Susan L

Hi. I have written a script for a PSA (public service announcement) that will be produced and recorded in Las Vegas (a production company has donated their resources to do this). I had asked for volunteers to fly to Las Vegas and be in the PSA on another board, and received a great response - 11 will be participating, BUT they are all women. That is not a bad thing but I am afraid that when I try to market this PSA to TV stations to play during Lung Cancer Awareness Month, they will see all women and think we are trying to go head-to-head with breast cancer, and will not want to run it because it won't be politically correct. If we have both men and women, I think it will be easier to get TV stations to air it. The last line of the PSA says "we are not actors, we are real people, and we have lung cancer", so I can't hire actors to keep this statement true. If you are a male, have lung cancer and would consider participating in this PSA, please let me know by replying to this post or by sending an email to me at shlaurents@gmail.com. There are speaking parts available for at least 3 or 4 men, plus at least 15-20 men will be viewed in the PSA and all will have one line in unison. The taping will be on Friday, September 19 in Las Vegas. Everyone that is participating is coming in on Thursday evening and leaving on Saturday (taping is scheduled to go from 1:00pm-5:00pm but may run longer). I can give you information regarding hotels, etc. in Las Vegas. Thank you very much. It will be a good time and you will get to meet some of your online friends in person. Susan

It's not an easy subject for family members to discuss. I filled out a document called "Caring Conversations". You can get the document at: http://www.practicalbioethics.org/cpb.aspx?pgID=886. In it, you can describe your wishes for your care, financial info, burials, etc. It's a hard document to fill out when you are in our condition (very depressing), but it has all of the information for your loved ones so there is no mistake about your wishes. I haven't finished filling it out yet (it is very thought-provoking), but once I am finished, I will keep one at home and let my husband know where it is, give one to my primary care physician to put in my file, another one to my oncologist for my file, and one to a lawyer. That way all bases are covered. Susan L

Everytime I start feeling down about my condition, I tell myself "it is what it is". Once I say that I realize I can be depressed and not be happy, or I can have fun and be happy, knowing that either way I choose to feel won't change what it is. That phrase always makes me choose feeling happy so I get up and make myself do something fun (even if it just watching a funny TV show or taking a walk. Even cleaning the house makes me feel better because I'm doing SOMETHING. Susan L

Hi Linda. Yes we did. Hopefully we can call this home! Have a good day. Susan

Talk to your oncologist about hyrdoxyzine for the Neulasta bone pain. After my first Neulasta shot, I had unbearable bone pain, mostly in my legs. Someone had posted an article on another board about antihistimines for medicine-induced bone pain. I brought the article to my oncologist. Although he said it wasn't proven and wouldn't give me a prescription for it (it's an antihistimine), I had some left over for hives and tried it for my second Neulasta shot just last week. What a difference! I only took one pill (25mg) a night the day of chemo, the day of the shot, and the day after the shot, and not only did I have very minor bone pain, but the pill also helped me sleep each night where the steroids used to keep me awake. I have an appointment with my oncologist on Friday to get results of my first CT scan since treatment and I will definitely be telling him I took the pills against his advice and that they worked, so hopefully he won't be so closed minded with others. Good luck. Susan L

I received the same document and forwarded it to my oncologist at Johns Hopkins. This is exactly what she wrote: "This is NOT from Johns Hopkins. There are bits of truth in parts of it but by large there are just scare tactics in there. You should focus on continuing with chemotherapy, eating a good diet, exercising if you have the energy and allowing your family and friends to support you along the way. Those things will help." Hope this helps. Susan L

Hi Jan: Nice to meet you and congratulations on being cancer free! Susan L

I've bought 3 of them - 1 at tlc, 1 through Ebay (big mistake) and 1 through a wig store. How does anyone get used to wearing these things? I am having the worst time with them and keep ending up with a rash on my head! The one from the wig store was outrageously expensive (well over $1,500 but human hair) and it's the most annoying of all! Any hints for wearing these? I've used wig caps but they seem to be too tight on my head although my head measures a petite to average. I buy average caps but they are still too tight. Thanks. Susan L

Go have fun. I was diagnosed back in January and since then I've been on the go all of the time. We have to live life when we feel like it, and when we don't, it's okay to lay around and do nothing. How did you know to take Claritin for the Neulasta shot pain? The first time I had my Neulasta shot, after a day or so, my bone pain was so severe, I was in agony. This time, against my doctor's orders, I took hydroxyzine the day before and the day of chemo, the day of Neulasta and the day after Neulasta, and the pain was so much less severe. Although my oncologist (who is one of the best in my area) said it won't work, it sure did. I wish I would've known about that the first time! Susan L

I lost mine about 3 weeks into it - Taxol/Carboplatin/Avastin. Didn't come out all at once, just kind of thinned until I finally had it shaved because it looked so horrible. Susan L

Hi Teresa: Who is your dad's oncologist at Johns Hopkins? Good luck with the CT and Pet Scans. He (and your family) will be in my thoughts and prayers. Susan

Hi Neighbor: Good luck with your sister. I hope she progresses until she has no disease left. Where does she go for her treatments? I now go to Reston, but also had a consultation with Johns Hopkins, and both oncologists, locally and from Johns Hopkins, worked together to map out my treatment, which was comforting to me that they both agreed. Susan L

Thanks Rich - got it. I appreciate your help.

Hi Rich: You have gone through so much and you are still so positive. You are an inspiration. Thank you for the post. I am actually taking it pretty well and stay positive 99% of the time. How do you create the "journal" you have at the bottom of your post? I'd like to try to do the same. Thanks again. Good luck to you and you will be in my thoughts. Susan L

By reading your profile, you do sound exactly like me first. I had the same problems with Neulasta also. I didn't have to get the shot last time since I couldn't get the Taxol (same as you - reaction after three minutes), but I did have the shot today. I read somewhere where antihistimines, specifically hydroximine (or something like that) will help with bone pain and I happened to have some for some hives I had not too long ago, so I took one on Monday, yesterday, and I plan on taking one today and tomorrow (at bedtime) to see if that helps. I hope it does, because like you, last time the pain was unbearable! Thank you for posting. Your bio is very encouraging. I'll let you know how the CT scan goes and I hope you will keep me posted on your journey. Susan L