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Everything posted by Moonbeam

  1. So glad all went well, MarieE. My husband had a pneumonectomy and I was amazed he was up and walking shortly after his surgery. Home is definitely the best place. Sending so much love and well wishes to you and your husband. we are all here for you! XX
  2. Lisa A - my husband received 5 treatments to L5 in his spine plus had kyphoplasty at the end of July and first few days of august. All was going well and he stopped all pain meds first week of September. UNTIL this past Monday. The pain in the same spot is back...and goes into his hip. The radiation helped and all is stable. There are no new metastatic lesions and everything is stable. Except the pain. They have done 2 MRI's of the spine in the last 2.5 weeks and no reason for this amount of pain...He was admitted on Tuesday am and he is now taking gabapentin, dilaudid, and xanax. They think his anxiety may have something to do with all the pain. 🤦‍♀️ I know the burn from the radiation cropped up on Sept. 12th and I feel since then, little by little, uncomfortableness developed but by last week and weekend, he was back on the floor. Never did I think we would be here again. All of his doctors know about this and seems the only answer is pain meds (he's so bummed about that) and xanax for anxiety. Who doesn't have anxiety and especially a cancer patient! Maybe there are others who know or can shed light on this. XX Moonbeam
  3. Love it, Michelle!!! And Tom, you got this. Prayers for another clear scan!!! Xx
  4. My husband started chemo/Keytruda almost 2 weeks ago for recurrence. He’s had for the past 4 days a stomach ache. His symptoms are: -Pain to the touch below the belly button and to the sides. -Intestinal gas style pain. -Dull burn sensation. -Occasional gas produces minimal but noticeable relief is this normal? I’m going to call tomorrow but thought I would reach out an ask. Any and all advice is great.
  5. Appts start this am. And MRI of spine is this afternoon. He’s nervous and feeling defeated, scared the last day and a half. He wants it all to work. I believe the tumor in spine has shrunk. He can sit and walk and pain is about a 3/4 compared to 7-10! Lung we won’t know if chemo/immunotherapy is working for quite some time, I imagine. Today’s appts are all pain management prescriptions and MRI, as I said. Tomorrow, we will meet with his neurosurgeon to go over results of MRI. 🙏🏻 I’ll keep everyone posted xx
  6. Thank you all. Today has been much better. Bone pain has lessened- nausea on and off but better than yesterday. We leave again, Tuesday, for a few appts and an MRI of spine to see how Kyphoplasty was and radiation. We will also go thru all of his pills/pain management ones as well. He’s having a hard time emotionally and I sooo understand it. My heart breaks for him however, I’m all about moving forward one day at a time. Every day is a new day and I hope he responds to the new treatment. 🙏🏻
  7. Thank you everyone. Staying hydrated and making smoothies. BridgetO - good idea with the rice. It’s amazing how we forget the basics. 😩 This second time around going thru chemo is a bit different and I’m charting again. I just got worries with the joint paint as last time, he didn’t have as bad if at all. Onwards and upwards...hoping tomorrow he’ll feel a bit better!
  8. Good morning all. Well, after my husbands infusion Wed. 8/7, he was feeling ok. Very normal. This time around is a bit different and want to make sure all is ok. His new cocktail is: Carboplatin, Paclitaxel, and Keytruda. Now on day 3, He is having muscle aches and pain, stomach upset (almost burning), dizziness and he's lost about 5 pounds in a day. He's eating but it's difficult as we all know. Are these normal symptoms? He doesn't look jaundice and he doesn't have a fever. Is there anything I can give him other than all the meds he is on? He takes quite a few bc of his metastasis to L5, even though that is better after his radiation and kyphoplasty procedure. I just gave him his anti-nausea medicine and anxiety med, plus muscle relaxant etc. ugh, i hate this for him!!! Anyhow, any information or advice would be great at this point. XX
  9. Hi Michelle! Thank you for responding. My husband is familiar with the ringing in the ears bc he had that on the cisplatin. They now say “he has an allergy to it”...lol At this point, he will take ringing in the ears to get this under control 🙏🏻 . Let’s say he doesn’t respond, are the other alternatives if no genetic markers? hope you are well! Wish we lived closer xx
  10. Hello all...so my husband starts his new treatment for his recurrence. He will be on Carboplatin/Abraxane with Keytruda. praying he responds to treatment 🙏🏻 I charted his symptoms when he had his infusions when he was initially diagnosed after he had a pneumonectomy. He was on cisplatin/taxotere. Any one else on the above? What should we expect? Similar to the 1st course of treatment? Did everyone respond. BTW, he has no genetic markers...maybe that will have changed after these last biopsies? Thank you all for responding. XX
  11. wow Karen, completely agree with all you speak of. Laughter being one of the best medicines; Becoming your own and in my case, my husband's advocate. Every time, i learn something new every day. I also have been so on top of it, some on his team (surgery, oncology etc) have missed things, wrote things that were wrong, the list goes on. This new finding is troubling and not a lot of info out there that I can find. Any info you have on Pseudoaneurysm from descending thoracic aorta would be great. Thank you so much and again, Welcome to the forum!!! XX
  12. Karen - your strength is admirable and congratulations on 21 years!!! Welcome to the forum! Husband stage 2b lung cancer pneumonectomy left lung almost 5 months ago
