Rower Michelle

Hello- I’m sure someone on Tagrisso will weigh in here.. I’m on a different targeted therapy and had success with Cymbalta 60mg, originally marketed for depression, turns out it’s far more effective for neuropathic pain. Others take Claritin, the allergy medicine. Oncologists aren’t great about side effect management so you may want to inquire if there’s a palliative care doc on staff- or ask the oncology pharmacist for guidance. No need to tolerate the pain when there’s a solution out there… I also do acupuncture, it’s expensive but effective. Michelle

Hi, I’m from Bloomfield NJ, have been taking Alecensa for ALK positive lung cancer for 4 1/2 years. While pneumonia may be a potential side effect, it is very good for quick symptom resolution. There are other options in the same drug class and I would recommend a second opinion right away. Where is Mom treated now? There are great options available, don’t lose hope. Michelle

Hi Michael, I was diagnosed with ALK nearly five years ago now at Stage IV; have been on Alectinib for 52 months with clear scans. The brain fog and memory issues are very familiar. They are a common reported side effect for many of us. I have a few ideas depending on what's available at your center: 1. Ask for a palliative care referral; it's a misperception that palliative care is for end of life. Today palliative care teams are trained to assess and treat side effects. Oncologists really only treat the cancer; not the side effects. Sometimes a short course of Ritalin/Adderal might help. 2. Some of the larger cancer centers have post treatment cognitive rehabilitation programs to reduce brain fog and improve memory. That might be worth checking into. 3. You might want to check into seeing a board certified physician in Integrative Medicine for Functional Medicine. Here is an article on how to locate one: https://www.drweil.com/health-wellness/balanced-living/healthy-living/seeking-an-integrative-medicine-physician/ I had some pesky lingering side effects that the palliative care doc and the integrative care doc couldn't figure out. So I persisted and found a functional MD who actually did finally get to the bottom of it all. It's important to find a board certified MD as there are a lot of quacks out there. 4. Finally, you might want to consider acupuncture with a licensed Chinese medicine practitioner (not the kind you find at a chiropractor's office). It's expensive but sometimes covered by insurance. In my opinion, it's been pretty helpful. If you haven't already found the ALK Community, they have pages on Facebook and a website at www.alkpositive.org Hopefully some of this will be helpful for you to consider. Don't give up... keep talking to your doctors. Michelle

You might want to start here: https://www.lungevity.org/for-patients-caregivers/lung-cancer-101/types-of-lung-cancer/squamous-cell-lung-cancer It is rare for squamous cell to have a biomarker, it’s typically not done & insurance may not pay for it however it’s worth asking the oncologist about.

Hey girl! That’s fantastic! So our resident “yogi” does indeed have a wild side! Let the good times roll! PS & yes- we all remember walking through this with you- it was not a piece of cake for sure and you got through it!

Hi Annie, Welcome here. I would suggest getting a second opinion as soon as possible. While it’s rare for SCC to have biomarkers it can occur. Chemo/Radiation is the standard of care AND so is at least one year of immunotherapy. To suggest otherwise contradicts the NCCN guidelines which establishes the treatment plans for all cancers including lung. Lung cancers in the never smoker population are complicated and really need an expert opinion. Personally you’re not far from John Heymach MD at MD Anderson’s and I would suggest you reach out to the Go2Foundation and Lungevity Help Lines to line up a second and perhaps a third opinion. Getting the treatment plan right out of the gate is really important. Keep us posted…. We’re here to help! Michelle

The insurance company!!! We all know too well. The only course is to fight back. First off your doctor can file an appeal and if your insurance is employer based then you will need a file a complaint with Human Resources. Most of the time when HR gets involved the insurance company backs down. If all else fails then file a complaint with the State Department of Insurance. The treatment combo proposed is totally reasonable. If by any chance your insurance company uses a vendor called EviCore, we call it EvilCore and complaining on social mediapart of the wall of shame also works. It shouldn’t have to be this hard but sometimes is. Generally it all works itself out so try not to stress too much about it

