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Ladies in their 30s?

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Comments

  • Sonata
    Sonata Member Posts: 78
    edited March 2013

    Ahh, Latte, thanks. I would have to agree with you. ;)

    I'll be fine. Got my focus back where it belongs -- I'm a MBC fighter, not a stroke patient. I've finally stopped worrying about if/when the next stroke might happen. Can't live that way. It's time to stare MBC in the face again and get back to living.

    Does that make sense to anyone but me? ;)

  • Marcijos
    Marcijos Member Posts: 4
    edited April 2013

    I've been on Gemzar/Carbo for 3 months now.. I have a PET scan in the morning to see how it's working.. Fingers crossed!!

  • texasrose361
    texasrose361 Member Posts: 895
    edited April 2013

    been off line for a little while my kids spilled water on my computer and Friday it so I'm using this ancient CPU that is slower than molasses!

    so I'm getting online with my phone which is almost as slow so I'm unable to catch up on my reading quite yet but just wanted to post a quick update I'm doing well!

  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited April 2013

    Just wanted to send you all a note to tell you guys that I think you are all amazing.  I have been reading your posts for a while.  I was diagnosed stage 2 at 37 9n 2010.  I was diagnosed as stage 4 in December 2012 with mets to my brain and liver.  I turned 40 in Feb so am not in the 30 club anymore.  I have 4 kids (10, 8, 5, and 2).  I read your posts and am inspired by your strength.  Just wanted to let you know. Hugs to all of you.

  • brandall
    brandall Member Posts: 97
    edited April 2013

    Hello to all the new ladies :)  Sorry you have to be here, but at least it is nice to have a place to chat with people who understand!  I don't think you have to be in your 30's to post in here.  I think it's turned into a thread where any young person with stage IV cancer can post :)

    Texasrose - I was just thinking about you this morning!  I'm so glad you posted and you are doing well!!!

  • robinwiggins79
    robinwiggins79 Member Posts: 1
    edited April 2013

    Hi Kasi, I just turned 34. I was diagnosed 4/25/12 at 33 and stage 4. I have lots of bony mets as well.

  • CJRT
    CJRT Member Posts: 221
    edited April 2013

    Question for anyone on Zoladex- Have you had problems with hot flashes or night sweats? I know this is a very minor complaint and I should be so lucky to complain about something like this, but I feel like I cannot get a good night's sleep, which is particularly frustrating when trying to rebound from my hip replacement surgery. I wake up at least a couple times a night drenched in a cold sweat. Anything that has helped alleviate this for anyone? Thank you, ladies!

  • Tammylynn
    Tammylynn Member Posts: 22
    edited April 2013

    Hey Ladies, I have been down for the past week. I think I have finally recovered from round two of chemo. This past week has been so hard! I have been so tired and my bone pain has been horrible. I had my first xgeva shot with this round of chemo. I'm hoping that's what caused the bone pain, since I only have to get it every four weeks. Did any of you have horrible pain from that shot? It seemed to hurt the most in my rib which is the bone that shows the most cancer. I go back for round 3 of chemo next Friday and I won't have the shot, so I'm hoping it's easier to recover from!

  • Latte
    Latte Member Posts: 141
    edited April 2013

    Hi tammylynn,

    Hope someone will answer about the Xgeva soon, but in the meantime, I had Zometa and also had terrible bone pain the first time, which was much less the second time, and I hope won't happen at all the third time (next week). I understand that the SEs can be similar, so I'm hoping for the same for you!

  • aic
    aic Member Posts: 37
    edited April 2013

    Fingers crossed marcijos! Glad to see you are OK texasrose! Hang in there tammylynn. It will get better.

  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited April 2013

    Here is a long shot-  I had bone pain when on A/C due to the meds to keep my white blood cell counts up. After I was done, I heard that Clairtin the allergy medicine really helped with bone pain.  Maybe you could try it and see if it helps. I am sure the meds mechanism are different, but it might be worth a try. I have been told that you must use the name brand Claritin D.  Again, I am not sure it will work for your chemo pain but I heard great stories about it for helping with bone pain after Neulasta.

  • EnglishMajor
    EnglishMajor Member Posts: 122
    edited April 2013

    Hi all

    I was Stage 4 at diagnosis three years ago at age 43.

    I do not think people grasp how many younger people are being diagnosed with metastatic breast cancer. JAMA recently featured a study looking at cancer registry data of young women dx'd with mets (at first diagnosis).

    I sense that in some quarters people will dismiss it.

    I volunteer with MBCN and wrote a blog on this topic: "A Wake Up Call for Young People with Metastatic Breast Cancer...And All of Us."

    I invite you to read it and consider commenting. We have to get our stories out there....

    Thanks

  • Tammylynn
    Tammylynn Member Posts: 22
    edited April 2013

    I think that's so important. January 2012 I went for a female check up and I was 38. I asked about a mammogram and my dr told me I didn't need to worry about that, we would start when I turned 40. February 2013 I found a lump and was told I was stage IV with bone mets. It kills me that I wasn't checked sooner!

