HearMeRoar

Thank you!

Congratulations on your new hair product friends. You're about 4 weeks further in your treatments than I am. I would love to see before and after product pictures. I feel like mine is taking FOREVER to grow back.

Wore mine a handful of times - mostly to show close friends/family who all *loved* it. Except for my DIL - whom I love. Since my 40s I've had painfully thin/sheer hair for which no doctor could really recommend anything that I was willing to try.
I guess with me it's what you see is what you get. My hair is now grown back, a little curlier, possibly a little thinner - but I don't spend time studying it in the mirror.

I have the advantage of being retired, so I don't have to fit in to a workplace. I used a turban indoors for "dressy" in the winter, hats outside (we have winter where I live) but mostly I used cotton bandanas from TLC. I didn't have the self-confidence/courage to go bald. Besides that would freak out everyone where I live. (Average age of the people in my age-restricted community is probably 80. Yes, I'm an OP)

When I did work, it was in a lab setting (at the NIH) and I fit in perfectly well with the young post-docs who generally were brilliant, charming, and underfunded in the wardrobe department. I'll be nice and won't say *slobs*. *Casual* is more tactful.

I live in an area where many women keep their heads covered for religious reasons - many religious Jewish and Muslim women. And I have seen some magazine-worthy young women who wore their scarves very beautifully. Outstandingly so. There are many videos on you tube to look at. I looked at some muslim headscarf sites, which seemed to be more high fashioned than jewish orthodox sites. (e.g. special jewelled pins for hijabs). But you probably don't have as much time to spend on line as I do.

With all my words here, I think Clyde said it best. I liked his response. Too bad there's no love button.

Anyway, be yourself. I think that's as good a confidence builder as anything..

What a wonderful thing you did by donating a "victory" bell...many will experience that moment of utter joy when that bell clangs for years to come...good job!

Hello, This could be a picture of my nails right now. I just finished Taxol and mine also hurt when hit. It was suggested to keep them filed and very short to prevent bending and tearing. The nails are also ridged and paper thin. So far the nails have not come off and hopefully they will eventually grow back. New chemo begins tomorrow so we shall see.

The bell idea is such a great idea. I rang the bell at my last radiation treatment & it felt so good to signify the end of treatment.
Live Strong !!! )

Hi what kind of greens?
Thank you

I'm sooo sorry about your anxiety. To keep my anxiety done I take effexor 37.5 . Most days I only take a half, it really works. Something else take helps is tapping pressure point areas, it is very calming. KIM )

Way to go!!!!

Sorry to hear the cut the gut comment!!! I guess this mean somewhat of a tummy tuck at LEAST???

You look fantastic! No one would ever know you were wearing a wig, it looks so natural!

I went to your blog, and gotta say I love it!

HearMeRoar,
I thought you might find this interesting. It is hot off my practice update online oncology journal, enjoy...Carm

story of the week

ResearchJune 06, 2013

Score One for Nivolumab/Ipilimumab Combo in Advanced Melanoma

N. Engl. J. Med. 2013 Jun 02;[EPub Ahead of Print], JD Wolchok, H Kluger, MK Callahan, MA Postow, NA Rizvi, AM Lesokhin, NH Segal, CE Ariyan, R-A Gordon, K Reed, MM Burke, A Caldwell, SA Kronenberg, BU Agunwamba, X Zhang, I Lowy, HD Inzunza, WFeely, CE Horak, Q Hong, AJ Korman, JM Wigginton, A Gupta, M Sznol







TAKE-HOME MESSAGE


Researchers combined nivolumab plus ipilimumab in patients with advanced melanoma. Results demonstrated remarkable response rates, along with a manageable safety profile.