Hi, Although I live in KS, I was born & raised in North Jersey. (Exit 150). My stage IV diagnosis came as a complete shock as I had no known risk factors and was very ill by the time we finally got it all sorted out. That was four years ago, I’ve been in remission most of that time after the ALK mutation was discovered. I had a similar chemo regiment- Carboplatin, Pemetrexed & Keytruda. I had one round that showed the lung tumor shrinking but the lesion on my spine increased. I was also allergic to the chemo- in addition it triggered a all things maple allergy. Fortunately the biomarker test came in just before round 2 of chemo. The second opinion physician sent biomarker testing that was pretty sophisticated because the first round totally missed the ALK mutation. Do you know what mutation you have? Obtaining a second opinion is a great idea as that MSK location patients have reported mixed satisfaction and many end up at UPenn or Fox Chase. Lung Cancer is very sophisticated and going to a big name cancer center isn’t always the best choice, many physicians specialize in mutations. You might want to consider contacting the Go2Foundation to learn about The Lung Match Program. I’m so sorry you find yourself here- there are a number of young mothers you can also learn from at www.thewhiteribbonproject.com. For reasons unknown young women are being diagnosed with lung cancer- some are in their 20s. Google around for the story of Emily Daniels in Denver. You might also find a dedicated Facebook page of young women too. Hold onto your hope and leave no stone unturned. There are many long term survivors and it’s up to us to stay on top of the research-there’s too much for the doctors to stay on top of. Dr Google as we call it is not our friend. If you’re on Twitter you might want to follow Steven V Liu MD, Christine Lovly MD and Drew Moganaki MD. Twitter is a pretty good resource for research. Many pages are dedicated to biomarkers. Let us know how we can help and keep us posted. You can do this… Michelle

This sounds like my story! So no, don’t waste any time in advocating for a low dose CT scan. I had three months of antibiotics, inhalers and steroids— 4 different doctors, 13 appointments with diagnosis such as sinus infections, allergies, whooping cough, acid reflux, fungal infection, bronchitis, atypical pneumonia, pulmonary embolism before I had the CT scan. Everyone was shocked when the biopsy revealed a stage IV lung cancer. It wasn’t ever considered. Unfortunately my story is shared by many. Our thoughts and prayers are with you and the best way forward is to demand the scan. Please keep us posted. Michelle

For any friends living in the Boston area, here is a very last minute opportunity to join The White Ribbon Project and the American Lung Cancer Screening Initiative tomorrow morning at the Kennedy Library. President Biden will be speaking about the Cancer Moonshot Program and a number of college students from Harvard and BU will be there with their iconic white ribbons. We've organized for interviews with the media. Any and all help is appreciated as we work together to raise lung cancer awareness and break the stigma.

Right on Judy… I grew up on top of the Essex Toll Plaza. ‘Nuff said.

So happy to hear from all my dear friends!

Very wise Laurel, “stay positive” “stay strong” should be on the list of what not to say at this point of time. It’s okay to become unglued, it’s important not to bottle up the emotions. Even though it doesn’t feel like it now, it will get better… in the mean time we’ll all be here to carry you along the way….

Hi, I’m from KS too. Lou has given you a really nice summary of how to start to get your head wrapped around this. I was diagnosed with Stage IV lung cancer four years ago at the age of 51 and today am no evidence of disease. With all the treatment advances, diagnosis is not prognosis. You can get great care in rural KS without having to trek to the KC metro. The most frustrating part is all the waiting as the medical system doesn’t ever move as fast as we want it too. From diagnosis to treatment plan typically takes 4-8 weeks. Take one hour, one day at a time. We’ve all been there and we’re here to say that you can do this. Brighter days are coming.

It’s always and good idea to get a second opinion. It’s also important that to honor your mother’s wishes in terms of what she wants relative to how she feels. Some times additional treatment may have unintended consequences so it’s important to ask about treatment toxicity. When my mother’s team initially recommended hospice no one in the family wanted to accept the recommendation but she wasn’t eligible for any clinical trials or compassionate use. If there is a social worker in the clinic, that could be a good resource in helping to guide the decision during a difficult time. I’m very sorry your Mom is going through all of this. It’s a hard situation. Let us know what you both decide.

That cough. Yeah, could be a number of related things: immunotherapy and radiation can prolong the cough. I did develop post chemo allergies and like Judy take a daily Claritin (Zertec made me too drowsy). Acid reflux is another common culprit that needs to be evaluated- I mix two teaspoons of organic apple cider vinegar with a tablespoon of fresh lemon juice, 8oz of water and a little bit of stevia with dinner and that took care of acid reflux and morning phlegm. All of this is a way of saying everyone responds a little differently and eventually it all gets sorted out when the symptoms are reported to the doctor. Always important to remember it’s not complaining but explaining.

Still NED here too!

