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Rower Michelle

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Everything posted by Rower Michelle

  1. Hi Judy Losing a father, at any time under any circumstance is traumatic. I am so sorry. I can totally relate to the health care delivery system forcing a transition to hospice. They did it to my mother this Spring-it's was horrible experience for everyone. The grief and guilt go hand in hand and will for some time. I actually took advantage of my clinic's Onco-psychology program to talk through the profound guilt I felt in failing to successfully advocate for my mother.... you might want to see if there is a similar program available to you--it's tough stuff your dealing with. We love you and are here to support you in any way we can. Michelle
  2. I would recommend seeking out a board certified pain management physician given the dose and duration of the MS Contin, where they can evaluate an alternate treatment plan- the body’s pain receptors have to be literally re-wired. This is very doable with the right pain management team.
  3. Hi Yvette, That’s pretty much how we all feel when this news hits. You’ve found the right group of people, committed survivors and caregivers avail to support each other. Today diagnosis is not prognosis, with treatment options expanding every year. There are many long term survivors here. Let us know how we can help-anytime. Michelle
  4. I’m glad the GO2Foundation was able to locate another potential trial for you. It’s impossible for medical oncologists to keep up with all the trials- which is good news fir us.
  5. Hi Stephanie, I’m sorry to learn of your Mom’s diagnosis. Lexie is correct & Keytruda should not be administered until the comprehensive biomarker testing comes in. While it is unlikely there will be a targeted mutation the treatment options have expanded significantly. When the testing does come in with Stage IV diagnosis, it is important to obtain a second opinion with a thoracic oncologist to evaluate if there are clinical trials which could be more effective than the standard of care. There have been more scientific advances in the last three years than in the last fifty so it’s almost impossible for a general medical oncologist to stay abreast of the best treatment options. Keep us posted. Michelle
  6. Hi John One of the members in my support group had whole brain radiation six years ago (almost seven). He regrets not having obtained a second opinion before doing so as there was a treatment option available that passed the blood brain barrier. The radiation was indeed successful, he does have significant memory impairment. I’m not sure where you’re treated or what type of lung cancer you’ve been diagnosed with, however you’re correct in that it is a big decision. I would also consider obtaining a second and third opinion too. I see you’re in NY so you are within driving distance for some of the big guns in the City & even up to Boston. You may also want to contact the Go2Foundation & Lungevity help line to obtain physician recommendations. Let us know how we can help. Michelle
  7. Yes, that’s correct, we waived the Medicare Part B & D however Medicare had rules about this in terms of the size of the employer. It’s a good idea to check with Social Security or obtain a free consult from a disability attorney before making a final decision.
  8. Yes. Medicare co-pays for targeted therapy is absolutely bananas, more than most people pay for housing. Medicare has rules about pharma co-pay assistance which frankly seems so unfair. The best course of action is to speak to the social worker about how to obtain financial assistance. Most of my support group members were able to receive such support. If you are comfortable, pick up the phone and call your congressional representatives and demand action on the Cancer Drug Parity Bill which has been stalled. Tell them how much your co-pay will be. Targeted therapy should be reimbursed the same as chemotherapy and immunotherapy but since it’s a pill- the coverage is through Medicare Part D (when it should be Part B ). The Medicare rules around this are so ridiculous. My husband took a part time job at UPS for Teamsters Coverage just to take care of my Alectinib co-pays. We didn’t qualify for any of the financial assistance programs. It’s maddening.
  9. Yes. All of this thus far is in line with the standard of care. It doesn’t necessarily indicate a stage IV diagnosis. Today Stage 3 lung cancers are treated more aggressively with better outcomes. Remember that diagnosis is not prognosis. Given the high rates of recurrence, once the lymph nodes are affected, systemic therapy is the best course. The B12 & Folic acid are administered in advance of chemotherapy as it can deplete the B vitamins. It takes about a week for the vitamin B levels to be raised for chemo. Waiting for the biomarker tests to return is also correct in that the physician is trying to establish the most effective first line of therapy. It’s not a bad idea to continue the folic acid if targeted Or immunotherapy is administered, but be sure to have B vitamin levels checked regularly once or twice a year (typically this isn’t routinely done). If the levels are too low, fatigue is an issue but if the levels are too high, there can be serious side effects like neuropathy. Sounds like it’s all going to plan. What you may consider a second opinion if there is a targeted mutation with a doctor that has expertise. For now, one step at a time.
