Jump to content

Rower Michelle

Members
  • Posts

    1,763
  • Joined

  • Last visited

  • Days Won

    147

Rower Michelle last won the day on July 21

Rower Michelle had the most liked content!

6 Followers

Profile Information

  • City
    Overland Park
  • US State (if applicable)
    KANSAS
  • Country
    Unite
  • Gender
    Female
  • Status
    Lung cancer patient/survivor
  • Interests
    I am a rower! ALK Positive Research

Recent Profile Visitors

The recent visitors block is disabled and is not being shown to other users.

Rower Michelle's Achievements

  1. Just got that visual Judy, as a kid taking the bus through the tunnel I can still remember all the grime on the tiles & that horrible smell! It was gross…
  2. There ya go-that’s the spirit! The imaging center was over on Northfield Ave. It’s a matter of a little research & phone work to ask for the low cost options. Keep us posted. Here is the search link for low cost self pay CT scans: https://radiologyassist.com/locations/
  3. Hooray for you guys! That’s awesome news! Fatigue seems to come with the Keytruda territory. A number of members in my group have had palliative care appointments where Ritalin has been prescribed to improve energy levels with good results. Maybe worth considering? Doing a happy dance 💃 for his good news!
  4. Thanks Judy- I’ve always wondered about that too. Growing up literally on top of the Garden State Parkway as well as living in Dallas & Miami spending hours in rush hour traffic….
  5. My family lives in NJ. When I was diagnosed with lung cancer I suggested my sister get screened. There of course was “no criteria” for a CT scan with a LC family history. I did some research which revealed this was a very common barrier. Many imaging places now have low cost self pay options for low dose CT scans. Fees were about $99 in West Orange up in NNJ. Like Judy, I was misdiagnosed for months so being assertive is the way to go.
  6. Hi Rick, Many of my friends in targeted therapy who had radiation do have scans very similar to yours. What the radiologists do not have a great deal of experience in is ironically interpreting these results. Both targeted therapy and radiation can produce scar tissue. The PET is the easiest way forward if your insurance pays for it. The data is on your side, the Tagrisso is most likely still effective. Over time scar tissue will become better differentiated on the scans. So hold onto your hope, we’re still in uncharted territory with these new therapies. Doctors need more time and experience. Hang in there. Michelle
  7. Rower Michelle

    CBC results

    Hi Tom, One of the things we can all expect is unexplained wonky blood results. I’m almost three years into this & can count the number of normal results I’ve had on my two hands. It’s hard to believe a year has gone by, what you might want to ask about in terms of surveillance blood work is having tumor markers drawn regularly. While it’s an imperfect science right now it could bring you some peace of mind. Experts like Ross Camidge MD are now using these blood tests. It’s worth a discussion. Michelle
  8. Worst part for me was a really sore arm & crippling fatigue for three days. Couldn’t get off my couch- Some of that probably had to do with targeted therapy too. Good luck!
  9. 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
  10. 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.
  11. 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
  12. 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.
  13. 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
  14. 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
×
×
  • Create New...