Jump to content

renij

Members
  • Posts

    9
  • Joined

  • Last visited

  • Days Won

    1

renij last won the day on October 6 2016

renij had the most liked content!

Profile Information

  • US State (if applicable)
    ARIZONA
  • Gender
    Female
  • Status
    No

Recent Profile Visitors

727 profile views
  1. Hi DK, Im also in AZ - my Dad was diagnosed with Stage IV NSCLC about a year and a half ago. I've been wanting him to try medical marijuana if it helps with side effects. Can you tell me which strain of cannibis and dispensary you use? thanks!
  2. Hi Chime, My dad was 72 when diagnosed at Stage 4 Squamous Cell Non-Small Cell Lung Cancer. He is now 73 and over a year and a half since diagnosis. From all I read, surgery with chemo after is the standard of care. My dad was a lifelong smoker who had COPD at the time of diagnosis and so little lung capacity that they couldn't do surgery so they did this new type of radiation - Radiosurgery on the spots on his lung and spine. That procedure was successful in "killing" the cancer in those spots, but he also had a spot on his liver which was inaccessible for that treatment. My dad's oncologist started him on immunotherapy before chemo (non-standard) but that didn't stop the progression so they started chemo. He went through less than the full cycle of chemo (once a week, but I can't remember how many weeks) and had to stop because the chemo was damaging his kidneys. After 4 weeks of no chemo, his kidneys are better but still not back to baseline. Nephrologist suggests trying a new chemo drug that is non-platinum based. So now we need to figure out what other options there are for chemo. As for my dad's experience, he was never sick from chemo - just tired or dizzy. The worse part was driving the 30 miles one way to the oncologist each week. He still wants to try more, so on we go. For your dad, the blood thinners may pose a problem. I know that several options that were discussed we were asked about whether my dad took blood thinners. This website is a good place to get options and positive support. Best of luck to your family..
  3. My Dad Started chemo on May 12 (Carbo/Taxol). He had treatments once a week for 4 weeks then a week off. The last few visits, his bloodwork wasn't what the Dr thought it should be, so they didn't give him the Carbo, just Taxol. Last week, Dr called out of the blue and said he wanted Dad to get an abdominal ultrasound immediately. The following day, Dr asked us to come to his office. It seems the chemo has caused some damage to Dad's kidneys. Now they've stopped chemo until kidneys recover. Question to anyone is, what does this "really" mean? Are we facing a small blip or hitting a wall? Amy insight is appreciated. As an aside, I don't have lots of confidence in the Doctor- frequently forgets Dad's situation, brings in week old labs to appointments, etc. However dad likes him and wants to keep him. Thank you!
  4. Thanks Tom! Dad had follow up with radiation dr today. He told us that the cancer found in dad's spine was "dead"! No growth in the last 6 months. Dad feels good, but really tired and consitipated frrom chemo. All in all, he's doing well. Just wish he felt well enough to do something though....
  5. Hi Meloni, I'm pretty new here myself, but as a caregiver, I know that if my dad asked to do chemo alone, I wouldn't be offended. If he asked my mom to let him go alone, she would have a hysterical fit. So, everybody's different.... If you can talk to your MIL and she's not an overly sensitive person, maybe you can tell her that you want to go alone so that you can meditate or listen to meditation CD's. Maybe if you bring such a CD and close your eyes (basically ignoring her), then she will understand. I would say that you should tell her, not ask your husband to do it - so that you don't cause any issues between them. If she's overly sensitive, then, my advice would be the same! You must take care of yourself and your own wellbeing- if your family doesn't understand, it's OK. They'll get there or they won't.
  6. Tom, Thank you for the reply and the article (I haven't yet made it through, there's quite a lot of technical jargon to look up along the way) If you don't mind my asking... What age were you diagnosed? Were you a smoker? My dad is 72 and was a lifelong smoker - quit only after had to go on O2 at night - so his lungs were too badly damaged to do surgery to remove the cancer.
  7. Thank you for your insights Terribirdy. My dad is stage IV Non Small Cell Lung also, but he doesn't seem to have the EGFR or ALK mutations. When was your husband diagnosed? You say "it isn't a cure", but my parents think that chemo is going to "cure" him. In fact the radiation doctor actually told them that he had "killed" the cancer spot on his lung. I wouldn't think they would use terminology like that knowing there is no cure. I just can't bring myself to believe that my dad will be cured, but I can't tell him that.
  8. I have been trying to find information on the progression of NSCLC and all I find are really general statistics about the 5 year survival rates. I'm really looking for real life examples of how this disease progresses. My dad was diagnosed with stage IV NSCLC over a year ago. He's been getting chemo and we get very generic and often very cheery (in my opinion) explainations of the results of his CT scans from his oncologist. Oncologist: "Good news, the cancer hasn't grown or spread" Me: "Has it shunk?" Oncologist: "Well, no, but it's not gotten bigger or spread" I don't know if that's good news or if he's just being pleasant - I really can't read him. And my parents are kind of "head in the sand" people, so they just go with the flow, but I'd like to know what we are facing. My dad isn't a learned man and he doesn't know how to use a computer to get information about his disease, and he's not really interested in researching it. I've been trying to find information for myself, but all I see are the survival ("I beat cancer") stories or the grief stories after the fact. Not everyone beats cancer. For those who don't, what are the "signs" that we should be going on that family vacation or that we need to start looking into hospice. I own a small business and need to be at work, I really can't have this crash on me, I need to make plans so that I can take care of myself as well as dad and mom. When my dad goes, my mom probably can't live alone (she is prone to falling). And because they "don't want to know", I will be left dealing with loss of dad and the uncomfortable task of telling mom she can't live alone. If I just had a timeline I would feel more incontrol. I understand that not everyone's journey is the same, but are there some signposts along the way? For example, after 2 rounds of chemo, my dad's blood levels have been so bad that he couldn't get his next treatment. Is that a sign that things are going downhill? At this point where tumor shrinkage is stagnated, is that typical of someone who has 6months or 2 years left? I don't feel like I can ask these questions at the visits with the oncologist because my parents truely don't want to know. I feel like they have a right to stay in the dark if they want, and I don't want to ask questions that may sound like I am thinking only of myself. However, I don't think I should have to feel guilty for caring about how this affects my life. I'll be grateful for any information around this sensitive subject.
  9. Dad went for 12 week checkup today - has been on Opdivo and has been feeling pretty good. However, he hasn't been on any chemo yet. Everything I read about Opdivo says that it is for "those who have previously been on platinum-based chemo." The doctor, who has been the only oncologist that my Dad has seen, seemed to think that Dad had been on some chemo previously. I'm concerned that the doctor hasn't been paying attention, since he never prescribed chemo, just Opdivo - and I'm worried about what the concequences of having not had chemo on his prognosis. Any thoughts from the group?
×
×
  • Create New...