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  1. Like
    ColleenRae reacted to Rower Michelle in Pet Scan results-Not what I hoped for   
    Alright Claudia!  That’s a fantastic option which puts you officially in the trail blazing leading edge of treatment.  I love your oncologist!  Remember even if this guy has reservations, a second surgical opinion is always an option. 
    PS You made me smile- as you know my parents are still in Jersey, my Dad who is the least handy husband on the planet (no joke) always says... I gawtta guy..... maybe this is a good omen! 
  2. Like
    ColleenRae reacted to Claudia in Pet Scan results-Not what I hoped for   
    Hi all, I went to my God this morning and Rower Michelle you were right. He wants me to see a thoracic surgeon. The cancer in my hip has been gone for over a year and he feels that I might be a candidate for laparoscopic surgery as my lung tumor is only 2 cm. He's got a guy that is the only guy he wants me to see about this. If the surgeon says no then it's either "light and short chemo" (there goes my hair) or a total change of treatment drugs which he does not seem to want to do. He feels that the Keytruda has been very effective in keeping the cancer away from the rest of my body. I would be thrilled to have the surgery as it would get it the hell out of my body. My God onc is making the arrangement for the visit so I don't yet know when it will be. I'll let you know what happens. Please keep me in your thoughts. Peace, light and great scans to all, Claudia 
  3. Like
    ColleenRae reacted to LexieCat in Pet Scan results-Not what I hoped for   
    Actually, before this latest cancer was diagnosed, I had made a decision to let my gray grow out. I'd been wanting to do that for a while, but because my job involved traveling and presenting trainings, I had to avoid the awkwardness of growing it out (I was NOT gonna pay exorbitant salon fees to gradually color my way through going gray). When the pandemic hit, I decided it was the perfect time to do it, so I haven't colored my hair since early March. Here's a pic from a couple of weeks ago: 

    Those are my kiddos--son has gone back home to Colorado but my daughter's staying here till the end of the year, at least. 
  4. Like
    ColleenRae reacted to LexieCat in Pet Scan results-Not what I hoped for   
    Hey, Claudia,
    Sorry to hear about the disappointing scan. Does your god have a preferred sacrificial rite? I may be losing my hair soon and my daughter who's come to stay with me during treatment is drooling at the prospect of giving me a mohawk and green hair or something as a prelude. So I might be able to offer up some hair for a good cause, lol.
    Hang in there--hopefully your deity has a plan B that will get you back on track.
  5. Like
    ColleenRae reacted to Rower Michelle in Pet Scan results-Not what I hoped for   
    Crap Claudia,  not the news anyone wants to hear.  You've been feeling pretty good too right?  Sucks.  I'm wondering if they plan to do another biopsy to asses how to match up your chemo options?   You know, I'm not so sure about surgery being out of the question anymore.   I've seen a few (granted handful) of people with Stage IV get surgery if there are no other organs or bones involved.  Doesn't hurt to throw it out there as a possibility (even if it's a long shot).   
    Looks like my Mom is going to be headed for another round of chemo and she's not all too happy about it since she just spent a fortune on a perm (It's a Jersey thing, even the old ladies have big hair).      
    Maybe they can come up with an immuno cocktail for you (and keep your hair).   Fortunately there's lots of options out there, including getting a second opinion if you need one.   
    Hang in there my friend, 
  6. Like
    ColleenRae reacted to Claudia in Pet Scan results-Not what I hoped for   
    Hi Fellow Warriors, I got the results of my pet scan after chemo, immuno and SBRT radiation treatments and I was hoping for NED. Well, I didn't get that. My Tumor went from 1.3 x 1.6 x 1.0 cm with SUV of 5.6 (last scan) to this scan showing  2.0 x 2.4 x 1.5 cm with SUV max of 9.9. The good news is there was no evidence of metabolically active metastasis. I an Onc appt Thursday to talk. I'm wondering what we are going to talk about. I'm stage IV so surgery is out. I hope I don't have to go through chemo again. I feel that i am just getting my life back somewhat (covid stops most things) and I know it sounds stupid but the thought of losing my hair again makes me sick to my stomach. I guess if that's gonna happen that's what is gonna happen. I am currently on Keytruda and have been since I started with chemo back in March 2019. I'm nervous but I need to kick this things *ss. Thanks for listening. Peace, light and great scans for all, Claudia
  7. Like
    ColleenRae reacted to Rower Michelle in Starting chemo/immunotherapy today!   