  • Latte
    Latte Member Posts: 141
    edited April 2013

    Thanks englishmajor for a great article! I appreciated it (and left you a comment on the blog post too)

  • EnglishMajor
    EnglishMajor Member Posts: 122
    edited April 2013

    Thanks a "Latte"! Smile

  • ScaredNewMom
    ScaredNewMom Member Posts: 1
    edited April 2013

    Hello Ladies,

    I'm 31 and was diagnosed 6 months ago (Nov 2012).  I have a 10-month old baby boy who keeps my mind from whirling into dark places.

    Very upsetting to see so many women in their 30s.  Yesterday, I asked my surgeon how many mastectomies he's done to which he answered "about 1 a week" Frown

    Another forum member commented that it feels like the steering wheel has been ripped out of our hands and we've been tossed in the backseat - I couldn't agree more.  It really does feel like that.

    I look at pictures of myself when I was "healthy" and then look at the reflection in the mirror and it's like looking at a stranger.  I know chemo is necessary but it's sucking so much out of our bodies.

    Never thought I'd say this, but I look forward to ALL my hair coming back!!

    Thanks for reading my rant...lol.

  • stagefree
    stagefree Member Posts: 360
    edited April 2013

    Sonata: I can totally relate with you. Last year when first put on Xeloda with Taxotere, I had a severe tachycardiac attack & was hospitalised after which I had to quit Xeloda. Now that I feel better & AI's haven't really worked so far, I am back on Xeloda, by itself this time & it already halved my TM's in the first cycle. No heart attacks yet :)

    Marcijos: No news from the scans yet? Fingers crossed..

    Texasrose: I haven't been seeing you lately on the other threads. So here you are! Glad it's the computer & nothing else that's kept you away. 

    CJRT: I was on Lupron (similar to Zoladex) for 6 months. Yes the 24/7 hot/ cold flashes can be bothersome. I was on Tamox, then Femara which I took at night, after which the flashes severed in the following hour. I watched TV with my lovely ventilator on, to wait for it to pass. Went to bed really late, which helped. Also had a towel & extra t-shirts by my side ready, not to wake up totally when needed to change them. The flashes weren't as bad in time. The first 2-3 months were the worst. Also taking Xanax & Lexapro as prescribed by psych helped. Some use Effexor & say it really helps control the flashes. 

    Tammylynn: Xgeva is similar to Zometa. I've been on Zometa for a year now. The first couple of months my bones were soooo achy after each infusion (combined with the tx of course). That's what the painkillers (the big guns we are allowedWink) are for, ask for them. They help. I remember popping 3-4 Tramadols for the couple of days after the first few infusions. It gets better in time, as the bones start healing. Now, I get most days through without any painkillers, happily. I've read more than once on the threads sisters using Zyrtec the day before, the day of & the day after each Zometa infusion which helped with the SE's. Tried & saw it worked. But it gets better in time anyway. 

    EnglishMajor: Great article. Thanks!

    ScaredNewMom: You are still in shock. I'm happy you found BCO & these boards. You'll see the support & info will make things more tolerable in time. Now you have every right to rant!. There are so many chemos & quite a few let you keep your hair on. Never mind Dr.Google or some of your MO's comments. Things change in cancerland so fast, nobody, not even the docs know for sure what will happen when. I strongly suggest you read funny quotes from others to MBC patients, if you haven't already. And keep in mind each of us have our unique case. I hope you get to spend many more years with your baby.

    hugs, Ebru (38 years-old, mother of an 8-year-old)

  • Tammylynn
    Tammylynn Member Posts: 22
    edited April 2013

    Thanks Ebru! I go for round 3 of chemo tomorrow. I am glad I don't have to do the Xgeva shot this time. My dr said to start taking Claritn D today and it would help with the bone pain from the nuelasta shot. I'm hoping the pain is less this time, but I do have pain meds so either way I will get thru it. The last round just kicked my tail, so I'm not really looking forward to this one! I just keep telling myself it's working!

  • Tammylynn
    Tammylynn Member Posts: 22
    edited April 2013

    Scared new mom... I can't imagine going thru this with a 10 month old. My little one is 10 yrs old and it scares me to death that I won't be around to get him thru high school! I am so thankful for the ladies on this board that share their stories, they give me strength. I had a double mastectomy and I dealt with the scars really well, luckily I have a fantastic husband that only wants me healthy. So I thought I would deal with the hair loss the same way, but it was so much harder for me! I went to the American Cancer Society in my town and the ladies there are fantastic. Look for one in your town and give them a call. They will give you two free wigs. I went and spent an hour trying on wigs..lol. When your finished with them you can go and trade them for two more. I have a new identity every few weeks. It helps a lot! I have lots of hats, but I just feel better with hair, even if its not real! Stay positive, I think that's all we can do!

  • CJRT
    CJRT Member Posts: 221
    edited April 2013

    Stage free- thank you for sharing your experience and the tips. Hugs...

