BridgetO

Update from cancerland. My wife had a mastectomy yesterday. She was discharged to home just a few hours after her surgery. So now I'm in the caregiver role full time. Yesterday was difficult, both for her and me. Neither of us got much sleep the night before, since we had to be at the hospital at 5:15 AM. We didn't know whether she was going to be released same day or not, so had to prepare for both situations and were up late. When she was discharged, she was woozy and wobbly on her feet. I wasn't sure if I could help her up our front steps without us both ending up in a heap (my balance is none too good), so I called some friends for assistance and we all got in safely. She got less wobbly as the afternoon went on, but she was throwing up all day, despite anti-nausea meds. Fortunately the hospital gave us a supply of barf bags. By bedtime I was toast. We both slept well and today is much better. No nausea, pain relieved by tylenol and ice. I'm being a more relaxed nurse. Friends are signed up to bring us food for the next several days, which is wonderful. Got homemade bread yesterday and the same lovely folks who helped me get my "patient" into the house yesterday are bringing ice cream today, because it's my birthday --78! Things are looking up. Bridget O

Tom, I'm so sorry to hear about your increasing pain. Do you have a pain specialist or palliative care doc on your team? I wish I could email some pain relief and good sleep, or just send it through the air. Or something. You are a model of hope to so many of us. It hurts to see you suffering. Hang in there, dear Tom.

Yow! Ray, you've been through a lot! Thanks for your story. Hearing that you are having a good life will be an inspiration to many.

HiJohnny, I'm a survivor of three primary cancers. I don't have any living close family except my wife (and her mom and sisters). I've been open with people I know from the time I was being diagnosed. I've found that being matter of fact about it makes it easier for others. Cancer, especially lung cancer has a bad reputation. So far as it being an illness, and a hard one, that rep is justified. But there's also a stigma, for lung cancer especially. I think that talking about it helps demystify it and helps reduce the stigma. My mother, who wasn't a role model for me in a lot of things, was a role model in sharing and being matter of fact about cancer--she had two of them. Her openness about this helped me be less fearful and anxious about my own cancers. It seems to me that illnesses that are hidden or secret can create more stress for the patient and for loved ones I know that all families are not alike . I know someone who went to great lengths to hide her cancer from her mom, who was ill and fragile. She went so far as to get a hairstyle that could be easily duplicated and then got a wig that duplicated it to wear when her hair fell out from chemo. So I understand that all families are not alike and we each do what we need to do and who and when to tell what is a personal matter. All the best to you in dealing with your cancer and your family.

Hi Johnny and welcome! I' m glad you found us. Let us know how we can support you.

About monoclonal antibodies: Some types are used as targeted therapy for lung cancer. A medication name ending in "-mab" is a monoclonal antibody, for instance, pembrolizumab (Keytruda).

You are truly an original, Ken! Both your chylothorax and your treatment (octreotide?) are things I've never heard of. I do hope you become less original soon.

I hope magnesium gives some relief. I suggest you also try acupuncture. As you say, it's a crapshoot, but it's a fairly safe one. It might help but it probably won't hurt. I had acupuncture during my treatment for 3 different cancers. It helped some with side effects of treatment and it definitely helped with stress reduction and relaxation, which helped with pain. For some other things, it didn't work but I'm pretty sure it didn't cause me any harm. Acupuncture works best if you can have it on a regular basis, two or three times a week. A single treatment might be helpful, but less likely.

This is great to hear!

Rikke, Hamburger Helper is a box of stuff (dry noodles, usually, and some dry sauce mix. )You saute and break up a pound of hamburger meat ("mince" I think you call it over there) drain off the fat , add water, milk, or whatever else it tells you on the box, and cook it until the noodles or whatever are done. It comes in various flavors-- my friend requested Stroganoff, and also asked me not to drain the fat (!). Some people like it. Not me, for sure!. It's a classic American family fast dinner. Thanks Pam and Rikke for the kind words and prayers.