    Administrative BS aside, it sounds like it went off very well.  Don't be surprised when the wall of fatigue hits (its a different day for everyone), just ride it out and your energy will bounce back.   
    Looks like you're having a great time with the kids too!  
  8. Haha
    ColleenRae reacted to LexieCat in Starting chemo/immunotherapy today!   
    I think you mean "roid rage" as in "steroid rage," unless you meant HEMOR "rhoid rage," which I could see being a "thing," lol. They've always enraged ME, anyway. 
  9. Like
    ColleenRae reacted to LexieCat in Starting chemo/immunotherapy today!   
    It was actually, overall, not a bad morning, though there was an administrative glitch that hung me up for almost an hour. My oncologist had submitted the approval for the infusion meds but the insurance company had already approved the meds for MD Anderson, who had neglected to cancel the request. So it took a couple of hours or more to get through to someone there to cancel their submission so Penn's could be approved. I was antsy waiting, but had a comfortable spot to wait, so it was just mildly annoying.
    EVERYONE I dealt with at Penn this morning was terrific. I had to report first for a chest Xray to ensure proper port placement. Then I had to go get labs drawn and while I was waiting I was approached by a researcher who wanted to ask about participating in a liquid biopsy study. All that's involved is taking another 5 tubes or so of blood each time I have blood draws so they can follow my course of treatment and see whether biomarkers can be identified. Apparently it doesn't affect my treatment--it's just for research purposes. I told her, I'm all for science, so yes, I'll participate. Lab draws were quick/easy once my port accessed (LOVE my port!).
    Then I went to see my oncologist--he and my daughter got to meet. It was my first time seeing him in person--the first visit was a virtual consult. He told me the scans I had Friday showed SLIGHT growth of the primary tumor since 6 weeks ago, but not a lot. He said there are still two small nodules in my left lung (lower lobe--I had the UL lobectomy 3 years ago) that they will continue to watch but right now they didn't appear to be involved. He had the results back from the liquid biopsy and said there did not appear to be any currently actionable mutations, but he said he felt better going forward that we weren't missing something, and more confident that the immunotherapy would be effective. 
    Once I got back to the infusion area (and everything is nice and conveniently close, though my daughter and I both got momentarily lost in this very nice but HUGE facility), I had to wait almost an hour for the aforesaid admin glitch to be resolved. A pharmacist and a couple of assistants came back to educate us about the drugs and the dos and don'ts. The actual infusion itself took about an hour and a half--30 mins for Keytruda, 10 mins for the Alimta, and 30 mins for the carbo. Then one more visit to flush the port and get me disconnected and I was done. The infusion room was private, which I wasn't expecting but was pleasantly surprised to find. There's a TV, Wifi, recliner, chair for guest, and a nice big window with a view of Phila. There's a Starbucks and a couple of takeout places downstairs and a kitchenette where I can get something microwaved. I sent my daughter out for Starbucks for breakfast. 
    All in all, as I said, pretty good morning. Next appointment is Oct. 9. 
  10. Haha
    ColleenRae reacted to BridgetO in Starting chemo/immunotherapy today!   
    Look out cancer cells, here comes Teri with the drugs!
  11. Like
    ColleenRae reacted to LexieCat in Starting chemo/immunotherapy today!   
    Chest x-ray to confirm port placement, visit with doc, lab work, and then the infusion. Carbo/Alimta/Keytruda. 
    My daughter's coming with me for this first one--got the OK for her to accompany me. I just wanted her to meet doc and hear about what to look out for, etc.
    Shoulder still painful--had a bit of trouble sleeping last night but finally got almost 3 hours uninterrupted before I had to get up. 
  12. Like
    ColleenRae reacted to Judy M2 in First update   
    Shirley, I had 30 radiation sessions, 6 chemo infusions (carboplatin and taxol) and am now on Tagrisso. I have an EGFR mutation. I'm doing well and my scans are improving. 
