Ladies in their 30s?
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Aic, thanks
and good to see to see you again! Ah it looks like we have more things in common - now with our supportive ex-hubbies! I hope I get to meet NED like you!!TexasRose! Here we meet again too! Thank God I am not the only one pre-menopausal.
Brandall Whoot whoot! Awesome news!! Wishing luck with your next pet scan. Hearing that you started to run makes me want to get back on the treadmill. I like that word you used "chemopause". But I admit I would like to see my periods coming back after chemo and the hot flashes gone.
Thanks ladies for thinking of my little angel.
Onestep, sorry to hear that news, hopefully you will find more info. I have had similar thoughts about planning my own funeral but I must say it feels much better to plan and enjoy the time I have here, living. Go out
enjoy the sun on your face, feel the breeze around you, spend time with your loved one doing the things that make you happy.Forever welcome:) I wonder also if your employer has the right to make such a change? Keep fighting but remember to be kind to yourself, your health and your body because you will need some days away from work to replenish your energy.
Glad to meet you all ladies!!
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Hi ladies! I'm triple negative, diagnosed from the get go Stage IV.. Just wondering how many were able to have BMX with recon???
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Ok. That makes sense. Thanks.
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Hey ladies...hope you are all well. There are so many of us on this thread. I feel blessed to be able to share with you.. You all give me hope and strength. :-)
Yesterday was day 14 of my first chemo treatment and like everyone said my hair just started falling. I shaved it all off last night and my husband helped make sure it was even. My son 9 is sad but told me i am still pretty. my daughter 11 is so strong it didn't phase her. I wake up hot and cold all night wearing a light weight knit hat. any suggestions...lol.don't sleep well anyway with the meds. Also... anyone having or had side effects from radition? Juzt finished 2nd week of radiation to left pelvis...glad over...now i have 2 weeks of rads to spine. wondering what to expect if anything. Plevis caused bathroom issues this week...wondering how long till vack to normal. Thanks to any and all suggestions. Went back to work this week and feel a little freaky w/out hair. Everyone is supportive but you can't really relate unless you have been bald.0 -
I got my PETscan results today. In the last pet, there were 3 individual tumors on different lobes with 1 area of confluent lesions. Of the 3 individual lesions, 1 is gone completely, and the other 2 have decreased in suv down to 3.2-3.6 (with the liver normal being between 2-3). The confluent area was still at 4.3,but even that was down from 6.1. Also, all of the areas were now being called areas of focus rather than lesions which my MO said means that they aren't seeing a true mass in the areas any more. Its a regression, and I'll take it! Especially since the pet was done just 2 weeks out of last chemo, my MO said that it is very likely that the 2 areas that are in the 3's could be dying cells. She is going to redo tumor markers on Monday when I do some other blood work just to get a postchemo reading since the last ones were done before chemo #6. Next step, hysterectomy on Tuesday 2/5 and then begin my AI. I'm happy that things are regressing which makes moving on to this next step much easier!
j1e1n1a - I haven't done any radiation so I can't be a help there. I did the hot/cold thing all night on chemo, and I couldnt wear anything on my head to sleep because I'd pull it right off as soon as I got hot. Someone had recommended to me to use a satin pillowcase, and I found that actually helped keep the temp more consistent for me. Of course, I'm in FL where we are still using A/C so I'm not sure how that would work somewhere cooler. I know the shaving thing & going bald is so hard. Are you wearing wigs, hats, scarves? I did wigs at first b/c I was more self-conscious, but now I wear primarily hats as I find them more comfortable.
Brandall - Congrats on the tumor marker reduction!
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Congrats nbnotes.... that is great news!!!!!!
