Rower Michelle

You may also want to look into the cookbook by Rebecca Katz, The Cancer Fighting Kitchen which is designed for managing the side effects associated with chemo. I found the recipes pretty tasty and the chemo tricks while counter intuitive actually worked.

A belated hello from me. Kevin it sounds like you’re doing all that you can and obtaining a second opinion at Moffit is a good idea. You may not be aware there is a patient advocacy organization dedicated to MET called “The Met Crusaders”. You can find them on Facebook and Twitter. It’s an excellent resource for real time peer support. Michelle

Hello Paul, I’m sorry I somehow missed your post. Like Ron, I have the ALK Mutation too. The initial biomarker testing missed the ALK-fortunately my oncologist had two other patients with ALK and sent my biopsy for comprehensive biomarker testing at Foundation Medicine. Who knew there was four tests for ALK? Anyway I’ve been on Alectinib for three and a half years now. In addition to the ALK FB page, there will be an in person conference in Denver. I went in 2019 when it was in Atlanta and made many lasting friendships. The fact you have a low PDL actually is good news as emerging research indicates that patients with a PDL 1 under 50% have a longer response on targeted therapy. I’m sorry you’ve had to go through all of this but now you’re on a good path! @RonH are you coming to Denver?

I’m so sorry you’re on this horrible roller coaster ride. The circumstances were very similar at the time of my stage IV diagnosis. In order to stop the rapid clinical decline my oncologist opted to give me one round of a chemo/immunotherapy cocktail while we waited for the biomarker testing. That decision probably saved my life. Nowadays a chemo combo of Carboplatin and Altimpta would be administered without the immunotherapy. That was four years ago and I’m still going on the first line of targeted therapy. Hang in there and keep asking questions…. We’re here for you.

Hi Emily, Personally, I wouldn’t want my parents taking two lung cancer drugs in their 70s. Avastin is not a easy chemo on anyone, even younger people. Your mom can have an excellent quality of life on Tagrisso for years. In my support group there are two 70+ people on Tag for almost four years now with their disease well controlled with minimal side effects. I’m very surprised the medical team would even consider such a trial unless they believe exon 21 would be less responsive to Tag alone. It seems like an unnecessary risk to put an elderly person through.

Hi Oceana, Welcome, you may want to check out Facebook, there is a group called the KRAS Kickers where there are a number of people who have been on targeted therapy. Many people find the FB groups quite useful.

Judy is always a good resource for these types of issues. In addition some people have also used Manuka Honey with a high floral count US equivalent of two teaspoons twice a day in warm water to aid the healing process too.

Hi Lizzie, Freight train is a good way to put it and at the same type it’s so important to have a complete diagnostic picture before the treatment plan gets rolling. My oncologist moved very quickly too because my condition was deteriorating rapidly. The triplet was first followed by the port. That was three years ago and now, it can be done a little differently. There’s a couple of questions I would recommend asking since the biomarker testing isn’t back yet (?). Ask about the reason for including Keytruda in the chemo combo. If you have a biomarker, your targeted therapy could be delayed to allow for the immunotherapy to wash out of your body. Keytruda and targeted therapy often don’t mix. Some people are getting the Carbo and Pemedtrexed alone for the first infusion. Also if you do have a biomarker, then a port may not be necessary either. Here’s a short version of what happened to me which admittedly is uncommon: I got the B12 shot and one week later the triplet. The following day after my first infusion I received the port. The port install was a Friday morning. Unfortunately I had a complication. It was messy. After the triplet my symptoms worsened. The cough increased, then I broke a rib. Just before the second scheduled infusion, my biomarker came back as ALK Positive. Had we known that sooner we would have held the Keytruda as it’s not effective with ALK and all it did was worsen my symptoms. Fortunately it had been three weeks since the infusion so it was safe to start targeted therapy. Then the port came out, it was never able to be used. It took a little over a month to heal. Again, this is atypical but if we had to do it over I would have skipped the Keytruda and the port until the biomarker testing was confirmed. So the two questions I would ask your oncologist is: In the absence of the biomarker results: 1. What is the purpose of Keytruda? 2. Is the port necessary before the first infusion or can it wait until the biomarker comes back? The other issue to consider is if your doctor is not at a National Cancer Institute (ie Johns Hopkins in your neck of the woods) then you may also want to consider a second opinion. Lung cancer has become highly specialized having an expert opinion is very important. I was diagnosed at a very reputable hospital system in the KC Metro. The proposed treatment plan was the triplet, but we got a second opinion with additional biomarker testing (called NGS- next generation sequencing). The NGS identified the ALK mutation where the “standard biomarker” testing did not. These early days are dizzying, knowing what questions to ask and the process helps to get a little settled. Good luck next week and let us know how you’re doing. Michelle

Hi Lizzie, We’ve all been there. Although it might sound odd, you’re one of the fortunate people who had a physician that made an accurate diagnosis. Many of my friends were in physical therapy for months (and in some cases over a year) before their lung cancer was finally diagnosed. There are many different types of adenocarcinomas- treatment is tailored to what Tom pointed out- the biomarker. It’s not unusual for women under 60 to have one. It’s important to remember that diagnosis is not prognosis, I received a stage IV diagnosis three years ago and I’m in remission (no evidence of disease). In the beginning we all feel like the Twilight Zone, brighter days are coming so hold onto your hope. Michelle

Good luck to you. One of the resources you might want to check out is a book by Rebecca Katz called “The Cancer Fighting Kitchen”’. It’s loaded with good recipes and tips for managing nutrition during chemo. I found it better than any of the hospital hand outs. Keep us posted.

