BridgetO

Hi Sally, I had taxoterre along with carboplatin for a non-lung cancer. in 2011 It wasn't pleasant, but I got through it OK. I had some side effects. I'n not sure whether they were from the taxo, the carbo, or the combinaiton. I developed some neuropathy in my feet after the first round. I still have some, but it has subsided over the years and is not a problem unless I wear tight shoes. Then my toes will hurt after a few hours. I also had severe anemia which resolved with a transfusion. Also neutopenia, low neutrophils (white blood cells that fight infection.} Be sure to ask your doctor or oncology nurse about neutropenia precautions, You'll probably be told that ANY fever during chemo should be treated as a medical emergency, because you can be quickly overwhelmed by infection, After my neutropenia, I was put on neupogen after each round of chemo and it didn;t recur. I had hair loss. Oh well, it's only hair. I got a wig but didn't like it. I bought a bunch of cute hats and scarves. This may all sound unpleasant. But it was worth it because now I'm NED (no evidence of disease) on that cancer which was Stage 3 and aggressive. BTW, also NED on my more recent lung cancer. I feel well and have good quality of life. All chemo is scary, I think, and especially one you haven;t had before, But hang in there, you can do it! Best wishes to you. Bridget O

I'm honored to have been asked to become a moderator for LCSC. I'm a survivor of 3 primary cancers. I had a Stage 1 breast cancer in 2008 with a lunpectomy and radiation. Then in 2011, a Stage 3 cervical cancer, a rare and aggressive type of cervical. I had a radical surgery, then concurrent chemo and radiation and additional chemo. I had a long recovery with a lot of late occurring treatment side effects, some of which are permanent. During a routine surveillance CT scan for that cancer, a nodule was found in my right lung. In November last year I had a right lower lobectomy, and was diagnosed, as Lauren said, with stage 1 adenocarcinoma, KRAS mutation. I'm now NED on all 3 cancers. Whoo! I've learned a lot about lung cancer in the last year, much of it from the Lungevity website and this forum. And I've really appreciated the support and hope I've gotten from forum members. I've been in a gynecologic cancer support group here in Portland, which has been great. I was hoping to find a lung cancer support group here, but surprisingly for a big city with a big cancer center, there doesn't seem to be one. So this forum has been especially important to me. About me: I'm 72 years old. I was a case manager working mostly with adults with intellectual and developmental disabilities. I retired, sort of, at age 57. Since t then, I've been working at a variety of jobs, when not traveling or having cancer treatment. I spent a year teaching English in Poland. I've worked both as a volunteer and paid staff with homeless and recently homeless people. Most recently, I was back working part time as a case manager. I decided to "retire" again a year ago when I began having tests for what turned out to be lung cancer. I travel when opportunities arise, and I'm always looking for opportunities. I just got back from a women's cancer retreat in Montana. No trips planned right now, but I'm looking for something for spring. I read a lot, do water aerobics 2 or 3 times a week, walk usually daily, do beadwork, and volunteer with a non-profit group for tree-related activities such as pruning small trees. I'm a member of my Neighborhood Emergency Team (NET, these are called CERTs in most parts of the country.) and I'm working with neighbors on my block to prepare for disasters- the most likely one in Portland is a devastating earthquake. It would be as bad as one of the big hurricanes and maybe worse since there would be no warning. So, as you can see I'm busy. I'm determined not to waste my "rare and precious life" ( I think that's from a poem by Mary Oliver), but to do things that I love and that have meaning to me. I try not to worry about the cancers, but of course I do anyway, Generally, I am able not to use up too much energy on worrying. So, Forum folks, please post often. I love to hear what's going on with you and to learn from all of you. Bridget O

Hi Ray and welcome.Boy, you have been through a lot! Alive is a good status. Your story will be an inspiration to those facing drastic treatments. Please keep us updated. . Hang in there. Bridget O

Wow, I'm impressed, too! Good work!

Welcome Wheezer. It sounds like you're doing well. There are always "what ifs" with this disease. I had my lower right lobe taken out in November. I had VATS (video assisted surgery). I currently am NED (no evidence of disease). So now I'm in the "what if it comes back" stage. But I'm doing well, living my life, traveling, enjoying myself. Having cancer has impressed on my that it's important not to waste my time with worry, but to take advantage of every day, every hour. None of us knows how long we have to live. This is true whether we have cancer or not. Cancer just made it clearer to me. Of course, I still worry some. I think it's inevitable, but I usually don't let it get me down. Best of luck to you, Wheezer. This site is a good place to get support and information. Bridget O

Hi, Shoosy and welcome. I agree the waiting is really hard. At least the ball is rolling now. My personal view is that a board-certified oncologist is a good idea. Or, for the purposes of diagnosis, a board-certified pulmonologist. Then, if you should need treatment, probably other board-certified specialists. On the other hand, a non-board-certified oncologist might be OK. You could ask your primary why he referred you to this particular oncologist and not a board-certified one. Are you in an area with limited medical resources? If you're feeling uncertain about the testing and diagnoses you're getting. and if your insurance and other circumstances permit, you could consider a Comprehensive Cancer Center, at least for a second opinion. You can find a listing of these Centers here: https://www.cancer.gov/research/nci-role/cancer-centers. I'm sure other forum members will chime in with opinions about this. You'll find a lot of information and a lot of hope here. Good luck to you and your wife. Bridget O.

