sunnyside

Ned, I elected not to automatically do Neulasta after my first Alimta on 12/29/08 and my absolute neutrophil count a week later was 900 so I capitulated and got the Neulasta with the second one. I would certainly give it a shot without. I've unfortunately had GERD and mild nausea and dysgeusia (bad taste in mouth) with the Alimta. I hope it's not a problem for you and you get to keep your recently recovered happy GI tract. I also just got over what appears to have been a respiratory virus that kept me in bed with temps over 102 for six days straight. First time in this whole process I've actually felt sick! Anyway, good luck to both of us with the Alimta.

Yeah, I had eight cycles. Fell out two weeks after 1st cycle to the point that I had it shaved. Stayed thin enough that I occasionally shaved through treatment. Started seriously growing back about two months after I finished (last cycle 8/12/08). I just had my first trim last week!

Tova, I've gained about 15 pounds since I was diagnosed in March. A lot of mine has been like Judy said, eating to keep nausea at bay. It is also very difficult for me - most of my clothes don't fit and I feel like anyone with incurable lung cancer and no room in the budget shouldn't be going out and buying new clothes. I also tell myself that it's stupid to worry about it - if the cancer were winning I'd be losing weight so I try to remember that those pounds mean I'm still keeping the cancer in check. The other thing you might try is talking to your mom's doctor about an alternative to Prozac. Prozac is every non psych doctor's knee jerk choice for depression, but there are some out there that have less effect on appetite. One I like is Wellbutrin. Just a thought but anything to help her stay in the saddle and fighting.

Tova, That cocktail was my first line treatment from 3/08 - 8/08. I don't know of anyone who doesn't lose their hair with the Taxol. It happens really quickly right about 2 weeks after the first treatment. I didn't bother with wigs (I got two but didn't use them). I mostly just went bald - sometimes wore scarves. The Taxol also cause muscle and bone aches for me from day 3-6 after chemo. It resulted in ~40% reduction in all visible tumors for me. Good luck to your mom and have a great visit to Jamaica later this year.

Hi, Nurit. I was diagnosed the same time as your mom. I had 8 cycles of Carbo/Taxol/Avastin with about a 40% response then progressed on Alimta, had radiation therapy for painful lesions in my spine and had my first Alimta last Monday. Had to have Neupogen today for a low absolute neutrophil count but I'm still at work, still helping the kids with their homework and didn't feel nearly as awful during the days after the Alimta as I did after Carbo/Taxol/Avastin. I hope your mother tolerates it as well.

Sandra, I haven't been on this board for very long and I don't post too much, but I have very special feelings for you because we seem to be in pretty much the same place with our cancer and treatment. Many positive thoughts are coming your way from me.

Hi, Jenn, I'm so sorry that you and your family are having to deal with this. I, too, was diagnosed with stage IV NSCLC as a result of back pain. I have lesions in my thoracic and cervical spines. I have not had the severe pain your stepfather is having and I am very sorry that he is having such a tough time with that. I second Ned's recommendation that you check out cancergrace.org, but everything you have described sounds appropriate to me. What's called febrile neutropenia (fever when the chemotherapy has knocked out the white blood cells that fight bacterial infections) is the biggest risk of chemotherapy and they may give your stepfather some white blood cell boosters (Neulasta or Neupogen) after his next chemotherapy treatments. Sandra is right, surviving treatments is sometimes the biggest challenge of this whole deal. After radiation no one is going to want to think about surgery for quite a while because of the poor healing. Radiation is a great treatment for pain related to spinal lesions and I would expect him to get pain relief as the tumor responds to the radiation but there is also the inflammation that comes in response to the radiation injury so sometimes there's a wait involved. Good thoughts to all of you as you walk this road.

Sandra, I think you're rash sounds a lot like mine. The scalp was the worst, for me. There were two nights when it took me 3+ hours to go to sleep and I had to keep moving an ice pack around on my head. I skipped one day (day 23) and started back on a lower dose (100 mg/d on day 24). My rash was already starting to calm down by then (I started Minocycline on day 20) and I dropped the dose because of diarrhea and nausea. If you're not on one of the tetracycline class (tetracycline, doxycycline, minocycline) drugs that would be the thing to do - it started helping within a day or two for me. I went off it for while after dropping the dose but the rash started to flare so I'm back on the Minocycline. Targeted therapy my a#@.

Previously 6 feet, now 5' 11 1/2".

I was on 150 mg for 3 weeks and dropped to 100 mg because of uncontrollable diarrhea, nausea and fatigue. I feel great on 100 mg. I had started Minocycline for the rash and that dried it up a lot. I stopped that when I dropped the dose of Tarceva but restarted it 2 days ago because the rash started to blossom again.

Has your onc checked your platelets after the Gemzar? Low platelets could surely cause the nosebleeds and can be one of the side effects of Gemzar.

Did the nosebleeds just start recently? I have had a constant runny nose, sore throat, sinus congestion and occasional bloody noses but constant bloody discharge from my nose since I started Carbo/Taxol/Avastin in March. I know the Taxol causes a mucositis (inflammation of the mucous membranes like Patti said) and many other chemo agents do as well.

Coming up on six months! Wow, I didn't think I'd be able to say that. I think I'm about to switch from Carbo/Taxol/Avastin to Tarceva. Waiting for final word from oncologist.

