specialist she needs on her team. Thanks again for all of your help!
Thank You with all my heart for sharing your Dad's story. I am sure he was a lucky man to have you for a daughter. You are truly and advocate for all of us. I have stage IV NSC Lung cancer and EGFR + 19del. Been on Tagrisso since my diagnosis in Dec.2018. My first scan showed an overall improvement of greater than 60%. I have local metastasis meaning no other organs nor brain are involved but always worried of spread to my brain or other organs. Many Thanks and all the Best!! Hugs and Prayers... Basha
Thank you so much for your kind words. I see you said you’re stage IV but no metastasis outside of the lungs - are your lymph nodes affected? Stage IV has metastasis beyond the lungs to other areas so I was just wondering if you don’t have that, if that would make you a lesser stage? When my dad was diagnosed he had one tumor in one lung, and one small tumor in each adrenal and was stage IV. 60 percent improvement is amazing for such a short period of time! You should feel so encouraged by this!! Keeping you in my prayers for Tagrisso to get rid of it all! I have read some amazing things about Tagrisso. 🤗
Thank you ! Lisa!! I had malignant plueral effusion in the Left lung. had a 3.4 x3.2x 2.2cm tumour on the top left lobe with metastasis to plueral lining, plueral cavity, 2 lymph nodes in mediastinum, 2 lymph nodes in the upper left abdomen, one nodule by aortic arch, multiple tiny nodules in outer area of the right lung. After 2 months on Tagrisso 80mg, my primary tumor shrank 70% 1.8 x0.9cm, all lymph nodes and tiny nodules completely resolved, and the nodule by the aortic arch reduced by 49%. I am looking forward to my 2nd CT scan by end of April. Please keep in touch. Love and Hugs!! Basha
What an amazing blessing this treatment has been for you! I am truly so happy for your current success with Tagrisso!! Please update on your second scan in April! Hugs and positive vibes being sent your way - you CAN beat this!! 🤗
Thank you Lisa. For me, this was good info. I have NSCLC with Mets to lymph nodes, brain, liver, mediostinal area, and spine.
On my last hospitalized, I questioned two glaring occurrences that occurred by the doctor that was assigned to me. Due to crowding issues, I unfortunately was NOT placed on an Oncology floor for the first two days of admit
Bottom line, when my Oncologist came to see me, she seemed to be extremely upset with me, cutting me off when I attempted to speak, ....simply NOT a ting like the kind doctor that I had been dealing with for past 4 months since my diagnosis in September 2018.
The experience shook me so that I have considered changing Oncologist. However, my insurance dictates where I go and who I see. My Oncologist comes highly recommended and highly rated.
When I attempt to voice increased side effects or other problems, I feel that I am ignored, or interrogated, or simply not believed. I truly feel that now, I have no Oncologist. And yes, I now keep my aches and pains to myself.
At any rate, I thank you for all of the great info you brought to the table. It may not hell me but it is sure to help someone.
Oh goodness, I hate to hear this because I know how it feels when it was done to my dad at certain times. In the hospital, a qualified, highly rated doctor came in to see my dad. While on paper he seemed good, his bedside manner was horrific. He was demeaning, negative, sarcastic and just awful. Despite the fact his reviews and credentials said he was great, he was still not the doctor for my dad. In fact, my dad felt so put off by this doctor that he said he didn’t want to interact with him ever again and we never had him back. I feel an excellent doctor is so important but also so is their bedside manner and how well they listen to you. They are not treating a common cold. This is obviously more serious than that and you should feel comfortable and confident in your oncologist, knowing they will take your symptoms seriously and listen to you. Those doctors are out there! Are you able to review an insurance approved oncologist list through your insurance? What I did for my dad was write down all approved doctors in the field I was looking for and then I sat at the computer and thoroughly researched each one. I then circled all that I liked for my dad. Insurance should allow second and third opinions but call them and ask questions. At Moffitt, I went straight to the director of thoracic oncology and wrote an appeal to him to take my dad on. He ended up accepting my dad as his patient but he also took my dad’s insurance. But I would first start by reviewing all approved oncologists through your insurance, research and circle ones you like (top 5) and find out about second and third opinions if you schedule an appointment with one (your current oncologist doesn’t need to know you are going for a second or third opinion unless you want to tell them). Please don’t settle for an oncologist who makes you feel like you have NO oncologist!!! You and your health are worth way more than accepting this. The oncologist should work FOR you. ❤️ All my best!
I was aware of disease flare but never knew it could cause such dramatic disease progression. Several of my friends have written about their concerns when they went through the transition between drugs now I understand their fears much better.
Is there any possibility that the cancer cells had already mets to the meninges and that his treatment was holding it back? Just a random thought.
I’m grateful that you choose to continue helping patients and caregivers here and sharing your knowledge. I believe choosing to do this also helps you heal. Have you been able to reclaim some of the life you had before your dad’s diagnosis?
Hi Denzie! ❤️ One such study - a lady was on Tagrisso for a while and was just coming off it to switch to another treatment. Within a week she had headaches, gait difficulties, back pain and did not know what was happening to her. She first kept the symptoms to herself and then ended up in the hospital rather rapidly. She was on a feeding tube and ended up slipping into a coma. They determined she had rapid leptomeningeal disease caused by a rapid disease flare brought on by the cessation of Tagrisso. They ended up crushing Tarceva and feeding the crushed pills through her feeding tube. She ended up coming out of the coma, improved daily and left the hospital with resolvement of the leptomeningeal. So in some, disease flares brought on by Tagrisso are being helped by Tarceva to reverse the disease flare.
Also, I have contemplated the idea that the SVC accelerated the cancer cells upward through the BBB or that the cells were already floating through the CNS fluid before and the treatment was holding it back. It is definitely possible and I’ll never know for sure. But I do know that my dad had several brain CTs and MRI and all were the exact same as at diagnosis. It was the one a week after the stopping of treatment that changed along with the horrible headaches and back pain etc. It also was too rapid, and in just about 8 months from his diagnosis after he had been held stable for all of those 8 months with no further metastasis anywhere since diagnosis. I do know Moffitt filed a risk report with the state on the clinical trial my dad was on due to the rapid leptomeningeal within 2 weeks of stopping treatment. I feel there is more to my dad’s story, one we will never know 100% on, but one that needs to be investigated further and more disease flare and leptomeningeal awareness possibilities. Stats say 2-5% for leptomeningeal but autopsies show those stats are much higher but never diagnosed. And we don’t really have a treatment yet. Even more scary.
Life is day to day. It’s definitely not normal, but it’s also not the normal I lived last year helping my dad. I’m somewhere in between right now. I think it’s a process and a lengthy one at that. And I doubt I will ever be the same prior to 2/28/18 and definitely not the same after 11/20/18 but I’m settling somewhere in between right now, if that makes sense. And my dad would want me to continue trying to help others as he so trusted me to do for him. So I’m trying to do what I can. ❤️
So sorry for your loss...🙏🏼😔.....my husband has stage 4 lung cancer same like your dad but has metastasized..when we found out it was metastasis ...be strong...he is at peace now...and we will fight it to the end...❤️Thank you for posting
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Stage 2 lung cancer
Stage IV Lung Cancer Diagnosed/ Life Expectancy 
Stage IV lung cancer
Dad w/Stage 4 Lung Cancer
Anniversaries, Cancerversaries, and Milestones of Lung Cancer Treatment and Survivorship