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So True!!!!!! I hated calling too. We must remember that they"work" there and get paid to listen to us and answer our questions--not judge us or get pissed for any decisions we make. Actually, I have been having issues with feeling guilty about getting other oppinions (like I'm being unfaithful). I love my Onc and his staff, but when they found out I went to Cancer Treatment Centers in Philly they seemed pissed. I recently had a PET and my skeletal muscles lit up...Anyone know about that?? I have been having regular scans for about 7 years and NEVER hae I felt so confused, scared, and alone. My onc told me to see a nurologist and I did. It just so happens that the hospital in Philly is like a one stop shop and many tests can be done in mere days. I'm still waiting for results, but I'm wondering if it's the Affinitor/Aromasin treatment....Anyone on that treatment? My body has been hurting for months and I'm always tired, but being a mom keeps me going and I don't let the pain prevent me from doing anything. Anyway, I got over the whole "Don't wanna bother my onc thing" when I was driving myself crazy waiting to hear results. We are not there only patients and "They" are not the ones having anxiety...We are! don't feel funny to pick up that phone and end the madness in your head--it's your life and they get paid to make sure that u are well (that includes your emotions). I'm sure they won't be upset and believe me, u won't be the only person calling for results. One more question........Anyone ever have a bone marrow aspiration(in the bottom of back) to find out if there was a recurrence? My levels have been slowly creeping up and my onc suggested if PET didn't find active cancer that we do a marrow test...I can't make sense of it. Have a wonderful weekend and if anyone out there could help me out, I would truly appreciate your input
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I remember the day I shaved my hair off my head.. I took a xanax, a glass of wine, and headed outside. My husband took care of the hair cutting part, my best friend was there to keep me laughing, and my two boys were in the house. After some time, tears, and glasses of wine, I went back into the house to see my boys. To my surprise they were both so kind and unbothered. At the time,my little one was two and my now teenager was seven. My baby asked to rub my head and the seven year old said "you look like the lady from GI Jane..wow mom your even pretty bald!" I was shocked, but kids are resilient and mine were amazing. I went out and got a wig that I never wore because it was uncomfortable and I rocked some cool scarves and earrings. It sounds like you have a loving family. This part is the hardest or at least it was for me. The first 4 rounds of chemo sucked and the second 4 sucked too, but were much more tolerable. It gets better and as far as the spine situation, the rads on that area shouldn't give you much trouble. Good luck and God bless!!!!!!
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Ango- Yess the squeeky wheel does get the grease!
Brandall- SO glad to hear that your TMs went down!
Forever fighting- No problem being from Canada! Seems your doing everything to stay sane. Keeping a normal life and keeping your mind busy is very important or else we'd just what if everything to death! You may not lose your hair- it depends on which treatment you will be on and how you react to it. Most the first line treatments do have a high rate of hair loss but its not set in stone! Depending on the location and severity of your mets you might have a full life ahead. Some of the women (you'll discover as you comb through the boards) have been stage 4 for 10+ years, so it isnt an immediate death sentence. I am like you- i feel great for the most part and sometimes i actually forget about cancer! (well then i am reminded LOL) but living in the moment can sure give us a better peace of mind!
kjones- to add to what brandall said- the markers arent terribly reliable, for some women they are and others they arent, and they give just a slightly sooner knowledge that somethong might be going on. Many ppl dont get theirs tested (myself included)
jena- very true! you just cant relate unless you've been bald! I never wore anything on my head in my home, i never had too much problems with the hot and cold so not sure....
Nbnotes- Whoop whoop! Glad to hear of regression! Yes it take a while for the cells to completly die off and then be cleaned up by the body. You could still see regression on future scans!
Tammy- i also had those feelings of being unfaithful when i went to another dr (my onco left the practice and went somewhere too far out of town for me to travel to) i loved the office stafff and nurses at my old doctors... but i am getting great care where i am at now so those feelings did subside. Shame on your dr and his staff to act pissed for you taking your health care into your own hands! Its not like you're switching dry cleaners here- this is your life. You would expect your dr to have better understanding in the matter!
Sorry tammy i dont have experince with either of those things- hopefully someone will chime in soon,
I have my scan monday... just a c/t to see where i stand with this treatment, its the first since being on xeloda/tykerb....
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Happy Monday everyone..hope yoy alll have a good week.
Rose - thinking of you today.... good luck with c/t stes-So happy for yourr news last week.. thanks for satin pillow case advice seems to be helping.
brandall- great news on markers going down.
Tammy- after my Pet It showed in spine but not skeletal muscles..wish i knew sorry. They just biopsied my T9 vertabre when they did a kypoplasty.. but they always take part of the bone w this procedure bc they strengthen area with some kind of cement stuff. Sorry im not much help in your situation.0 -
lol ....nbnotes part of that was for you. happy for yournews last week and thanks for plow advice... it us Monday..good grief!
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i give up pillow!
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nbnotes..Best wishes on surgery tomorrow.
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Jena - Thanks! I'm definitely having a "Monday" so I'm glad to see I'm not alone
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I am having a monday too! It took 4 pokes with the needle to get a vain!
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Nbnotes - Great news!!! Good luck on your surgery. I would love to hear how things go and how you are feeling afterwards. I'm doing the same surgery in March. Are you having it done by robot?
Rose - I'll be thinking of you until you get your results! Hopefully your treatment is working!
J1e1n1a - How did the kyphoplasty go? I hope it works well for you!
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Ok I have another question...well questions...is the prognosis worse for people who are stage 4 from the get go as aposed to people who are diagnosed with stage 2, for example, and then years later they have mets? Also, is stage 4 the same for any type of cancer ( er/pr, her+, triple neg, ibc)... Again asking about prognosis. I know treatments are different, so I'm guessing yes?
