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LouiseB last won the day on December 23 2019

LouiseB had the most liked content!

About LouiseB

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  • Birthday September 22

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    Not a patient
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    Husband (patient): golf, reading, pottering in the garden.
    Me: golf, tennis, paddling, wildlife refuge volunteer.
    My intro: https://bit.ly/2I5SotX

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  1. All I would add as a heads up is to make sure her oncologist is fully aware if your mom happens to have a history of any kind of auto-immune disease, such as lupus, ulcerative colitis, crohn’s, etc., as immunotherapy drugs like keytruda may possibly cause a flare up. Sending best wishes to you and your mom.
  2. Hi Ted, The decision is of course yours alone, but I know you will find terrific resources, help and support on this forum. I certainly did! It’s helpful to hear others’ experiences, so I will just say I’m caregiver to my husband who had a lobectomy (robotic) in May 2018 having been (correctly) diagnosed with early NSCLC adenocarcinoma (stage 1, but restaged after surgery because it was larger than expected). Both his upper and middle righthand lobes were removed. We were totally guided by our amazing team of professionals and are grateful that that was our/his decision. I
  3. Hi Katie, Glad to hear your mom came through the surgery well. Yes, everyone reacts differently to chemo, so this is just my experience. My husband had surgery for adenocarcinoma last May and followed up with 4 cycles of chemo, Cisplatin and Alimta, starting in June and ending late August. I read up about all the possible side effects and was ready for the worst, but his journey was extremely straight forward. He certainly did suffer from tiredness and loss of appetite/nausea, but none of the other unpleasant side effects such as tinnitus, mouth sores, numbness. He took precauti
  4. Hi Dlh, So sorry you have to go through this but, as you can already see, you have tapped into a wealth of knowledge and support here. My husband’s case sound similar to you: nsclc: upper and middle right lobes only, lymph nodes clear. He had his pulmonectomy (robotic surgery) at Queen’s in Honolulu last May 7. Yes, it was scary, yes it was painful, but all that passes. The nerve pain others have described is likely but can be managed, and my husband has none of that any more. He had adjuvant chemo (4 cycles of Cisplatin/Alimta) and we were happy to do it, for the extra feeling of se
  5. Dammit, sorry to hear this, Susan. Wishing you all the best with this latest hiccup!!
  6. I’m beginning to realize VATS and robotic are closer cousins than I thought. My husband goes into surgery early Monday morning, so we’re hoping for a smooth operation and no complications!
  7. Many thanks Bruce. I will definitely take that advice to heart! So glad to hear your outcome! Aloha - Louise
  8. Many thanks, Tom. Yes, wonderful to get tons of great information so quickly. I had read about Hope Lodge, but it seemed to indicate it was for cancer patients and caregivers to share a room, not just for caregivers while patients are in hospital. I will definitely contact them to check it out, mahalo! Interesting to hear of your Kaua'i experiences. The training definitely sounds like a tough duty! We will certainly plan for chemo, if necessary, to be administered on our island. I know of one or two oncology centers here, which I assume is where we might be sent for post-op trea
  9. Oh my goodness, Lbelle, what a journey!! I'm so sorry to learn that you had to deal with such a turn of events, having expected a relatively easy road after the initial diagnosis. This is precisely the kind of thing I am concerned about for my husband, but I am grateful for all your details and to at least be prepared to deal with the unexpected, even though we are naturally thinking positively and hoping for the best. I'm glad to hear that at least the robotic surgery was easy to heal from. I was relieved when the surgeon said that was the route he was taking, and was quite surprised not
  10. Aloha Bridget, Susan, Laurel, Steff! Oh, this is amazing. Thank you all for your quick replies and great information. It's interesting to hear different stories and suggestions. I had not thought about a wedge pillow and, even though it seems it may or may not work, I shall definitely order one. Living on a remote island, we have to order anything out of the ordinary online and get it shipped, so it's good to know this sort of thing in advance, and I'm sure I'll find someone else who can use it after he's well, or if he doesn't like it. I also hadn't thought about a shower chair. He migh
  11. Hi Lbelle, I'm new to this site, and just found your thread, so I'm sorry I'm late to the game. How are you? What surgery did you finally get, and how have you been since? I've found very little discussion of robotics on this site yet, but it's early days. My husband is scheduled for a robotic lobectomy next week, so of course I'm interested to hear from others and to learn of any personal stories, pros and/or cons! I do hope your recovery has gone well. Best wishes, Louise
  12. I hope everything is moving along for you Paula. Just to add to the above, and for those who come after us, I can say we have had a similar experience. My husband has NSCLC and we've had the same feeling of urgency, while being scheduled for one test after another that seemed to delay the actual treatment (in our case: lobectomy scheduled for Monday 5/7). We are learning that not only is that typical, but that all these scans/biopsies/tests are important for the surgeon to be as well-informed as possible prior to and during surgery. Still, it ain't easy waiting. As to being a pest.
  13. Aloha! Firstly, I'm delighted to have found this site. I've done a lot of reading since my husband was diagnosed, but now it's helpful to find an interactive site where I can read about real folks' journeys, and ask questions of those who have been or are going through similar experiences. My husband's diagnosis was confirmed March 20 2018, five days after his 64th birthday: adenocarcinoma, right lobe. We are so fortunate that it's been identified as stage I, and appears to be restricted to one lobe. We've gone through the entire waiting game as I guess everyone does: chest x-ray in Febru
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