Update from cancerland. My wife's breast biopsy showed cancer. She had a PET scan Friday, no results yet. She meets with the surgeon tomorrow, expects to be scheduled for mastectomy. Yet another one in cancerland: I just learned that a guy I used to work with, who I had heard nothing of or from in a couple of months has prostate cancer metastatic to bone. I dropped in to see him at a long term care place. He told me on the phone that he couldn't stand the food there--his only complaint!-- and asked if I could make and bring him some Hamburger Helper, which I did, although it was not something I would ordinarily fix. While I was there the staff brought him his dinner and he told them to take it away, he was going to eat what I brought in the sack. They wanted to see what was in the sack to see if it was OK for him to have, and he refused to show them. They weren't happy but did give him a fork and napkin. When I saw my friend I was glad I had brought something he would eat (and also some salt and pepper he asked for) even if it almost certainly wasn't on the approved list. He was always a thin man and now he is emaciated. BTW- some good news, my kitty is now fine!

Hi Sophia, I agree with Tom that the best way to ward off recurrence is to follow your screening scan schedule and also to get biomarker testing. My HMO did biomarker testing automatically even though my NSCLC was 1a. I do differ with him somewhat about complementary therapies though. I'm copying here something I wrote a couple of weeks ago on another thread here, where I elaborated on my experience and views on complementary therapies, for what it's worth. I was fortunate that the local clinic I refer to offered the therapies I listed for $150 per month, I wish you all the best. I Keep us posted! "Hello! You've gotten some good advice from folks on here about caution. I've had 3 primary cancers. My most recent was a stage 1 NSCLC, which needed only surgery (lobectomy) and ongoing surveillance. My second one was a rare and aggressive gynecologic cancer, stage 3, for which I had a huge surgery, concurrent radiation and chemo and additional chemo. My first was a stage 1 breast cancer, with lumpectomy and radiation. Beginning with my first cancer diagnosis and then again with the other two, I went to a local clinic that offered complementary therapies. I had acupuncture two or three times a week, supplements and Chinese herbs, and shiatsu massage twice a month. The treatment was directed by a naturopath, who knew a lot about cancer and conventional treatment and who was very supportive ov conventional treatment. I ran all my supplements and herbs past either my doctor, or when I was having chemo, through the oncology pharmacist. The onc pharmacist advised against one supplement because it contained a raw animal ingredient, not a good idea when immunity would be impaired by chemo, and my thoracic surgeon advised against one Chinese pill because he didn't know what was in it. In both cases I followed advice. I found acupuncture helpful with side effects of chemo, especially nausea, and also great at combating anxiety. The herbs and supplements? I'm not sure whether they helped or not, but today, 15 years after my first cancer, I've had no recurrences and I'm NED on all 3 cancers. With my gyn cancer especially, which had a "dismal prognosis" this is remarkable. I really didn't expect to live so long, (12 years after that Dx) much less be NED all this time. So I'd use these complementary therapies again. Everybody's different in their comfort level with things that are "unproven" in a Western scientific sense and I think each of us needs to make our own decisions about this stuff. I do have some things to suggest for people who want to try complementary therapies of any kind 1. Think of them as "complementary" to your conventional medical treatment, not as "alternative". For example don't abandon your chemo in favor of "green drinks". 2. Avoid anything advertised as a sure cure. There really isn't any. I like to think in terms of what might make me feel better or might be helpful. 3. Beware of anything that seems too far outor is illegal. I know that "too far out" is not an objective criteria, but do use your common sense. 4. Be careful of spending TOO much money on these therapies, Again this is an individual thing. But don't use the rent money. 5. About diet-- Healthy food is great, but some treatment regimens, like chemo or radiation, can make eating a problem (some foodsmay taste/smell awful, problems swallowing, nausea, diarrhea, etc, etc). In that case getting enough calories and fluid needs to be the priority, even if it means not following what might otherwise be your " ideal "diet. If all you can eat is ice cream, do it. If it's long term, see a dietician. So, there's more of my history and opinion than you probably want!"

Happy Cancerversary! You've been through a lot and I hope your next six are uneventful, cancerwise that is. Have plenty of fun events.

Tom, It doesn't usually rain buckets of chyle, though! Ken, this sounds like a big drag! Do they know why this chyle is leaking?