  • kingcour
    kingcour Member Posts: 6
    edited April 2013

    I am 38 and was diagnosed stage IV out of the gate last April. I had surgery scheduled, but my PET revealed liver and bone mets, so I had to go straight into chemo. I just finished my 16 th and final treatment. Now I will do Herceptin and Perjeta as maintenance for as long as it will keep me in remission! I have questions about surgery now. Did anyone do surgery after chemo? Did anyone not have surgery? I think it seems like the obvious next step, but my onc had some reservations. He is afraid I will have some kind of complication, then progress, and not be able treat it right away. Any thoughts or similar stories appreciated! I have four kids, so I have no option but to hang around as long as possible! Thank you for your inspirations!

  • Tweetyb422
    Tweetyb422 Member Posts: 28
    edited April 2013

    Hi kingcour,



    I wasn't IV initially, I was diagnosed last year at age 38 too. I was stage III,but got bone and lung mets in February. I had chemo pre surgery. I did half my chemo before to attempt to shrink tumor so I could have lumpectomy, didn't work our that way, ended up with a umx then more chemo. My tumor caused me pain so I was glad to have it out, I just wanted it gone. It's interesting the different ways doctors go about all this.

  • Deyla7641
    Deyla7641 Member Posts: 53
    edited April 2013

    Hi kingcour,



    I'm 33 with a 3.5 and almost 1 year old. I was diagnosed stage III last June with an almost 9cm tumor in my left breast. I was breast feeding my daughter at the time and it just came out of no where. I did ACT before surgery to attempt to shrink the tumor. It did shrink by half but I did have 9 out of 21 lymph nodes involved and pathology showed the tumor started spreading out to smaller tumors. I had a BMX in December. In Feb of this year I started having severe back pain and it turned out I had a small lesion on T12. I had radiation to both my spine and left chest wall and am currently on more chemo due to the spinal lesion. I get rescanned after two more rounds of this chemo. Wishing you and everyone else the best!



    Deyla

  • stagefree
    stagefree Member Posts: 360
    edited April 2013

    Kingcour hi,

    We are dx-buddies, I was also dx'ed with mets from the get go last April. I have read lots of experiences of sisters in addition to med researches since then, as I guess you also have. Personal conclusion is there's no definitive general answer in the absolute benefit of either way. In my case, MOs not have mentioned any surgeries yet, so I am on therapy keeping my boobs for now. Since each of us have our unique cases that lead us to a variety of treatment. What I hope & wish for you is you have the best decision for yourself with your oncs.

    hugs, Ebru

  • brandall
    brandall Member Posts: 97
    edited April 2013

    Hi Kingcour,

    I was diagnosed last summer at 36.  At the time, they thought my cancer was stage IIIa so I had a mastectomy (less than 2 weeks after finding out I had cancer) and then a month later, right before I was going to start chemo, they found a spot on my liver with a PET scan, so I was pretty much stage IV out of the gate, they just didn't do the PET scan before surgery to find the liver spot.  My oncologist did say he was "glad" that they didn't know I had stage IV at the time, or they likely wouldn't have done the mastectomy.  I guess that means he was in favor of the surgery (I didn't ask any further questions, since that statement was actually in the context of a different conversation).  I think I would have pushed for surgery anyway because like tweety, my breast tumors were actually painful and throbbed pretty much all the time.  I had chemo until the end of December and finished radiation the beginning of March.  Two weeks after I finished radiation, I had a total hysterectomy (ovaries out too) to try and stop the estrogen that my cancer feeds on.  I made it through both surgeries (the mastectomy & hysterectomy) without any complications and actually recovered quite quickly.  I think age and my general good (ha-ha except of that little thing called cancer) health worked in my favor!

    There is a thread on the main stage IV board where someone else has asked the question about having a mastectomy after a stage IV diagnosis and a bunch of people chimed in there.  So you might want to search for that!  Good luck!

  • kingcour
    kingcour Member Posts: 6
    edited April 2013

    Thanks everyone! It certainly helps to hear different situations. Hopefully the right choice will surface, but my guts say to get rid of the "mothership". I am so glad to have found this board! I usually stay on the Perjeta/Herceptin/taxotere board. Nice to "meet" some new people! :)

  • aic
    aic Member Posts: 37
    edited April 2013

    Glad you came over kingcour!

  • kingcour
    kingcour Member Posts: 6
    edited April 2013

    Thanks AIC! :)



    Good news today! ECHO was good. My onc told me to not worry and go hide for a while! I can do that!

  • LadyJaye
    LadyJaye Member Posts: 5
    edited April 2013

    Hi all. I am 33 with stage 4 that has met to my bones. I am about to have my 4th chemo treatment and have developed insomnia....it is 4:32am and I have yet to sleep. Prior to the past week and a half I had no trouble sleeping. Any stories or advice?

  • LadyJaye
    LadyJaye Member Posts: 5
    edited April 2013

    I have serious insomnia too. Have you found anything that helps?

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