  10. Hello Karen Michelle here. Like some of the others, I’ve invested quite a large sum of money in integrative medicine. The diet recommended to me was Andrew Weill MD’s anti inflammatory diet. This includes fruits, vegetables, whole grains, fish, and a few others. Juicing is not recommended as there is too much fiber lost from the whole food to support a diverse microbiome. There’s increasing evidence that a healthy microbiome does help to improve lung cancer outcomes. I diffuse organic essential oils for one hour at bed time- a combo of lavender Frankincense & orange. I’ve been doing weekly acupuncture to address the side effects of my targeted therapy as well. I try and walk every day, and have taken up Qi Gong/Tai Chi to help improve my lung functioning. It’s been almost three years for me now and so far I’m blessed to be doing well.
  11. Hi Jen, We are in Estes Park on vacation now, not too far away from you. I’m from NJ & live in the KCMetro. Like you I had a persistent cough & had an unremarkable physical. After an entire summer of a worsening cough, pneumonia, & a hospitalization, I was diagnosed with Stage IV NSCLC with a poor prognosis- six months to live at the age of 51. That was in September, 2018. Biomarker testing revealed an ALK mutation. I did get a second opinion at KU & have been there ever since. My next line of treatment will be managed by Dr Camidge. You were very, very smart to obtain multiple opinions. Feeling like you are flying blind is a good way to put it. Getting through the initial shock takes time, but once treatment begins there will be a greater sense of control. Ask us anything- we’re here for you. Michelle
  12. Hello from me too. I was diagnosed in 2018, Stage IV with the ALK mutation, now NED on targeted therapy. I don’t talk too much about my diagnosis with my friends or family anymore either, I don’t look or act sick however having lung cancer is like having a small flame burning. I have a phone buddy that Lungevity matches for me where we have the really frank conversations especially around scan times. There is also a Durva Club under the immunotherapy topics where there are a number of people who crossed the Durva finish line. Welcome!
  13. Hey Babs Good to hear from you! These are always very difficult choices. While I haven’t been on that therapy combo, I do understand it is high test chemo. I would certainly explore all the clinical trial options first by contacting both the Go2 Foundation & Lungevity Help Lines. I would also be asking your team if you do move forward with the chemo combo, what would be the next line of therapy and would you be disqualified from participating in future clinical trials. Keep us posted!
  14. Just wanted to say how sorry I am to hear about your MNL. One of my physicians is based out of the University Of Iowa in Iowa City. She’s a board certified Integrative Medicine physician, Nicole Nisly MD. She’s out of the internal medicine program. Her role is to help patients optimize their lung cancer treatment plan. She’s a published international expert plus she’s super nice too. Insurance covers the visit which is another plus. She had access to a lot of local resources to help support general health & had a list of discounted services. Even though she was five hours away from us Dr Nisly is an excellent resource.
  15. Hello from another Jersey gal. I grew up in Essex County, live in the KC metro now. I was 51 at the time of my diagnosis in 2018. My biggest concern was how to communicate this to my parents. They know I had been hospitalized with pneumonia however I didn’t tell them about the biopsy. When the results came in 48 hours later we were is such a state of shock. We told some close friends right away to get some “practice” in answering questions. I decided to let me parents know very early on. I made sure they were both going to be home with no major commitments for the day. For me, it worked out for the best to let people know what was happening because we needed all the assistance we could get. From my experience, given the complexity of this disease, I’m an advocate for sharing this news sooner rather than later. Welcome to the family. Michelle
  16. Oh yeah, this is such a new concept that even the physical therapists don’t really know about it. My “pandemic present” from my doctor is a course of prehab to help regain lost strength & flexibility as a result of being at home for over a year. My last scans looked good so doc wrote the order only to have the PT team say I was rejected from their program because of my lung cancer! I had a total fit & sicked my doctor on them. Now first appointment is June 1st. Will let you know how it goes!