My shoulder pain is worse than anything the cancer has thrown at me. Mine is AC joint arthritis and it has been injected 3 times - each time helps for a while so I'm going for #4 Thursday. I had ad MRI of my shoulder on top of a plain x-ray to verify that there were no mets in the area, because radiation would be the treatment for that. Causes of shoulder pain related cancer would be bone mets, pancoast tumor and disease around the left diaphragm, which refers to the left shoulder. That can either be pleural disease or abdominal cavity disease. I hope someone pays attention to your dad and gets his pain figured out.

There is a ridiculously long back story, but I am actually scheduled to be on the Rachael Ray Show (the ABC daily talk show) on September 5. The story involves my lung cancer in that Racheal and a designer she works with sometimes decided to make a wedding dress for a girl because I had planned to and then couldn't when I was diagnosed. They didn't really plan to coordinate with the Stand Up To Cancer thing but it's nice that it worked out that way.

LC type: Stage IV NSCLC (poorly differentiated adenocarcinoma) with mets to spine and liver Treatment: Carbo/Taxol/Avastin - about to do 8 cycle, no serious side effects, continued shrinkage of measurable tumor in liver, great energy, still working Living in the USA.

I know I agonized before agreeing to proceed with chemotherapy beyond 6 cycles. My quality of life and sense of wellbeing have been great from the outset, though, and it just makes sense to me to continue something that is working and not knocking me out in any significant way. I think it's just one more piece of evidence that statistics don't apply to individuals.

A colleague of mine, also a woman neversmoking physician who was just a year and a half older than I, died in the hospital Sunday morning. She was diagnosed with stage IV NSCLC in April, a month after I was. Her first chemo was exactly a month after my first chemo. She never responded to either of the regimens she was on and was never able to go back to work. She left 12 and 18 year old daughters. Anyone who would like to see her obituary can find it here: http://www.theday.com/re.aspx?re=c81e8280-c2cc-460b-a012-45222de72071

First, to your question about how close a doctor can get, I think I can speak to that as a doctor. Professional detachment is a very important quality of any physician. This doesn't mean a physician shouldn't be empathetic, but it is impossible to make good, objective decisions about someone you are emotionally close to. You will always under or overtreat because you are invested emotionally in what happens with that person. It's why no doctor worth their salt will treat themselves or their loved ones. Professional detachment is also the way that oncologists deal with death and dying. Even more than that, there is a lot to be said for the ability to help someone achieve a death with peace and dignity. When I was practicing internal medicine it was one of the more gratifying aspects of my practice. My oncologist has only been my oncologist for 5 months but so far I am very satisfied with our relationship. I am not the easiest patient in the world. Most times he caves to my requests - like the time that I asked him to go ahead with chemo even though I had a temp of 100.3 because I was sure it was a viral infection and not bacterial or the fact that he orders my liver function tests every 3 weeks just because I want him to. I couldn't argue him into going ahead with my chemo when my white count was low. He speaks to me in doctor jargon because that's my language, too, so I don't know how he does with other patients on that front. Early on he was happy to speak to an old friend of mine who is an oncologist where I trained and to my second opinion oncologist at Memorial Sloan Kettering - no ego issues there which is very important to me. Although he has given me any information I've asked for, I believe that patients do best when they become the world's #1 expert in their own disease and so I have spent a lot of time reading so most of what we discuss at this point is nuances - those things about which you might get 5 different opinions from 5 different oncologists. Overall I want my physician to be smart and well-trained, keeping up with the current science, not too impressed with him/herself and respectful enough to speak truth to me. I know from my own personal experience how little time they have with each patient and so I always have my questions lined up when I go in so he can zip right through them. I don't need emotional support from my doctor - that's what my family are for - but I don't want my doctor to be cold and unapproachable. I view my doctor as a business partner and expect that I'll be treated with the respect and competence typical of that sort of relationship. Regarding your situation about the dance around treatment decisions - that's always a tough one when the patient comes to a different conclusion than their doctor. The doctor has made a recommendation that they feel is the single best way to achieve the best results for the patient and having the patient decide on something else makes them nervous that that best result might not be achieved. There may also be ego issues involved. When I'm not on exactly the same page as my oncologist I make sure he understands my issues and priorities and ask him to work through WITH ME intellectually the points where we differ. We have always been able to come to a mutually agreeable place. Again, it's important to me that I feel like he is a partner to me in this process so I give him the same respect and deference I want for myself. Overall, it sounds like you've had a pretty good experience with both your doctor and the clinic and you've certainly gotten results that many of us are crossing our fingers and hoping for with all our hearts.

I have remained at work nonstop since diagnosis and through chemotherapy. I am the financial support of my family and have children still to educate. I do love my job (I am a physician) and the people I work with and I work in a specialty that doesn't give me much exposure to sick people! My employer has been very supportive and I get flexible scheduling and administrative time to cover the periods when I'm not feeling very well. I figure I could be home feeling like crap or be at work feeling like crap and at least diverted by other people's problems. I am not a workaholic and never work more than 40 hours a week but I find taking care of people, intellectual challenge and the reward of providing for my family to be very therapeutic for me.

I am new to this message board and wanted to introduce myself. My lung cancer history is in my signature. I am a physician and had to overcome some of my own prejudices from medical school and residency to get behind fighting this disease, but fighting I am. Feeling better than I expected and doing my best to stay positive.