lilymadeline

Like the new photo! Are all the pooches yours?

Thank you for all your great information.

Thank you so much for all that information. I've decided not to get into any energy drinks and stick to smoothies. Nice of you to share all of that...Thanks again, Zoe

Lilymadeline, I just want to say I LOVE YOUR POSTS! You are such a warm, supportive, enthusiastic Whatnexter! You give so many of us a lot of help. Even though I'm 15.5 years from my diagnosis, I'm still very cancer-conscious and sometimes anxious about a recurrence or a brand-new cancer. I find this site comforting and enjoy responding to others. Anyway, just wanted to thank you. Hugs!

I Hi lilymadeline. I saw your post in response to a question about nausea. (I didn't respond because you said what I would have said - ginger). . .but, I also read that the Gleevex is giving you some difficulty. . .not sure how many times a day you have to take it, but, you may want to try taking it before bed and perhaps you'll sleep through it (?). just a thought. Was happy to read on another post you had another dancing weekend ! ! ! Stay well my friend : )

Hope everything goes well with your scan this week. Remember to visualize doctor telling you your scan is clear, positive thoughts : ) I'm having one in December as well.

Hi Lily. jojo2 here, just found liver, bone mets, after 3 1/2 years out of treatment. Had first chemo Fri, Eribulin. You give me hope. Thanks

Hi Lilymadeline, you mentioned a website breastmets.com but that isn't a valid website. Can you send me the url for the site you were thinking of? Thank you!

My name is Sarah Sunday, i would love to share some very touching stories in my life and how i overcame it, please kindly contact me via my private email which is sundaysarah8 at gmail dot com.

Thank you for getting back to me, I am seeing a pain Dr. We are working on pain meds, still not helping. Next week I have a lot of Dr. App. Pet scan, my oncologist , pt, radiation and my pain Dr. After that I should know what's going on, if the cancer has spred more. I also have trunkle lymphadema don't mind my spelling chemo brain lol. I won't go on and on right now, will let you know about my test. I will say a prayer for us, hugs back at you, xo

They just started me on Lexapro 5mg for anxiety. Does it take long for the start up side effects to go away?

I have been on oral chemo for over a year now, some side effects the have pills for that. I am up to about 13 pills in the morning and 8 at night. I am felling good except for the pain.

I took tamoxifen for 4yrs stopped working for me so now I am on Letrozole it a newer drug than tamoxifen and works great.

thanks verymuch

You go get a manicure and no biting those nails ! ! ! LOL
Just wanted to wish you good luck this morning. . .really hope the targeted therapy makes a difference for you ! Karen : )

Lilymadeline - the note you sent me helped to explain the situation, even though it is a different type of cancer. Maybe my husband's doctor has heard requests like mine countless times and spent far too many hours getting no where with the insurance company. If so, we may have to consider trying to get a full body PET scan and full body Ct scan with out of pocket funds, if we can afford it.

Sorry to hear daughter is battling a monster at such an early age. Youth though, is in her favor! Best of luck to her. Blessings!

Hi L. My daughter, 18 years old, has colon cancer with mets. Diagnosed about one year and 1/2 ago. I am trying to help my daughter but she is very weak due to the last chemo infusion. Your thread was so interesting to read. You seem quite knowledgeable about cancer. I was wondering whether you tried alternative treatments, nutrition, vitamins, or other means, and which are those...?

Hi lilymadeline
what percent generic Rogaine did you use 2 percent or 5 percent?

w/SSP: I see your an oncologist, and am happy to see you are so involved for many reasons. It's good for the Touch Stone/Sound Board questions and concerns, being you are figuratively and literally on all our team.

It's uncomfortable when getting that gut feeling, and knee jerking automatic desire to respond to bad news after every visit, and it's hard to hold back saying "Well now's a fine time to catch it...why couldn't you see that before...(thinking was this the guy or gal I should have trusted to go to?). It wouldn't do to just blurt out "Well now's a fine tell me this ______." (Who wants to get on their bad side?) If I bash one professional who happens to be in the same one you hold dual allegiances to, I'm sure you'll understand.

The process, tips, tricks, tactics and warning signs never come too early. Neither does correct bad diagnosis. The good ones are always on time. Being able to browse, discover and exchange important keys and clues to what's already been learned and experienced by others, is priceless.

I imagine it has, does, and will continue to shed earlier light on things that may lurk in the shadows on paths of many people. How many more professionals are directly tied to, and bound with like kindred spirits, by there skilled medical professions? Whoever and Wherever you are, Thank you!! Signed as an Unwilling Rookie that's here to play for all I'm worth.

Be well, me and my SSP.

Hi lilymadeline
What is MSM?

Thank you for your kind words about my possible surgery.
I hope you are doing well. Elaine

Hi lilymadeline! Hope you had a fun weekend celebrating the 4th of July : ) I saw on a couple of your recent postings that you had some additional genetic testing done that offered specific cancer cell information that allows for a more targeted treatement. Was the test you had called the Eurofins Oncopanel 240 ? ? ?

Oh Dear Lilymadeline: you are one of my favourite WN's! Thank you for your kind words and empathy. I am so sad to hear of your bone pain. I would take some of it from you if I could. I take Oxycodone 30 mg every 3 hours. I would be out of my mind if it weren't for my pain meds. To the best of my knowledge, I don't have any mets.
I see the Director of High-Risk Skin Cancer, Dr Chrysalyne D. Schmults at Dana-Farber in Boston. People come from all over the WORLD to have her look at them. How blessed I am to be able to be her patient. Thank you God. I am going to call her tomorrow.
Thank you for sharing. Don't be afraid to up your pain meds or add a breakthrough in there if you need it. Much love and Aloha:
Katie

Thank you for the comments to my post. You have given me a new hope.

I'm sorry I did not explain myself well, I had internal radiation and this is the burning in the pelvic and back passage area.

Lily, as for that oncologist, who I'll go back to next week is the one I left as I went to CC of America in Chicago. I get this feeling that returning to a Dr. who didn't exactly seem thrilled about me going that...some underlying thoughts were there that I'd rather not venture to explain. But after being sent to a Doctor to manager pain, by him, and seeing a Doctor who told me I need to a have a pain pump or something installed to regulate pain medicine...well that guy just sent me through the roof. I went to CCA and they immediately discovered, xrayed and collaborated and then arranged for a Doctor to come in and do surgery to put a rod in the place where I was experiencing pain. The reason why, was the fan type radiation over and around my hip...was too strong/too/wide and invasive and not as specific as to target the core problem, without causing damage. After the surgery, laid up for 4 weeks from work. Looking back at this oncologist who sent me to this guy, I may get another one to get me a social worker or navigator like you say. I'd love to know that I have complete cooperation and collaboration between CCA Chic, and locally here, by Doctors. It doesn't feel good to think someone like a professionally skilled Dr. may hold some resentment. I actually had to stop the radiation on that hip, since it was so painful, and thank God I did. My Sis ended up contacting CCA after she saw the same commercial we did many times, though she was the one that called and had them call me. They couldn't have more on the ball, before, during and even after my initial evaluation...that turned into "An Apparently Urgently needed surgery. Sorry to rant, but I figured I'd get that part out of me anyway. Be well.

I was pretty sure it said $20. The first survey said $25 and I didn't qualify. But then this other one came along, and I could have sworn it said $20...but then...I STILL have chemo brain!

Thank you so much. I just got on this site hours ago, and didn't expect much activity. You folks are not only quick you are kind and take the time to provide thoughtful and useful responses and tips. Thanks Again.

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