Commentary by





LeeS.Schwartzberg, MD, FACP


Immunotherapeutic approaches to cancer continue to excite oncologists, and with good reason. A presentation by Jedd Wolchok of Memorial Sloan-Kettering Cancer Center presented at the ASCO 2013 meeting, and published simultaneously in The New England Journal of Medicine, focused on the combination of ipilimumab, an FDA-approved CTLA-4 antagonist, and nivolumab, an investigational PD-1 inhibitor, for the treatment of patients with advanced melanoma. Both drugs affect the immune system by reducing the so-called "brake mechanism" by interfering with T-cell inhibitory checkpoints, which normally prevent innate immunosurveillance of cancer cells. By targeting two different points along this pathway, preclinical studies had demonstrated additive benefits over one drug alone.

In this phase I study, the results were dramatic: a 40% response rate, clinical activity in 60% of patients, many complete/near complete responses, and very long duration of response. The concurrent administration of these agents appeared to be superior to a sequential approach, and the maximal tolerated dose of the combination was established. Given the fact that other PD-1 antibodies have also shown impressive activity, as seen with lambrolizumab in an article published in the same issue of NEJM, and the promising results of this approach in common cancers such as non–small cell lung cancer, we appear to be entering an era when the ultimate personalized therapy—a patient's own uniquely specific immune system—provides tangible, long-lasting benefit against cancer.


--------------------------------------------------------------------------------


SUMMARY




PracticeUpdate Editorial Team

Background: In patients with melanoma, ipilimumab (an antibody against cytotoxic T-lymphocyte-associated antigen 4 [CTLA-4]) prolongs overall survival, and nivolumab (an antibody against the programmed death 1 [PD-1] receptor) produced durable tumor regression in a phase 1 trial. On the basis of their distinct immunologic mechanisms of action and supportive preclinical data, we conducted a phase 1 trial of nivolumab combined with ipilimumab in patients with advanced melanoma.

Methods: We administered intravenous doses of nivolumab and ipilimumab in patients every 3 weeks for 4 doses, followed by nivolumab alone every 3 weeks for 4 doses (concurrent regimen). The combined treatment was subsequently administered every 12 weeks for up to 8 doses. In a sequenced regimen, patients previously treated with ipilimumab received nivolumab every 2 weeks for up to 48 doses.

Results: A total of 53 patients received concurrent therapy with nivolumab and ipilimumab, and 33 received sequenced treatment. The objective-response rate (according to modified World Health Organization criteria) for all patients in the concurrent-regimen group was 40%. Evidence of clinical activity (conventional, unconfirmed, or immune-related response or stable disease for ≥24 weeks) was observed in 65% of patients. At the maximum doses that were associated with an acceptable level of adverse events (nivolumab at a dose of 1 mg per kilogram of body weight and ipilimumab at a dose of 3 mg per kilogram), 53% of patients had an objective response, all with tumor reduction of 80% or more. Grade 3 or 4 adverse events related to therapy occurred in 53% of patients in the concurrent-regimen group but were qualitatively similar to previous experience with monotherapy and were generally reversible. Among patients in the sequenced-regimen group, 18% had grade 3 or 4 adverse events related to therapy and the objective-response rate was 20%.

Conclusions: Concurrent therapy with nivolumab and ipilimumab had a manageable safety profile and provided clinical activity that appears to be distinct from that in published data on monotherapy, with rapid and deep tumor regression in a substantial proportion of patients.

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The New England Journal of Medicine

Hi!!....
I have 2 sisters and 1 brother I am the oldest. Same thing in my case I just got done with my chemo. and my baby sister (26) called said she found a lump went had a biopsy and came back cancer (she lives in NC I live in OH) So of course she told doctors about me so they whipped her right through everything it seemed like she also tested positive for the BRCA1 gene she of course asked me tons of questions and I gave her all the info, advise I could think of that applied to me. She went in and also had the Bi-lateral Mastectomy like me and of course for precautionary purposes had to do the chemo. (which of course has hated). We took the same drugs but I did mine in 6months to where she is doing hers in 4 she is now on the Taxol and sits there 5 hours!!. She has 2 treatments left (very exciting). I am going to see my oncologist Monday 20th (checkup) and she will be seeing her doctor soon also to decide on having ovaries removed which we are both uncertain on (but will probaby still do) neither one of us have kids so it's a bit unnerving for us right now. :-( It's just so crazy how how got cancer then she did. Talk about parents aging with all the worries!. My other sister does have 4 kids was tested positive also for the BRCA1 and is looking into doing the preventative surgeries.
Call this cancer these days it's like the common cold anymore! before never hardly heard of it or about it now!! geesh....
Please feel free any questions or just chat I'm here. :-) hugs!.