  13. My husband did not really have insomnia but he did have hair loss...he was cisplatin and taxotere. His started to fall out right at the 3 week mark just before his 2nd round. His was also every 3 weeks. He had his final chemo on March 29th. His hair funnily enough, started to grow back in spots. so not he just has a little hair sticking up on his head. Looks adorable. Hope this helps and sending lots of love and prayers to your mom. XX
  14. Disappointed/dissatisfied tbh since the get go with the oncologist, the oncologists head nurse he was assigned to after his surgery. Don’t forget the first meeting with oncologist he wrote “margins were positive”. Incorrect/splitting hairs?. Pathology report said no because they removed the part of the tumor that grew out of the bronchus into the tissue. Bronchial margin and vascular margin were uninvolved by carcinoma however, the tissue margin extended to the outer surface of the main bronchus. But surgeon removed that. Since that time, first visit good. Second visit good. Third enter PA. and note on his portal from nurse stating I was “emotional” and tearful regarding genetic testing, immunotherapy and tinitis and saying I said they were not moving quickly enough regarding husband’s treatment ??? And PA’s nursing note that “husband is anxious regarding his treatment.” Ugh...you all can see how frustrated I am. I will definitely be writing a letter and speaking to an administrator as it’s just not right. Thank you Tom for the advice...have lots to think about moving forward that’s for sure. xx Moonbeam
  15. LexiCat / Tom Galli - thank you for responding. Interestingly, there are no notes from his visit yesterday in his portal. Never has that happened. 🤷‍♀️ His oncologist is nice. Hard to read and not sure how receptive he would be with what has transpired and tbh seems like the notes from that time are “covering their asses.” PA wrote Mr. so and so seems anxious about his treatment.” No incorrect. he got anxious and emotional bc of your comment.! Yesterday am the PA looked at my husband and said “I see today this is your last infusion. Do you want to do it?” And my husband replied “why wouldn’t I?” PA said “I like to give all my patients that option???” Just baffling - 🤦🏼‍♀️ i believe the cancer center needs to know what’s happened. It’s very confusing/troubling and hard to have confidence moving forward with continuing there...however, not sure what to do tbh. Tom, what would you do?
  16. Today was my husband’s last day of chemo. what a whirlwind it’s been since Nov. 14th but so happy he rang the 🔔. It’s been filled with lots of twists and turns, as I’m sure everyone’s has...the biggest was my last post with our meeting with a PA instead of his dctr and it being a shi_ show, as I like to call it. We are glad treatment is over and obvi, pray that in 3 weeks his CT scan is clear (and all others moving forward) however, it wasn’t easy coming back and seeing the PA again. To say his choice of words last time was poor...”lung cancer always comes back” it’s been hard to feel good about being switched to a PA in the middle of treatment without our consent. Add to that, not responding to important calls - ringing of ears, folliculitis to name a few - is frustrating. It’s too long to write all that transpired last visit but this one, as awesome as it is, has us both not feeling confident in my husband’s care, if that makes sense. His surgeon- fabulous. The nurses in the infusion part - fabulous. His oncologist seems great but has been MIA the last 2 treatments and the oncologists main nurse and the PA - no bueno. Just frustrating and awkward now. Anyhow, back in 3 weeks for CT scan and then every 3 mos afyer thay If all is good. He had a pneumonectomy (stage 2b) NOn small cell poorly differentiated squamous cell carcinoma . Thank you as always for all your help and great advice. He’s in the alchemist trial and waiting to see about immunotherapy drugs as well (also at next visit)
  17. Update: received call from his doctor. His last treatment in 3 weeks will just be the taxotere again. Discontinuing the cisplatin and also stated that carboplatin wouldn’t be used because it seems he believes there’s not proven a proven efficacy for his situation.? The only one with a proven efficacy is cisplatin , the doctor says “the others all the same” (there ability to help) therefore, the choice to take taxotere is a good choice. One more regimen and then proceed to the Alchemist trial and carefully monitor. He’s saying that’s the best possible care at this point. Seems like a wait and see...the tough to expect is the proven results with cisplatin. I guess where my confusion is why not lower the amount of cisplatin? we go at 4:30 for the Neulasta shot. Any thoughts or advice? XX
  18. Thank you LexieCat and Tom and PaulaC - I knew you all could calm me. All are correct it was or is the delivery of it all and the “couldn’t make or changed a few times their decision or choice how to move forward”. Yes it is adjuvant therapy - just want the best results. And I obviously, don’t want my husband to have total hearing loss. He broke down when the PA said lung cancer has the highest rate of reoccurrence (I know this and think he may or may not have) so that threw him for a loop. We go in at 1 for just the taxotere. I thank you all so much for talking me off the frustration ledge ;)....😘
  19. Now they’ve just come out and said “just the taxotere”. Haven’t even seen his dctr but he’s been in contact with the PA and nurse. I’m so frustrated and so confused about the change of plans...one minute you don’t need, the next “changed our mind to just the Taxotere”! So now waiting to see if there is a chair available for him since they cancelled his chair earlier.::I’m probably making no sense. Just confused and frustrated.