Hi Jeff, your mom is really fortunate to have you as a support! She has gone through, and is still going through, a lot and your help I'm sure has made it possible for her to keep on going. Navigating the insurance alone is an invaluable support. All my best to her and to you. Hang in there, both of you.

Thank you Rikke, Pstar, Tom and Lily for the kind words and good thoughts. The latest wrinkle is that I didn't go to New York as we had planned. Our cat got sick and needed care on an emergency basis the day before we were to leave. We had a reliable house and pet sitter lined up, but couldn't expect him to care for a vomiting kitty. Wife went ahead to New York. I insisted she go because she needed the distraction and because I didn't want to AGAIN disappoint our friend who has been looking forward to our visit. (Last postponement was the day before were to arrive- wife had covid). No diagnosis yet on kitty, who can't keep food down. Today she's in for x-rays. Bleah!

I've been following Tom's posts for years and have read his book. I met him personally at a Hope Summit. I have seen that he really does, as you said, make the most of his life and he's been an inspiration to a lot of us here, including me. You can have a good life. It may look different than what your life before cancer, what we call " a new normal." My lung cancer was Stage 1a and I only needed one lobe removed. Neither the loss of the lobe nor the surgery affected my life much. But an earlier non-lung cancer did affect me a lot. Actually it wasn't the cancer itself, but the treatment-- a big surgery that took out a whole load of lymph nodes as well as other things, some of which I didn't even know I had (what's an omentum?). Then concurrent chemo and radiation that damaged a lot of what was left. And additional chemo that left me with some neuropathy. I for sure have a new normal! But it's a good normal. It continues to change with age. (I'm 77). I didn't think I would live this long. I'm grateful for survival. I can still travel, one of my great joys. But the style of travel has changed. I'm working part time at a job I enjoy and which is really flexible. All is well in my life. Who woulda thought? Rooting for you to have successful treatment and find your new (good!) normal. Bridget O

Hi All, I feel like I'm awash in cancer. It's not mine and it's not lung cancer, but this isn't good news. First, and closest to me, my wife, who had treatment for breast cancer about 3 years ago is facing a possible recurrence. A suspicious finding in a mammogram led to a repeat mammogram, 2 ultrasounds and yesterday a biopsy. The doctors say it's very suspicious for malignancy but she won't know for sure until she gets biopsy results. In the meantime, we're going on a trip to New York City that's been repeatedly postponed, once because of the pandemic and more recently because she tested positive for COVID the day before we were to leave. I think this trip will help us both through waiting for biopsy results. Second, one of my closest friends told me yesterday that she has just entered into hospice. She has soft tissue sarcomas which are spreading despite numerous surgeries and she's opted for comfort care rather than surgeries more radical and disabling than those she's already had. Third, another of my closest and long time friends has had for many years polycythemia vera, a rare blood cancer that causes overproduction of red blood cells. She's been treated for this for about 20 years, but now it's morphed into myelofibrosis, the bone marrow having been damaged by the PV to where it can't produce enough red or other blood cells. Her symptoms, both of the illness and the treatment, which used to be pretty tolerable, have become painful, scary and depressing. She's not coping well, but who would be? So, I feel like I'm surrounded by this wretched disease, even though I'm NED. Good thoughts, prayers, mantras, crossed fingers, peaceful vibes or anything else positive would be appreciated. Bridget O

Hi Ginger and welcome. Like you and Lou, my LC was caught early on a scan you could probably call incidental. I had a right lower lobectomy, diagnosed ad NSCLC Adenocarcinoma Stage 1a. . This was in 2016, so I'm now almost 7 years out and NED since my surgery. I'm 77 y/o, working part time and have a really good quality of life. Keep us posted on your recovery. I wish you all the best. Bridget O

Yep, great news! Now hoping for that chyle to get back where it belongs.

I've heard of chyle, but I've never heard of chylothorax ! Like Tom, I went on line to see what I could learn about it. You're a rare bird, Ken Horse! I wish you all the best in getting to the bottom of this and back to normal. Keep us posted.

I agree with Tom that your dad has a tough row to hoe. I don't have suggestions other than to agree with Tom about seeing whether precision radiation is an option. My mom had metastases in her lower spine from breast cancer and localized radiation gave her a year pain free, which was definitely worth it to her. It sounds like your father's mets are more extensive than my mother's were, but on the other hand this was over 25 years ago and radiation is more advanced in approaches than it was then. All my best to your father and to you.