Good luck to all of those still in treatment. I pray for good results and a speedy recovery. May you feel God's presence and put your faith in Him as He gives you strength and comfort.0 -
Brandall - Thanks! I'll let you know. We are hoping to do the robotic, but since I've had a couple of other surgeries (gallbladder & reflux) and know that there are adhesions, there is a higher than normal possibility that we might have to end up doing it the old open way.
Kjones13 - My doctor said that us finding it so early as a stage 4 before I had symptoms was good, though she has never put any amount of time on it other than saying that people can live with stage 4 as a chronic disease for many years. I think you can find things out there that go both ways, but the thing I would recommend is stay away from googling or looking up anything about prognosis. All of those stats are outdated as new medicines come into play that they didn't have 5 years ago. Your cancer is individual to you, and your body will respond to different things than someone else. Please don't let any stats define you, and just know that there are a number of things in the arsenal of medicines that you can try. I know this is easier said than done, but google is not our friend in this case, or at least not mine.
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Kjones......I agree with nbnotes......prognosis is a total crap shoot. If you try to figure it out, you end up very confused. I've seen women diagnosed stage IV from the get go and are still here 10+ years later. On the flip side, I've watched women here who were originally lower stage, find mets years later, and go downhill very quickly. I think it depends on the pathology of your cancer, the ability to find appropriate treatments that your cancer responds too, and the aggressiveness of treatment. That's one of the hardest things about stage IV breast cancer.....it seems so different for everybody. Nobody's journey is exactly like anybody else's. (((((hugs)))))
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You guy's are right...I guess I just wish there was something i could tell my family to give them relief...especially my parents. They both have major heart issues and they cry every night for me...my husband is a rock and he has lots of faith in me and God. Just hate to see others so upset...just want to tell them I'm going to be ok...honestly I want to say that to myself too...
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Just tell them that it's a chronic disease and you may very well be here for a long time! I sense that you're a woman of faith so I will share this also.......I tell my family, that I will be ok whatever the outcome. If the disease is controlled I get to stay with them for a long time and if I don't make it, I get to go to a much better place and be with others who love me. I know once I reached a point of acceptance, my family and friends felt a lot better too. But it takes awhile. You have to give yourself time to adjust. Take good care of yourself first!
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Not really sure- i havent heard much about the actual prognosis being worse off... ALthough i have heard that younger women have more aggressive tumors often times, but they respond (the aggresive cancer) quicker and better to treatment.
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Kay is so right- its sorta like diabetes in that way- some ppl do very well managing it while others have health problems right off the bat and dont fair so well...
Kjones- i hate meeting new people because i feel like such a bearer of bad news when they find out i have cancer and i have to explain i will be living with this my whole life- way to kill afriendship before it starts!
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Hi all, I have been gone for a bit due to having my mastectomy. Its comforting to find we have such an active site.
Marcijo.. I was dx as stage 4 pretty early and at first my onc didnt want me to do surgery, but after my second set of scans he was comfortable with it. I could have done reconstruction but choose to wait because I was worried about complications delaying my return to chemo.
Kayrnic I love what you said.
I tend to tell my family the same, that stsge 4 is a chronic illness. It sems that there are many young women who lI've long lives with stage 4. I take the oppinion that I will just be one of them.0 -
Hello!
I've never posted before so I figured this is a good place to start. i will be 36 in a few days, and I was diagnosed stage IV off the bat 18 months ago.
Every day is worth the fight!
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Welcome Beebop! There is also a 2013 roll call thread that you can introduce yourself to the whole group... Glad you've found us!
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Brandal- yes it hurt and my PCP said cancer doesn't hurt. Yikes! And it itched too.
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Just checking in after surgery. They were able to do the robotic type so I was able to come home yesterday afternoon.
Brandall - i know the hysterectomy is considered more invasive than bmx, but so far, it has gone so much easier for me. I was already in chemopause so those side effects havent been any different, & I even managed to sleep in my own bed not a recliner last night. My pain has been well controlled and getting up& down has not been as bad as expected. I did just knock on wood after typing that to be safe, lol. I hope that you find it pretty easy, compared to everything else we've been through, next month as well.0 -
Nbnotes- Glad to see you're doing well.
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I am so sad to stumble on this board because it is heartbreaking how many of us are going through this so young. I was diagnosed with Stage 2 in July of 2011 at the age of 33 when my son was 7 weeks old after finding a lump breastfeeding. Thought I had beaten this with chemo, Herceptin, BMX, and Tamoxifen, but just found out yesterday that a suspicious spot randomly found on an xray was a bone met. I have a 5-year-old daughter and 20-month-old son. I need to do whatever it takes to be around for my two babies!
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