  17. Hi, Glad to hear that the treatment plan is moving along as expected. My friend, who had the same treatment plan as you, did indeed loose all of her hair after the second round of Cisplatin. She eventually took her husband's clippers and bravely buzz cut the rest of her hair off. Her hair grew back, but this time with curls. So I suppose the upside of this is that if that happens you will never need another perm (which I hear is starting to make a comeback..... this younger generation is all abut viva la 80s....). Most employer sponsored insurance plans will cover a wig if you want one. Also the clinic social worker and help you find a low cost option as well. One of my friends just received a wig from a local non profit for free, she's delighted with it as it makes her look about ten years younger. We are ALL rooting for you as you get started....
  18. That’s the same plan my peer mentor had- chemo/rad followed by targeted therapy. She’s been in remission now for three years. The emotional roller coaster will even out over time. Let us know how we can help you get through starting treatment. We’re here for you.
  19. 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!
  20. Well that is really great news! The targeted therapy for ROS1 is very effective, there are survivors who have been in treatment for years now. You may want to check out the ROS1ders on Facebook where there will be a lot of great information to help you prepare for the appointment at Sloan.
  21. Now that is a great question. My targeted therapy for AlK causes edema & it took months to find the right dose & frequency. Lasix isn’t one size fits all & requires adjustments based on how much sodium is consumed the previous day. Lasix can treat edema but for me it was a trial & error approach. My dose was up to 40mg & we settled on 20mg four times a week. Basically my edema “test” is how well do my rings fit. If I can’t get them on or they are tight, then I take a lasix. In addition to Lasix if you can tolerate it, compression socks might help. I try & walk at least one mile a day which seems to work the best. Typically I walk about 2.5 miles a day which seems to move the fluids pretty well. It is a frustrating process for sure. Michelle
  22. Hi Jack- I also forgot a few other constipation tips- plenty of water (at least 64 Oz) & morning coffee- all helps. As for the B6 & B12, I take a prescribed Folic Acid supplement & B-50 in addition to the Salmon & veggies you mentioned. Essentially I’ve been following the Weill Anti Inflammatory Diet for a couple of years now. You will need to have your PCP draw a baseline B vitamin panel & an iron absorption panel to determine what your levels are before taking any B supplements. The downside to B vitamins is that if you have too much it can cause neuropathy. I have my B levels drawn once a year now. When I was first diagnosed I took a B-100 & as my nutrition improved, it was reduced to B-50. For the most part following the anti inflammatory diet has been pretty easy but requires a lot of prep work because nothing comes out of a box with instructions.
  23. Hey Jack- Personally I’m not a fan of these drinks anymore. When I was rowing I was a frequent user of protein shakes from Costco. Today I won’t eat any processed foods, particularly anything with more than five ingredients. Constipation is something I always have to battle too. I’ve resorted to making easy smoothies in the Magic Bullet- pumpkin, pear, walnut with cinnamon & nutmeg, blueberries, avocado & spinach with cinnamon or baked sweet potatoes works really well. I try to eat an apple a day with some almonds. It’s the perfect blend of a sugar, fat & fiber- great for constipation & a solid energy boost. I think sugar is the enemy of all cancer patients & I try to avoid as much as possible. I know this isn’t the easiest solution but it’s worked for me. The magic bullet does a great job & is super quick. Michelle
  24. I’m so sorry. Cancer is evil & takes too many. Prayers for you to be comforted during this time.
  25. Good Morning, The second opinion may take more than one appointment depending on the results of the biomarker tests. It is really the keystone for determining the most effective treatment plan. In a sense, you already may have one biomarker per se-with PDL being 100% it's the perfect target for immunotherapy post chemo/radiation. PDL is part of the immune system, however and this is where it gets tricky, it is possible to have 100% PDL and have another biomarker such as ALK or EGFR. If another biomarker is discovered in the results (also called the panel), then immunotherapy isn't effective. Research will ultimately help us understand why. If you were writing this post five to ten years ago, the treatment options would have been limited. Now, there have been more scientific advances in the last three years than in the last fifty. If you're into YouTube, that can be a little bit of the Wild West with conflicting information. The Go2Foundation has an excellent series called "The Lung Cancer Living Room". Those are very reliable talks from the nation's leading physician researchers. Keep us posted! Michelle
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