Great advice as even here in the US the health system isn’t as efficient as it should be. A good strategy is to eliminate the word “wait”. If something doesn’t look or feel right, rather than waiting for a situation that may or may not sort itself out, it’s better to be proactive and start asking questions.

See if you can find some Manuka honey with tea which does wonders for post procedure sore throats. The higher the floral count the better. Good luck!

Yes. Indeed that is good news!

Hi Justin- We’re all too familiar with the whole waiting thing- it’s not easy for any of us. There is a process and it never moves as fast as we hope it would. It seems like things are moving along as best they can so hold on as best you can.

Hey Barb- great to hear from you! Dad said they are all okay In Bloomfield. They got a little bit of water in the basement which wiped out the pilot light on the water heater. This was the first house repair issue since Mom died. He managed it well enough. Glad to hear you are doing well!

Hey Roseann- was thinking about you when the Lands End Fall catalog arrived the other day. 40% off, time to start shopping!

Just to give some perspective as to how fast the research is moving…. Three years ago I was told upon learning my stage IV diagnosis to get my affairs in order…quickly. New biomarker methods identified a mutation the “old” testing missed. So hold onto hope there’s a new horizon for lung cancer survivors.

Hello and welcome, Thanks for joining our group. A few of the members in my LC support group have had PEs shortly after diagnosis, they were all hospitalized for at least a week to receive IV blood thinners and were discharged following a confirmation via CT scan the clots were responding before going onto Xarelto. Unfortunately this is a common situation. It is serious condition but treatable condition that requires long term medication. With a stage IV diagnosis, SSDI will be approved, there is a six month waiting period before payments can be received and two years before Medicare eligibility. It’s possible to work and earn a small amount of money each month. The best source of information is contacting the Social Security Administration directly as the internet is loaded with misinformation. You’ve been through a lot this summer- I hope your scans go well for you. Keep us posted. Michelle

Hey there! I miss your jokes! So glad to hear that you’re doing well! I can’t believe how many years it’s been. That’s great news! I hope you had a fabulous summer at the farmer’s market!!! Carry on… Michelle

Hi Justin, I was diagnosed with lung cancer at the age of 51, three years ago. I’m grateful for all the research as I’ve been in remission for almost two years now. There is life with lung cancer, it’s a roller coaster in the beginning for all of us. One of the books I read early on was written by long term lung cancer survivor, Greg Anderson: Cancer- 50 Things to do. For me it was a good road map on how to sort through the chaos and find a way forward. Anyone with lungs can get lung cancer… as Lou said, no one is alone here. Step by step we will help you find the brighter days ahead. Michelle

Wonderful news!

Hey Barb! It’s a weird anniversary someone outside our circle of friends here would understand so a big hug of congratulations to ya!!! That’s great!

Hi Mike, Welcome to the Durva Club. While I'm sorry you find yourself here, this is a good place to learn from a number of others who have crossed the Durva finish line. I'm very familiar with Jane's program. Here is the US, it's considered fairly controversial. She's a big supporter of Metformin, and I've had physicians over here in the US take a deep dive into the research. It's all inconclusive. Supplements with lung cancer treatment can become very tricky. One of my peers took a DIY approach and ended up unintentionally impacting the effectiveness of his treatment plan because it washed the chemo out of his system too quickly. I am treated by a Board Certified Physician in Integrative Medicine. There are a number of supplements that I take that were reviewed and approved by both my clinical pharmacist and my oncologist. My oncologist will generally go along with what the pharmacist recommends. I am taking one off label drug, Low Dose Naltrexone (which is mentioned in the footnote of Jane's book). LDN does have clinical evidence to support it's efficacy. I've been taking that now for two and a half years. My labs and supplements are carefully monitored. In the beginning as my treatment plan was initiated there were quite a few and as my cancer stabilized, many of them were discontinued to hold in reserve if there is a recurrence. I think physicians's attitudes are starting to change about some of the alternative/integrative medicine approaches. I've had lengthy discussions with my oncologist about this, at first he was skeptical, then he was curious, and now he says, let's not do anything different without talking to your Integrative Doctors. Here's a resource from NY, Memorial Sloan Kettering for you to take look at: https://www.mskcc.org/cancer-care/diagnosis-treatment/symptom-management/integrative-medicine/herbs I hope you find this helpful. Michelle

Hi Susan- wow that post was a looong time ago! I’m still here, in remission, 27 months on therapy. Never let go of your hope!! Michelle

Exact same story here! I ordering the M or L then return whatever doesn’t fit!