Ladies in their 30s?
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I went through a small insomnia period. There is an OTC called Simply Sleep. It is like Tylenol PM without the Tylenol. Very safe to use and non addictive. I also cut caffeine totally during that time. It helped, and after a while I was so tired from chemo that I was asleep before my head hit the pillow. Are you napping any in the day?
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Great news on the echo kingcour! I am all about hiding mode....great way to put it.
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I just wanted to vent a little to you ladies. I went to the dr for my pre chemo blood work the other day. There's always a different nurse doing it everytime I go in. This time I knew the nurse. She is the head nurse of my sons school district. She knew who I was because my son has type 1 diabetes and she helped to teach his school nurse how to monitor him while at school. After taking my blood she asked me how I was doing and we started talking a little. Then she asked me what I was going to do about my son. I said what do you mean? Then she says who am I going to have raise him! I felt like she was telling me I was dying very soon! I have been dealing with this stage IV diagnoses fine until this! Now I am just in pieces!
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Tammylynn - So sorry to hear that you had to deal with someone who was that rude and insensitive. That should really be reported so that she can at least get some training on what not to say. I met multiple women this past weekend at LBBC mets conference that are thriving and proving the stats wrong so please don't let one person w/o a clue depress you!
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HEY!!
I'm 33. Was diagnosed at 32 and looking forward to my 34th in July.
I'm so glad you started this, but I'm going to have to read up and get caught up on all of you.
Right now, I'm dealing with stage IV, brain met. Had SRS in Oct. 2012. They don't know if I have necrosis or progression. Wait and see.
I'm going off steroids right now, because they are making me crazy.
Nice to meet all of you and chat soon.
Much love and strength to you from me. Jilly
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Nbnotes, thank you! I'm feeling better. I was just shocked to be asked that because I can't afford to think about not winning this fight! I just finished chemo round 4! Now I have to learn about tumor markers. My dr said my initial tumor marker was 69 and after 2 rounds of chemo it was at 48. I've had two rounds since then so it should be even lower now, right? I don't know much about tumor markers, so if anyone has any insight for me that would be fantastic!
Hi Jilly!0 -
dearjilly - Welcome, but sorry that you have to join us!
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Tammylynn - Which tumor marker was it ? CA27-29 or CEA? My MO tells me that the tumor markers are an indicator but not an exact representation so anything going down is good, but she also warned me that the cells dying off are also represented in that number so sometimes you see spikes even higher or not as low as you'd like. I put my numbers for CA27-29 from right below chemo to now below so that you can see an example of what someone elses have done to maybe relieve your mind a bit. My CEA has had a pretty similar pattern.
9/25 - 132; 10/6 142.8; 11/26 - 75.6; 1/15 - 70.1; 2/4 - 66.9; 3/15 - 40.9
I had that spike after my first treatment, and I didn't love that it seemed to slow down between treatments 3-6. The next big jump down is after my hysterectomy & starting arimidex. The scans throughout have shown consistent decrease though which is the main thing. I go for markers and scans tomorrow, my first since 1/30, so hoping that trend continues. Be happy with your decrease -- It is a good sign!
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Hi new friends, ya.....poopy to be here, but I am very happy to meet you.
Jilly
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Sending positive thoughts your way nancy for good numbers and scans!
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Hi just diagnosed with stageIV will start chemo this Friday may 3rd. I am 35 and have 5 little girls and no one in my family has ever had any type of cancer so kinda feel alone, worried but ready to kick some butt!
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Tammy,
We have a saying here " not the ill, but the one who's time is up passes away". So true. Dx'ed exactly a year ago, I've had my share of many pity talks & looks so far, trust me! Guess what? Just 3 weeks ago, my ex-boss died in his sleep from gas poisioning & was found 3 days later. He was perfectly happy & healty.. Just one day at a time, enjoy each minute with your loved ones.
Everyone else, welcome on board, sadly..
I actually feel more in peace with my situation now that I know I might actually die any minute. So many don't know that & pass away like that. I feel lucky to cherish each moment I've got more than I ever did before dx. Promised myself & already announced my first will to the entire family not to push DS to hard with school, sports, anything.. I trust life will let him be & live as he is supposed to anyway. DH agrees with me. Me? I studied too hard to attend the best schools available here, worked at the most reputable companies of the world before establishing my own, only to retire on disability at 38. Would have enjoyed life much more, as I try to do now, had I known better. My only consolation is I never let a babysitter home, grew my baby myself with both moms helping. Feels so good not to have missed many moments with my DS.
hugs, Ebru
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Hey ladies. Have not posted in a while. Just wanted to say hi to everyone and wish you all well.