Hello. Before I post this as a question to the network, I'd like to know if it's OK to quote you from your recent question, If you'd rather not, I can certainly leave your name and the quote. BTW I applaud your attitude - you are fantastic! Here's what intend to post (or something similar). Thank you. -jad

This quote is from HearMeRoar " I really and truly feel like I'm not afraid and I'm gonna be here a long time and this is just a little bump in my road. I don't want to LIVE in cancer land beyond my treatment."
I just attended my second support group meeting. I guess it was good. Facilitator was fine, and the people seemed honest and sincere about trying to help each other out. Things discussed were side effects and management, attitude, family cooperation as caregivers, end-stage feelings, recurrence - just about everything, actually - and not necessarily in the same order as I present here. There was no real agenda - just free-range discussion.

Personally, I liked the group, and contributed. Yet at the same time felt a little apart from it because I am busy living my own [new]normal life and feel well and energetic. It was not depressing - yet I didn't feel part of it. Should I keep going? Opionions/comments, your experiences, please.

Please explain further about shower scarves!! Thanks!

Your dressing up for chemo reminds me of MY routine--wear my goofiest costume wig (I have about 8) to chemo to get other patients to smile...or sometimes even laugh! It also made me feel in control and the nurses got a kick out of it, too. (BTW, I'm 60 and act like I'm about 12, most of the time!)

Hi, HearMeRoar. I saw your response to GiggleBunny99 where you said you are doing well after two treatments. I just wanted to say Yeah and so happy to hear that. : )

I am in St. Louis MO, so we're pretty close. We go to your Eckerts every fall for apples!

It's a beautiful sunny day here in MN and I was thinking about you. Hope all is going well with you this morning.

Hope your having a better day! Let the Big C (Christ) take care of your little c (cancer)! This is a journey none of us choose, but we can make the choice to enjoy the ride!

OMG I am so sorry you had to go through that, Hope your recovery is so much better. Sending (((((HUGS))))).

I will get the name of that cold spray for you. You will like it much better than the cream.

HMR- so sorry to read your port procedure was so awful. It makes me so angry that you had to NEEDLESSLY suffer. What a jerk of a surgeon. Hope your recovery is much smoother than the procedure. Positive thoughts your way...

I know tomorrow is a hard day for you. I have been thru it too. I have a son who is the sunshine of my life and a husband that loves me. I want you to know that I am praying for you and your loved ones. The road ahead is not easy but it will pass. I had my surgery, mastectomy and 44 lymph nodes removed May 2012 and then weekly sessions of chemo and herceptin. I am now only on herceptin every three weeks. It was a challenge and struggle but it passed, I am now back to my old self. My hair is starting to grow, I reopened my business, etc.
You are strong and very young. You are going to win!!!! Be positive. It is hard but who said life was easy. We meet obstacles every day and this is only a big one but you will beat this dam disease. All my best to you. Feel free to reach out to me if I can be of support or help. Marisa msreje@hotmail.com.

Just checking in to see how you're doing today. Hanging in there? You're in my thoughts and prayers.

Hi friend, I am just checking to make sure we don't have a problem with our system.

did you delete the post you made earlier today?

HMR, I have a 8 year old and 12 year old, so I know how difficult that conversation was. But know that our children are strong, amazing and loving. I am still amazed at how well my boys have made it though this journey with me. I tried to keep everything as normal as possible for them. I even worked though chemo. They have a great perspective on life and know what is most important. My youngest

Hey there. How are you doing today? I hope it's a better day than yesterday.

I'm thinking of you today. You have what it takes to get through this. Summon that courage and strength that's deep inside; get past those fears. You are young, otherwise healthy, and have so much to live for. COURAGE and STRENGTH--it's there, I promise you!