    My voice also varies and it's still an effort to talk. My ENT said I'd have to repeat the procedure after 12-18 months. Immediately after the procedure my voice was gravely but after a while it softened up. Besides any anesthesia side effects, David can expect to have a sore throat for a few days. There is no limitation on using his voice afterwards. 
    When I wear a mask, people have a hard time hearing me. I bought a small, wearable voice amplifier that works pretty well. The brand is WinBridge. I think we found it on Amazon.
    Good luck at the ENT. 
  13. Like
    ColleenRae got a reaction from Tom Galli in Precision radiation for lung nodules   
    Thank you for sharing this, Rose. I am sorry you are experiencing this side effect.  Both my surgeon and a second radiation oncologist I consulted with advised that SBRT will definitely change the appearance of future CT's (due to scar tissue from radiation) and that readings will need to be done by someone qualified and with the necessary skill to distinguish between a "mass" / concerning nodule and scar tissue. I was also advised that, yes, a side effect of radiation can impact the quality of one's breathing capacity (which is one reason why we're delaying radiation tx for a small slow-growing nodule; I've already lost some lung capacity from a RUL lobectomy). Both doctors said radiation can lead to chronic radiation pneumonitis.
    Was the COPD diagnosed AFTER the radiation? Did you have any shortness of breath or cough prior to radiation? I'm not sure if COPD is related to the radiation tx's. Maybe the radiation tx's aggravated the COPD? My first thought would be the unfortunate side effect of radiation pneumonitis. Hopefully someone else can share regarding their experience with this. There is another category here on the site regarding radiation... Have you posted anything there?
    Hang in there... I'm really sorry to hear this and hope that you will find the right treatment to reduce if not eliminate the breathing issues you are having. I do hope it improves for you. Please keep us posted. 
  14. Like
    ColleenRae got a reaction from LexieCat in As if this week weren't complicated enough...   
    I'm trying to catch up on all of your posts... My goodness; you certainly have had A LOT happening since I was last able to check in!  After all of the appointments and accident (ouch!!!) it is good to know that things are lining up - and you really do sound like you are in the best hands possible. I am so glad you have - and feel you have - the best medical support possible. Kudos to your daughter as well for being there to help you
    I am sorry I don't / can't keep up as much as I'd like to on this forum...(dealing with a lot of stressful issues w/ my son right now...) I really do care about what you are experiencing. You have learned so much and share that with all of us. Really hope all goes well on Tuesday. You ARE a fighter.  Your posts illuminate that. Will be thinking of you and I look forward to reading of your progress (and success!).
  15. Like
    ColleenRae reacted to Susan Cornett in Deciding on Treatment   
    Hi Steve - 
    Welcome to our forums. First, as others have mentioned, stats are just that: stats. They don't take your health or current treatment options into consideration. On top of that, no doctor can tell you how long you have. When I was first diagnosed, I panicked when I was told my 5 year survival odds were 18%. Once I read more about stats, Super Doc and I came to the agreement that stats are crap and I don't want to hear them.
    I'm a stage IV survivor. I've had surgery, chemo (two different cycles), and radiation. I also had lymph node involvement which was tackled with radiation. I had some issues with the radiation but most of them resolved when the radiation ended. As for chemo, I've had cisplatin, alimta, carboplatin, and taxol. They each caused their own short-term and long-term effects but I had a great medical team that worked with me.
    There's a lot to take in - information, decisions, etc. We're here for you.
  16. Like
    ColleenRae reacted to Tom Galli in Deciding on Treatment   
    I was diagnosed Stage IIIB, non small cell lung cancer, squamous cell. We share a type and my treatment outcome resulted in nearly 16 years of extended life.
    Lexie's view on survival statistics parallels mine; Donna G.'s treatment experience and outcome always fills me with hope. The question to be decided is palliative care proceeding or concurrent with hospice care with a life duration of say 6 to 12 months, or a significant life extension beyond that period. Only you can answer that question.
    My nearly 16 years of extended life allowed me to experience my daughter's wedding, the birth of my granddaughter and numerous vacations to exotic places around the world. True, there was a bill to be paid for this extension. Here is my bill as an example of worst case problems. Your suggested first line treatments of chemo/radiation should not be anywhere as arduous as my treatment outcomes.