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I am 33. I was diagnosed in August of 2012. 8 months of chemo...still fighting hard!
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Hi everyone!
Let's get this thread going strong again. How about a check-in? J1e1n1a, I was thinking about you the other day, so I'm glad you popped in to say Hi! Anyone heard from Texasrose? Nbnotes - Hip, hip hooray for the wonderful news!!! Ebru, so right to enjoy every minute! It's hard to remember not to let the fear control our lives sometimes! Hello aic and kingcour, how are you doing?
Cullensm1 - I'm sorry you had to join us
I was diagnosed as stage IV from the get go with liver mets at the end of July (2012). Are you triple negative, is that why 8 months of chemo? I did chemo for 4 months (dose dense) and then radiation and finally a hysterectomy.5girlsmama - sorry you have to join this horrible club. What kind of chemo will you be on? While I found chemo hard, it was actually much better than I thought it was going to be - don't believe what you see in the movies. They have come a long way managing side effects these days. The hardest part was taking caring of the kiddos while on chemo! Hugs!!
Tammylynn - I can't believe that nurse said that to you. Like we don't have those horrible thoughts creep in on our own, no need to have an acquaintance throw them in your face. Horribly thoughtless on her point.
Dearjilly - hello! When will you know about your brain mets? Do you get scanned again? I hope it's necrosis!
I think that is a hello to everyone on this page. I couldn't go back any further, so if I missed you, I'm sorry! Please check in and let us know how you are doing!!
I'm doing really well right now. My hysterectomy was in March and I've had a lot fewer side effects than I was dreading. I'm currently just on Tamoxifen. My last PET was in March and I was NED. I won't have another PET until June. I'm getting blood work done once a month. April's tumor markers were at 14, so still within normal range - whew!!!
I have a low grade headache almost everyday, but I'm wondering if it's the tamoxifen. I also have had back pain since starting the tamoxifen. Has anyone had those side effects with tamox? Hopefully it's all drug related and not mets. You all can relate to that fear!!
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5girlsmama- I am with you! I am the mom of 4 and was diagnosed at age 37 in April of 2012. Keep the attitude that you are going to kick this, and you will! I have had dramatic success with chemo.
Doing well so far! I go for my first herceptin/ perjeta with no chemo this Thursday. So glad to have that behind me for now! Having kids kept me busy, and I think that helped a great deal!
Best wishes to all for positive results!0 -
Brandall, thanks for responding to my pm! I will know more a week from Friday if a hysterectomy is in my near future. I am so glad you are doing so well. Kingcour, I have loved just p and h. I am only tired sometimes the evening of treatment and that is probably from the benedryl. Ebru, it is always good to see your posts. So glad we have this thread going. Much love to everyone.
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I've been keeping up with everyone's posts here, just haven't replied and I do apologize! I try and spend some "relax time" on the couch with my laptop, but that doesn't always happen. I hope everyone is well and I wish you all NED!!
I'm currently on my week off of chemo, as May 8th will be my first CT since my PET scan in February. Anxiety is slowly creeping in the closer it gets.
My MO is extremely surprised at how well my body is handling the tx. She tells me that I'm on a very aggressive cocktail and it kinda worries me that the doctor's are so shocked. The only SE thus far is my hair slowly falling out. I have thick hair to begin with and will say I've probably lost 50% of what I have. I will start round 4 of chemo May 9th, with Taxol also on day 8. MO has me scheduled for AT LEAST a year of chemo, maybe longer. All of this going on and I am still working full time! I hope my body will be able to handle it as long as possible...
Anywho enough about me, how is everyone else doing?!
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I have done so much chemo because we have not been able to shrink the tumors enough to get me to tamoxifen. I am ER+, no radiation planned. I will be going to The Unviersity of California SanFrancisco in two weeks to determine the next steps.
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Brandall, Thanks for being so sweet and thoughtful.
Your NED news is perfect! YES! I love it. Tamoxifen only gave me hotflashes. I don't recall it affecting me in other ways, but it could!? Who knows what med is giving me this ache and that. lol I feel like a walking pharmacy.
I am still waiting...la la laaaaaa.....
Waiting for my next MRI. I have it booked, but not until May 14th, but trying to get in earlier.
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Hey there. I just turned 30 - Sunday - I was diagnosed at 29. I have stage 2. I have a 8 and 6 year old. No family history..just out of the blue. Please follow my journey.