Hello there! A few of my. friends are on Tagrisso and they all have an issue keeping weight on. It's a constant battle. The best guidance they received was to incorporate high calorie/high fat foods into their diet. Unfortunately, it's not the fun list most of us think of. Tricks like adding an avocado to smoothies (the whole one; not half like most recipes suggest). Chia pudding with almond milk (google around some recipes); ground flax seed/ground hemp seed with applesauce, nuts and nut butters, Walnuts, almonds and macadamia nuts are pretty high in calories. You can sprinkle chia seeds or others nuts into oatmeal. Getting adequate protein is important. All of this means is that you will have to eat even when you are not hungry. If you have no appetite; or poor appetite; my friends have gotten synthetic THC from their palliative care teams to stimulate the appetite. It's great news you picked up on this because; you're correct in that the oncs don't like to see weight loss. I've been told by my team that a healthy cancer weight is 25lbs above my normal adult weight as "an insurance policy". So you might want to ask about your weight targets.... Good luck and keep us posted! Michelle

Hi Debbie- Jersey Greetings to you. I was born and raised there; it's still my home as that's where my family is. I was raised in Bloomfield and my husband and I lived out in Sussex. I can appreciate your angst as the local medical care there isn't easy to access and Newtown Memorial isn't a National Cancer Institute. Jersey has one NCI- down at Rutgers, which is a hike from you. I've been a member of this Forum for years now; most people out in Sussex and Warren do end up making the trip into the City where there are better experts at a Comprehensive Cancer Center, which has access to all the latest protocols. Lori has given you some great advice. I suppose taking the bus is the best option rather than facing the traffic. If you're looking for something more local; my mother didn't want to go into the City and got good care from St Barnabas Medical Center. Memorial Sloan Kettering now has a satellite office (exit 160) and that's a bit of a hike too for you, but still a potential option. As Tom pointed out, you're early into this and the most important thing you will need to learn after the biopsy, if it's lung cancer, to find out specifically what type of lung cancer you have. There are many types that can only be identified by biomarker testing (also called genetic testing and a number of others). Once you have identified which type of lung cancer, then you can be matched with a doctor who specializes by sub-type, Like you I was a never smoker; my symptoms went misdiagnosed for a long time. I have a genetic rearrangement called ALK, I see a physician in KC who specializes in never smoker lung cancers. It's a shock to all of us because no one is looking for lung cancer in non-smokers. The first few weeks are dizzying but things do settle down and you've now made a whole bunch of new friends that are here to help you get through these tough times. Michelle

Hi Barb!!! Same for me-scans on Tuesday, coming up to the four year mark… hard to believe that most days I don’t think about lung cancer at all on some days… just carry on as best I can! Michelle

OPAL!!!!! So nice to hear that you are doing well. We "walked" side by side through the scariest of times (plus the pandemic was rearing it's ugly head). Yes, you are the perfect example that there is life on the other side of this. Jersey girls are tough!!! Love and hugs... Michelle

Hi Jack-- On occasion we've heard about people exploring the Joe Tippen protocol; but have yet to hear about anyone who actually went forward with it. Let me know what you think about it.... I've always been curious.

Have you found the KRAS Kickers on Facebook and Twitter? They have an excellent organization here is their website: https://www.kraskickers.org

Hi from me too June- Your story is so similar to mine- I had an undiagnosed cough that went on for months with multiple physicians and treatment plans. Two chest X-rays, two CTs, before we finally got around to the shocking diagnosis. We hoped the biopsy would identify a fungal infection. No one was looking for lung cancer in a competitive athlete who was 51 years old. In a few weeks I will be celebrating my 55th birthday, a milestone that I didn’t think was possible when I was diagnosed in 2018. Nothing about this disease is easy but we’re here to say you can do this. Life will eventually settle into a new normal. Believe it or not there will be a time when you’ll be able to say you didn’t even think about your cancer. Brighter days are coming. Michelle

Hello and Good Morning, We all understand the shock of this diagnosis coming out of nowhere. I too am ALK Positive, diagnosed in 2018 having been on Targeted Therapy and in remission while taking Alectinib. I’d like to point out the importance of obtaining a second opinion as it is well known here in the US that immunotherapy is not effective with ALK and their could be serious clinical complications. Just last month, ALK expert did a Q & A about the very question your doctor has regarding treatment with curative intent. I’m hoping that you’ve had a brain MRI as that’s a requirement for all people with ALK many of whom are also under 40 years old There are many resources for ALK- on Facebook the ALK Positive Support Group, the website, www.alkpositive.org , and the annual conference is this month you can register for virtual or attend in person In Denver CO. https://www.alkpositive.org/alk-summit-2022 ALK is very rare and requires expert opinions to have access on the best treatment plans. People diagnosed with ALK can live a very long time with a high quality of life. Let me know if you have any questions. It’s scary in the beginning but I’m here to say you can do this. We’ve got your back. Michelle