  20. Here ready for 3rd round of chemo and they are concerned about the ears ringing. My husband is on cisplatin and taxotere. Were thinking of changing him to carboplatin with taxotere then entered the room and said stop chemo!? He’s stage 2b non small cell (squamous) They are saying he’s gotten the most benefit from the first two rounds.? Is this correct???? He was supposed to have 4 rounds. He had a total left lung removal and was found in his lymph nodes. Did the chemo kill it all? Why the rash decision and not lower the cisplatin dose?
  21. Aw - Michelle. Thank you! How are you??? I get so caught up in our stuff, I forget to ask how you are? Praying all is going well. Such great support here. So very fortunate. Thank you for all of your advice. xx
  22. HI Michelle - Sorry it took so long to respond. My husband is doing well considering...lots of new side effects: folliculitis on his head, mouth sore inside bottom lip, ears still ringing and he says a bit plugged. We go back next Wednesday for round 3. Unfortunately, I haven't heard fromm his nurse or doctor. That's been the hardest for me tbh. 😡I also, had to go out of town for a few days and now home, and will be making another call. Thank you for the above information. Been doing the falling rains It helps but its ongoing, so gets frustrating for him during the day. Thank you for checking in and just now catching up on here....XX
  23. Michelle - thank you for your response. Hadn’t thought about the hairs inside falling out 🤔 I will definitely put our sound on from an app I have tonight when we go to sleep. thank you so much for the advice! Would love the biofeedback app KU recommended also. Thank you!!!
  24. Day 5 since second treatment...husband just made me aware that he’s having ringing in his ears. 😡 Hello...could you have told me sooner! I will call and let his oncologist know tomorrow and i believe I read somewhere it’s from the Cisplatin?. Should I/he be concerned? It’s a nuisance obviously but is it bad? This time around nausea has been worse. He’s managing but it’s not been easy. Here are my next questions and a discussion (with his oncologist and team)I need help with: I know some molecular pathology testing was done. He has no PD-L1 expression. BRAF result = negative, as well as, EGFR, also negative. His type of lung cancer is NSCC poorly differentiated squamous cell carcinoma. Stage 2B . What other test(s) should I be asking for? Can immunotherapy be done at the same time as chemo? Is he a candidate? I know he is being enrolled in an Alchemist trial - adjuvant lung cancer enrichment marker identification and sequencing trial) . Other than that, I’m researching and see a few things about immunotherapy but tbh, it’s a bit over my head. Last thing, what does it mean when the dctr writes: NSCC of the left upper and lower lung (obvi removed now) with “focal squamous and focal neuroendocrine differentiation”? (The quote part) Sorry for the length tonight. My mind has been racing a bit this week. Comes and goes, obvi. Thank you again for all the support!!! XX
  25. Hi Maria. I’m so sorry to hear of your mothers diagnosis. My husband was diagnosed with NSCLC squamous Nov 14th. His also in his left lung. Right smack dab in the middle of the left bronchus. He had a pneumonectomy on dec. 10 and started chemo Jan 25th, as a few lymph nodes were positive. Even though some were removed, chemo was a given since the lymph nodes were involved in his staging. He is 2bn1. He is 51 and just finished his second round of chemo on Friday. He has two more to go. He handled surgery really well. It’s obvi a major surgery (total left lung removal) and a hard recovery. Chemo has gone as well as can be. Struggles for about 8/10 days with fatigue and lots of nausea. Everyone obvi different. Anyhow, my husband didn’t have a choice when first diagnosed given his location. We got a second opinion obvi and They concurred with the first. Have you gotten a second opinion yet? Also, have you met with a thoracic surgeon yet? I do know how shocking this diagnosis is (as the wife) however, many here, including myself (same diagnosis as my husband) can guide you the best we can with “things” to check off your list and questions to ask. Sending lots of love to you, your mom and family during this time. It’s not easy at first but I promise, it gets better! Can’t believe I’m able to say that xx
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