    What is first line chemo/radiation like? This summarizes my experience with infused chemotherapy. In first line chemo/radiation treatment, radiation is the key component and chemo is more-than-likely given at a reduced strength. I didn't even lose my hair in first line treatment. My six weeks of conventional radiation was a piece of cake for the first 3 weeks. Then, each day's treatment sapped my energy making it hard to find the strength to walk from my car to the clinic. Also I experience a sunburn-like symptom on my chest and a dry, non productive cough. But these symptoms quickly resolved on completion of treatment. Most important, my first line treatment worked!
    Much more important, immunotherapy is now a possible and very effective treatment given in combination with conventional chemotherapy or as a sole treatment. This type of therapy presumes your biopsy tissue sample is sent to a lab for determination of PD-1 or PD-L1 expression which makes possible the new and very effective immunotherapy either concurrent with or following first line treatment. Read about immunotherapy here. Ask you doctor if your biopsy sample was sent for laboratory analysis to determine immunotherapy suitability.
    I wrote a book if you are interested in all the details of my extensive cancer treatments. The link and a short summary of my treatment experience is in the footnote to this post.
    Stay the course.
  17. Like
    ColleenRae reacted to SteveD in Deciding on Treatment   
    After spending a week in the hospital with pneumonia in June, I was diagnosed in August with stage 3 lung cancer. I'm pushing 70 and I hear chemo and radition are quite brutal, with both short-term and long-term side effects. Aside from an occasional pang and pressure in the upperleft lung, I feel healthy, and that is one reason why I'm having trouble deciding whether to go ahead with treatment. The radiadion doctor says I have about a one in three chance, the chemo doctor says around 50% if I go through treatment now, and probably a zero chance in three months. Anyone who cares to share their experience with chemo and radiation, as mine will take seven weeks, would be greatly appreciated. I know a small chance of surviving is better than none, but with me it is a quality of life concern. Thank-you.
  18. Like
    ColleenRae reacted to Donna G in Deciding on Treatment   
    Hello Steve.  I was born and raise in Boston where I trained to be an RN .  I was 50 when  I was diagnosed Stage 3 B .   That was in 1997
    I started treatment with  2 chemo drugs and daily radiation.  It did shrink and I was able to have surgery followed more chemo.
    Yes it was rough.  But I am glad I did it.  I have survived.   Please keep us posted on how you are doing.  By the way I just
    had my 73 Birthday.  
    Donna G
  19. Like
    ColleenRae reacted to BridgetO in As if this week weren't complicated enough...   
    Wow, what a strange accident! It was good that your daughter was there! i hope your recovery is fast and that this doesn't interfere with your port placement.  I didn't know that Apple watches had a fall detection feature. I'll have to check that out. I do worry about falls, especially since my wife is often out of town on business (but she's been home since the pandemic started.). Last year while she was gone, I was sick (pretty sure it was norovirus), got dehydrated and weak, fell getting out of bed and clonked my head on the nightstand. Not as hard as is sounds like you hit yours, thank goodness. No injury, but it scared the snot out of me! 
    Let us know how you're doing!  I'll be thinking of you.
    Bridget O
  20. Like
    ColleenRae reacted to LexieCat in As if this week weren't complicated enough...   
    Port placed today--I'm sore, but they put it on the same side that's already sore, so at least I have one good side (though left wrist still stiff/sore, too). Surgeon said it would be usable tomorrow, if needed. But my first infusion has now been scheduled for Tues. I'll see the oncologist first, and this Friday go for a CT scan.
    My surgeon told me to let him know how I'm doing as treatment moves forward, "You have my cell number." I said yeah, but I hate to bother you with a phone call. He said, then send me a text--I really want to hear how you're doing.
    See why I love him? 