I'm so sorry to hear about your brother's death and about his pain and suffering. My thoughts are with you in your terrible loss. Bridget O

Hi Larry, I'm so sorry to hear about your lymph node. My lung cancer was an early one and so I don't have a similar experience. You will find others here who have. If you haven't already, I suggest you look at the thread entitiled "Take that, stupid lymph node " on this Forum under Member Updates. I think you'll find hope as well as helpful suggestions on this site. Bridget O

Hi Sallie, I'm so sorry to hear about your dad's cancer. I would suggest he get a second opinion. I see you are in Ohio. The National Institute of Health has some designated cancer centers in your state, which might be a place to start looking . Information is at www.cancer.gov/research/nci-role/cancer-centers .Others on this forum may have other suggestions about how to find someone. Best of luck to you both. Bridget O

Yay for your good scans!

Risk of infection is largely due, I think, to low neutrophils, and you won't know what that is unless it's tested. Have you had low neutrophils during your chemo? Have you been on a "neutrophil booster" such as neupogen or neulasta? I'm a big fan of travel. I had chemo and radiation (for an earlier non-lung cancer), followed by additional different chemo. Between those two, I took a trip across country by train, something I'd been wanting to do for a long time. This was against the advice of my medical oncologist, not because of infeciton risk but because she wanted me to start the second chemo regimen right away. I told her it would have to wait a week. If it were me, I'd be inclined to go on the trip, unless I'd had severe neutropenia after rounds of chemo. Ir would partly depend on where I was going, also. I'd be disinclined to go to less developed countries or some adventurous outdoor activities for fear of unaccustomed bacteria and also because of the difficulty of getting medical care if you do become ill. I'd also think about how to reduce airplane germs--those cause me colds and such often. You can take antibacterial wipes to wipe doen your armrest, tray table, etc, and I'd consider taking my own pillow or pillow cover and blanket. And definitely take and use hand sanitizer. A couple of women who were in my support group continued to travel a lot, despite advanced ovarian cancer and ongoing treatment. One went to China between rounds of chemo. Another went on a tour to the Galapgos Islands, became ill, and had to be airlifted out. She recovered and was philosophical about it " Oh, well, I had good travel insurance". She continued to travel . Both these women were big role models for me. They continued to live actively, rather than waiting to die. I think it all depends on your risk tolerance, Nothing is risk free. If you decide to go, I wish you safe and happy travels. Bridget O

My grandma (who did not have lung cancer) had a period of delusions and hallucinations as a result of Darvon, an opiod pain med that's no longer available. Could your mom be reaction to some kind of med?

Hi and welcome! I'm glad you're advocating for your mom. I haven't had immunotherapy and know little about it so I can't be much help there. I have recently seen articles, but I can't remember where, that say that treatment choices shouldn't be based on age but on the patient's general health. I remembered this article because I'm 72 and in pretty good shape. I sounds like your mom was in fine shape prior to the cancer. Does anybody remember this article or specifically where it was? If nobody responds to this question, you (or I, for that matter) could address it to Katie B or Lauren on the Lungevity staff, who might know. Hang in there. Bridget O

Welcome here! Your mom has sure been through a lot! You'll find hope and support on this site. I hope that you'll get some replies from people who have had experience with Opdivo and "itises" . Hang in there. Your mom is lucky to have you there. Bridget O

Hi Allyn, Welcome here! I'm sorry for what your wife and you are dealing with. I'm a survivor of an early stage lung cancer (and two other non-lung cancers). There are a lot of people on this forum whe are survivors of Stage 4, and their caregivers. You'll probably hear from them. You can find a lot of information, wisdom and hope here. All the best to you on this unwanted and unexpected journey. Bridget

Yay Sandra! I'm so gad for you. Bridget

I did the survey. It took me 25 minutes, not 10. I don't think I''m slow! It seems like a worthwhile thing to do in any event.