Hi Rebecca. Hang in there. If you try Keytruda (or chemo or any other treatment) and you don't find it tolerable, they you can try something else. or consult a palliative care doctor to find out how to best deal with side effects and have the best possible quality of life. I agree that you're really NOT at the point where discontinuing treatment is a good decision. If you have concerns about your doctor's treatment approach a second opinion is a great idea. I got a second opinion on treatment for a Stage 3 cancer (not lung) and on the basis of that opinion chose to have more treatment than my medical oncologist wanted to do. Today, 12 years later, I'm still NED. All my best wishes to you.

Hello! You've gotten some good advice from folks on here about caution. I've had 3 primary cancers. My most recent was a stage 1 NSCLC, which needed only surgery (lobectomy) and ongoing surveillance. My second one was a rare and aggressive gynecologic cancer, stage 3, for which I had a huge surgery, concurrent radiation and chemo and additional chemo. My first was a stage 1 breast cancer, with lumpectomy and radiation. Beginning with my first cancer diagnosis and then again with the other two, I went to a local clinic that offered complementary therapies. I had acupuncture two or three times a week, supplements and Chinese herbs, and shiatsu massage twice a month. The treatment was directed by a naturopath, who knew a lot about cancer and conventional treatment and who was very supportive ov conventional treatment. I ran all my supplements and herbs past either my doctor, or when I was having chemo, through the oncology pharmacist. The onc pharmacist advised against one supplement because it contained a raw animal ingredient, not a good idea when immunity would be impaired by chemo, and my thoracic surgeon advised against one Chinese pill because he didn't know what was in it. In both cases I followed advice. I found acupuncture helpful with side effects of chemo, especially nausea, and also great at combating anxiety. The herbs and supplements? I'm not sure whether they helped or not, but today, 15 years after my first cancer, I've had no recurrences and I'm NED on all 3 cancers. With my gyn cancer especially, which had a "dismal prognosis" this is remarkable. I really didn't expect to live so long, (12 years after that Dx) much less be NED all this time. So I'd use these complementary therapies again. Everybody's different in their comfort level with things that are "unproven" in a Western scientific sense and I think each of us needs to make our own decisions about this stuff. I do have some things to suggest for people who want to try complementary therapies of any kind 1. Think of them as "complementary" to your conventional medical treatment, not as "alternative". For example don't abandon your chemo in favor of "green drinks". 2. Avoid anything advertised as a sure cure. There really isn't any. I like to think in terms of what might make me feel better or might be helpful. 3. Beware of anything that seems too far outor is illegal. I know that "too far out" is not an objective criteria, but do use your common sense. 4. Be careful of spending TOO much money on these therapies, Again this is an individual thing. But don't use the rent money. 5. About diet-- Healthy food is great, but some treatment regimens, like chemo or radiation, can make eating a problem (some foodsmay taste/smell awful, problems swallowing, nausea, diarrhea, etc, etc). In that case getting enough calories and fluid needs to be the priority, even if it means not following what might otherwise be your " ideal "diet. If all you can eat is ice cream, do it. If it's long term, see a dietician. So, here's more of my history and opinion than you probably want! Best wishes to your husband, and to you, too. Be sure you take care of yourself, too.

Hi Kristn, I have no similar experience. You are "kinda homeless" . I don't recall anybody on here posting about the kind of pain you describe. So far as I know, Folfox isn't used as a treatment for lung cancer. Although your husband's tumor is in his lung, it's still colon cancer and will get treatment aimed at that. Some of the info on this site many be relevant, but the chemo will be different. Your husband might want to ask for a referral to a palliative care doctor. Sometimes people think of palliative care as the same as hospice or end of life care. It isn't. Palliative care works to help people who have pain or other symptoms that impair their quality of life. Their may be other or better ways than opiates to manage your husband's pain. Here'e a link to information about palliative care. Best wishes to both of you. https://www.lungevity.org/for-patients-caregivers/navigating-your-diagnosis/treatment-options/palliative-care