  21. Like
    ColleenRae reacted to Lisa Haines in Second opinion visit with Dr. Bauml   
    PS:   My first line of treatment (back in early 2015) was Carbo and Alimta and within a few months I was on Alimta maintenance and NED.   Hoping it works very well for you.  I never found it to be a terribly difficult chemo treament.  I felt fine until about day 4 and then would be really wiped out for about 48 hours and then bounce back.  That was also the day they stopped the Dex (Steroids) and I'm sure that's typical.    I was really pretty fatigued and had some nausea, but nothing terrible.  I could control it well with Zofran.   I also kept very well hydrated and that helped a great deal, the one time I did get dehydrated I ended up going in for IV fluids and IV Zofran, as not having enough fluids made me feel much more nausea.    Back then, we did not have Keytruda or any of the Immunotherapy drugs (they were FDA approved later that year).   I did eventually  move on to Immunotherapy (Opdivo) as my second line treatment and it worked amazingly well and is why I'm here and "Stable" today!   
    Hope it goes very well, and hope to see you at the next Zoom too. 
  22. Like
    ColleenRae reacted to LexieCat in Second opinion visit with Dr. Bauml   
    Actually, it's not clear the liquid biopsy WILL be "covered"--the Nurse Navigator told me my insurance company (BC&BS) was notorious for denying coverage for it. She said I should expect to receive a denial and bills, but not to worry--Penn has an agreement with Guardant, the testing company, to make sure I will not ultimately be responsible for the bill.
    First infusion scheduled for Tuesday! I'm ready to rock this thing. I just wish I didn't still have so much shoulder pain from the fall.
  23. Like
    ColleenRae reacted to LouT in Second opinion visit with Dr. Bauml   
    I often just lurk on chemo posts because I have no valid experience, but it is great that you went for that second opinion.  That's a lesson to folks like me, should the need ever arise.  Thanks for sharing all this.
  24. Like
    ColleenRae reacted to LexieCat in Second opinion visit with Dr. Bauml   
    He really IS awesome. The whole visit (which was by video) was over an hour (I tried to record it and the dang recording didn't work). 
    His take--he thinks the next-gen sequencing and liquid biopsy were worth doing and he said he'd order them. On the treatment side, though, he thought he would recommend exactly the same as what the MD Anderson oncologist recommended--carboplatin, Alimta, & Keytruda--four cycles and then continue the Alimta/Keytruda indefinitely, followed by radiation. One difference--he would scan after two cycles to assess response, rather than waiting for three. And he agreed with the other guy that the only protocol that could be considered "curative" would be the chemo/immunotherapy with concurrent radiation, but he too felt that due to the location of the tumor and lymph nodes in my chest (which are on both sides of the esophagus), that approach would be too toxic for me.
    Despite the agreement regarding approach, I'm inclined to go ahead and switch to Penn. I'd rather be working with him, for one thing, and I feel like Penn would be in the best position to locate any clinical trials or deal with any major complications that might come up. I'll make my decision after my consult with Dr. Wilson (RO #2, also with Penn) tomorrow.
    Dr. Bauml said he'd be fine with whatever I decide, and even if I were to stay with MD Anderson he'd be happy to continue to be a resource for consult as needed. I just feel like the communication with him was much more comfortable, all in all. I felt more "heard" and I felt like his answers were more responsive to what I was getting at. 
    So for right now, I have a blood draw for the liquid biopsy (which will be at the same location as my appointment tomorrow with Dr. Wilson) and he's ordering the tissue samples for the next-generation sequencing testing. He wants a new CT scan just to get a baseline, since it's been 5 weeks since my PET-CT. He told me to go ahead and have my port placed next week, as planned, and that I could start my infusion the same day (as previously planned) if I want to switch to Penn. I'll have to go into Philadelphia for the infusions, but it's only about 10 minutes further in terms of driving time.  I believe the radiation could be done in NJ--I'll find that out tomorrow. 
    Glad I went--if nothing else, at least I feel more confident we are on the right track. 
  25. Like
    ColleenRae reacted to Pattymac in Precision radiation for lung nodules   
    Colleen, I’m doing baby steps compared to what Tom has been through, but SBRT seems like such an easier answer in getting rid of nodules that have turned into cancer! My father died at 46 years old from lung cancer 51 years ago, and I think of him during my treatment as he also had radiation back then. I thank god for the progress they have made in recent years to deal with all kinds of lung cancer! I feel blessed and will post after my next appt tomorrow! Take care
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