Hi Megha, Welcome here. I'm so sorry about your mom''s situation. If she isn't already in hospice, I suggest you check it out. Hospice should be able to help her be more comfortable. My mom, like Tom G's, was in hospice at the end and it was a godsend. Bridget

Good to hear from you. I'd been wondering how you are doing, Hang in there! Bridget

It's good you have some clarification, even though it's not very clear . It sounds like you're doing a good job informing yourself and making decisions about your treatment. I've been in that position, though not with my lung cancer, which was 1A. On my breast cancer, I was offered long term estrogen surpressing medication. (Who knew we still have estrogen after menopause--it's produced by fat, and I am well equipped with that.) These aromatase inhibitors were becoming the standard treatment at that time, but after seeing the stats about how much they reduced risk of recurrence and reading a lot about side effects, I decided to forgo them. On my cervical cancer, which was aggressive, stage 3 and a rare type, one oncologist on the tumor board recommended additioal chemo, more treatment than my oncologist recommended. I got a second opinion, by a doctor who had some clinical experience with this type of rare cancer (there are no studies of it) and opted to "throw the book at it" and my onco agreed to do the additional treatment. So, now I'm NED on both those cancers. I don't regret my decisions at all and am grateful for oncologists who respected what I chose to do. I'm a firm believer in science, and I also think that medicine involves some art and intuition both on the part of the doctors and the patients and can help guide informed decisionmaking. Best of luck with you in your path forward, Bridget

Hi Pegi, I just saw your post of July 27 and I wonder whether what your husband needs is physical and occupational therapy in addition to palliative care. If you haven't worked with PTs and OTs before, you might be surprised how many things they can help with: finding ways for a person to get around more easily and safely in their home, getting mobility and adaptive equipment to make things easier, teaching caregivers how best to assist someone without hurting themselves, etc. Is your husband on Medicare? I think Medicare will pay for this. You may need to shop around some. When my mother broke her hip, the PT who came out was helpful and really good but the OT was not so great. I did get from the OT an equipment catalog so I could look through it to see what might be helpful. Just an idea I had. I wish you all the best. Bridget

Hi Karen, Welcome here! And hang in there. There is hope here. You will probably hear from others who have had a lot of things go wrong in their lung cancer journey and who have survived and are having good lives years later. Maybe you've read some of their stories already. My lung cancer was adenocarcinoma Stage 1A, and everything went OK with my surgery in November 2016. I don't need any more treatment now,, only regular CTs to look for recurrence. I've had chemo, though, for a different (rare form of cervical) cancer that was Stage 3. My lung nodule was discovered in a routine CT scan that I had to watch for possible metastasis from the other cancer. I may be the only person you will ever hear say she was relieved that it was "only" lung cancer. A metastasis would have had a much worse prognosis. Lung cancer of any stage is bad enough. My neutrophils also crashed twice during chemo, once was to zero. I had neulasta with no side effects from it, fortunately. I had plenty of side effects from concurrent chemo and radiation, though, so I understand how discouraging it all can be. I'm 7 years out from my Stage 3 cervical cancer diagnosis and also 9 years out from a breast cancer diagnosis. I'm now NED on all three cancers. My life is really full and happy these days. For me the difficulities of treatment, including those that are still hanging around, have been worth it. I wish you all the best. Bridget

Hi Nan and welcome, Everybody who replied said all the things I would have said==sleeping elevated, the pool, etc. I also had 1A adenocarcinoma. I was lucky to be able to have VATS for my lobectomy. My surgery was last November and I'm doing well. I wish all the best for you and your husband. You'll find hope and help on this forum, I think. Bridget

Hi Vinnpal and welcome. Is it your neutrophils that are down? If so, ask in future cycles of chemo if you can have neupogen or neulasta. These are injected medications given after chemo that keep your neutrophils from crashing. Best of luck. Hang in there! Bridget

Hi Sharae, When I had chemo for a non-lung cancer, my neutrophils (a type of white blood cell that fights infection) crashed. I had a fever but no other symptoms and was sent to the emergency room My neutophils tested at zero! I was given antibiotics. After my next round of chemo, I had Neupogen. This was a series of injections I gave myself- it was easy, small needle, right in the belly, where I had plenty of fat. I had no further white blood cell problems. As Tom says, bone pain is a common side effect, but I didn't have it, nor any other side effects. Neulasta is the same drug in a long lasting form, so that you just get one shot and don't have to give them to yourself. As a result of my experience, two things I would suggest for your uncle, 1: Check out payment assistance aa Denzie suggests. If your uncle has white blood cell depletion after cancer, medications can be a life-saver. 2. If he has fever during chemo, call your doctor or clinic at once! If you can't get hold of him or her, go to the ER. Typically fever is the only sympton of an infecton when you have neutropenia (low neutrophils). This can become life threatening in a matter of hours if not treated. Don't "wait until morning". Best wishes to you and your uncle. He's lucky ha has you for support. Bridget O