BlondetoBald.blogspot.com
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Dear BlondetoBald, I hate the one to post this, because I am always more on the welcoming side of the Stage 4 ONLY thread to sisters from other stages, so visited your blog with the best intentions, feeling great empathy for you as another 30-something mom. I felt so downhearted on my account, reading the note "soon-to-be-survivor" note right at the top of your blog. Sadly, none of the ladies on this very thread can say that any more. We are a group trying to share & support each other in some ways sisters from other BC stages differ (& I hope never have to face ours anytime in their lives), as much as we do try to relate to your feelings, worries & hopes. Maybe found this thread by mistake? There is already a special forum for stage 2'ers & another for young ladies (sorry can't remember it's name) maybe check those out?
Please don't get me wrong, I love connecting with everyone, but seeing your blog made me realise once again of my reality which does not feel good
But that's me of course. hugs, Ebru
Edit: grammar, ughhh the chemobrain
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Brandall- I did get mild headaches the first few months on tamoxifen, which my MO said was due to the tamoxifen. to be on the safe side, she sent me to a neurologist and had brain imaging. The headaches eventually went away after several months. I only recently switched from Tamoxifen because I have now started Zoladex. Hopefully yours go away soon.
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Aic, Thanx! I love the boards, the bonding we have.
Brandall, I was on Tamox for 4 months, had backaches & headaches as well as severe hot/cold flashes, though I was also on Lupron. Since I have bone mets, I preferred to believe it was the healing. Your body is trying to adjust all those hormonal procedures & meds, I'm positive it's nothing serious. You're NED, ENJOY!
CRJT, I was on tamox & lupron (similar to zoladex) the same time, quit both to go back on chemo at the same time. Interesting to read you receive them as different therapies, we learn something new each day! Hope it works long for you.
Jill, thumbs up for the coming up scans. Hope to celebrate yours as we did Nancy's!
Jena, how's Arimidex working for you so far? I had to quit Femara after a short while as TM2s skyrocketed, but hope to go back to hormonals after a while.
Kingcour, great news, enjoy
.Bethany, so glad you can cope with chemo SE's well so far
Hope the trend goes just like that for looong!Cullensm1, we are TM buddies, I guess as I am also trying to keep get them back down to earth from the moon with Xeloda myself. I'm positive UCSF have some goodies to kick those TM's back to their senses soon!
Mine are scheduled for next week. I hope to give DH some good news after a year of this rollercoaster (which he hated all his life) for his birthday. Thumbs up for that!
hugs, Ebru
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Stagefree- I was told that zoladex puts me into a menopausal state and thus the switch from tamoxifen to an AI.
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Ebru, I understand what you wrote. I get it! However, I consider us ALL survivors, cuz we're surviving, aren't we!?!?!
Much love and hugs to you. Glad to meet you. xoxo Jill
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I too was on tamoxifen and Zoladex together. That is, until I had my ovaries out and then it was just tamoxifen. As I understand it, Zoladex isn't an AI, but this could just be a semantics thing. Interesting...
Ebru, you have a gift for writing things in such a nice way.
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Hi Jill,
Surviving one day at a time yes, but as the name of this specific boards stage 4 & MBC ONLY indicates, ours is a bit different than the gals from other stages. We are surviving to live each day with the best QOL possible, rather than being considered medically "cured" at some point and get free of all treatment, as gals with lower stages of BC do to have a long survival chance to die from something else. In our case it is much more probable that we will die of MBC / STAGE 4 caused reasons. Wish it weren't so, but we need treatment for life for survival. It may at times be a fragile issue (as some of us have witnessed more than once on the boards before). I just wanted to draw BlondtoBald's attention to this distinction. She is new to the boards & I wouldn't want her be misunderstood in any way. I would have loved to follow her blog, had I been a stage 0,1,2 even maybe 3 gal, but considering my own issues at this very stage, I felt it too much added to my plate. And wanted to inform her why I could no longer follow her blog. As I said, that's just me. Also said right at the start I hated to be the one to say it, not wanting this to become a no-end discussion (or rather argument) here, as have been many times before. I thought of her rather than myself doing it, as positively as I could
. hugs & love, Ebru
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4myangels, thanks
.hugs, Ebru
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stagefree and 4myangels- sorry for the confusion of the post. you are right...zoladex is not an AI. I meant that being on Zoladex would allow me to switch from Tamoxifen to an AI. Because I was found to have a bone met after about a year on Tamox, my MO and treatment team recommended switching me from Tamox to an AI. I could not switch to an AI while I was still premenopausal; thus, they began me on Zoladex to suppress my ovaries (until I have them removed) so that I could be on an AI instead.
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