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Showing content with the highest reputation on 02/16/2020 in Posts

  1. 1 point
    Blossomsmom

    Reoccurrence and hospice

    After her reoccurrence in November and being hospitalized in December from an adverse reaction to Taxotere, my Mom came home under the care of Hospice. She rallied and was able to be at my house on Christmas Eve with all her kids, grandkids, great grandkids and great great granddaughter. What an evening it was! Very emotional but such a joy to have everyone there (25 of us) sitting down to Christmas Eve dinner. And to think, none of us would’ve been there had it not been for my Mom. Since then, she has done pretty well. She’s back to her “normal” routine. Still drives and lives independently. Her hospice nurse visits once a week and is wonderful with my Mom. I actually think my Mom looks forward to seeing her every week and I feel good knowing hospice is in place and a phone call away if needed. The downside is when things do arise, such as dizziness she’s experienced this week, there’s no way to know for sure if it’s because the cancer has metastasized to her brain or if it’s caused from being dehydrated a little from her ongoing battle with diarrhea. I understand the concept of just treating the symptoms and making her comfortable but I guess I’m still not used to the idea of not knowing exactly where this is going and letting nature take its course. As her daughter it’s been my job to make sure she’s doing ok and getting what she needs in the way of medical treatment so it’s hard to now put that in someone else’s hands. It’s still hard to accept that this isn’t something that I can fix much less control. Especially when I look at her and she doesn’t look like there’s anything wrong with her. She has handled all of this with so much courage and grace. I wish I had half of her strength. I have the utmost respect for all of you who fight this beast on a daily basis. And I thank you for the strength and support you provide to others involved in the battle.
  2. 1 point
    MyWifeSCLC

    Wife Diagnosed w/ LS-SCLC stage 3

    Yesterday my wife's hair started falling out. That's 15 days after her 1st round of chemo started on Jan 31st. Maybe the PET scan on Friday pushed the hair over the edge ... just kidding ... him maybe not. I think I reacted more to her hair falling out than she did. Her sister said head bands and covers are in order so she would see about them. We go see the radiation doctor for the first time tomorrow. I guess she will get the cancer area marked up on her chest. The sores in her mouth are gone and she is feeling much better. I guess that means 1 week to enjoy this until her 2nd round of chemo starts Tuesday week. Her 1st radiation treatment starts next week also.
  3. 1 point
    Welcome Shane18, Sorry to hear about your father's diagnosis; you've already had some good ideas and suggestions but will add our own as well. My 70-y.o. husband was diagnosed with stage IIIB lung cancer last April. We have a Medicare Advantage Plan which has a cap on out of pocket expenses. However, even with the cap, we could not pay the patient responsibility portion of the bill. After 2 months of tests, prep, chemo and radiation, the amount of bill if you had no insurance was $82K. Our primary provider was a cancer care clinic approx. 100 miles away; we also had services from a local hospital 22 miles away, a Providence Health facility. We were encouraged by Providence Health staff to apply for financial assistance which we did and were granted 100% (no cost plus they even refunded co-pays we had already paid !) - it was time limited and ended on Feb. 7th. Since Providence is a charitable entity run by a religious order, we were so grateful. Providence also suggested we apply for financial aid from our primary provider. In our contact with the cancer care clinic, no one had ever brought up the idea of applying for financial aid. I then inquired and found out there was a Patient Navigator who supplied the application. Much to my surprise, financial aid was also approved at 100% with no time limitation which basically means they are accepting the amount the Medicare Adv. Plan pays as payment in full. Then I applied for financial aid from the business that bills for the Scans which was approved for a 25% reduction in patient portion of bill (again ins. pays most of bill) - we are now paying for these on a monthly payment plan. We can manage to pay the smaller bills for lab tests, etc. as the insurance pays for most of the cost. Hope some of the above may be useful. It is hard enough to deal with a cancer diagnosis as well as the cost involved which can be overwhelming. My husband started treatment 6/17/19 & completed chemo and radiation on 7/29/19; started immunotherapy on 9/17/19 and will continue one treatment every 2 weeks for one year; there are "staging" scans approx. every 3 months during treatment (to determine if tumor, nodule has shrunk with treatment) & monthly lab tests. There will be follow-up scans approx. every 3 months I believe - not sure yet how long that goes on for. If treatment is successful, NED no evidence of disease - that would be the best outcome of course. So far, we've had good news since the lung tumor and lymph node have both shrunk considerably in size. If treatment is not successful, assume there would be a 2nd course - 6 weeks radiation 5 days a week and 1 day a week of chemotherapy followed by immunotherapy every 2 weeks for a year. There is a patient/survivor on this site named Robert Macaulay from BC, Canada, who posts on a regular basis - he could be a good source of info. Since I'm a "newbie" - will try to navigate your post so he sees it - will try but am not good at this , lol. Georgia
  4. 1 point
    Thank you guys- awesome. We are on the right track. In some way we were prepared for this. when I started Alectinib, the muscle pains were really terrible. The stairs may as well have been MT Everest. I did everything I could conceivably think of because I didn’t want to have another dose reduction or come off the meds altogether DFK- I really tried to plan ahead and sent him to PT for six weeks. So I guess it could have been worse. I’ve got the high quality bands, myofacial release roller, the message therapist and a rehab trainer. Curt- I’ve taught him some Qi Gong moves that can be done surreptitiously (he’s a tall guy like DFKs husband- whose gonna mess with him if it looks silly??). He LOVES your suggestions, hahaha- he will be treated like a king. He got quite the chuckle out of it. Tom- hubby isn’t much of a bath guy but I did get him into epson salts- only complaint was it smelled too “girly”. We have great insurance now through my former employer but after month 19 of COBRA the premium will increase 150%, the “affordable plans” on the Exchange were not much better. Hopefully we’ll be able to drop COBRA. I’m pretty optimistic this will work out- where else can you get a comprehensive benefit package, work 17 hours a week and show up in ratty old clothes? Love you all! Michelle
  5. 1 point
    DFK

    Newbie

    Polly, Great on your swallowing improving with regular honey, in an ideal world, pain should always be non negotiable. I am back to my normal self......rough past three weeks but forward and upward. Can't wait to get back into the swing of things. One more tooth needs to be addressed, then I am home free.....for now and that's all I can hope for today. Grahame is posting on Durvalumab forum....please check it out. I'm sorry but I don't know how to creat a link to it. Happy Valentines Day. Good to hear from you, DFK
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