Ladies in their 30s?
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Welcome CajunQueen & Dana_27, but sorry that you have to be here!
Brandall - I'm glad that they were able to just switch you to another AI. I hope you have a great spring break trip, and that Femara is zapping any & all stupid cancer cells.
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Hi ladies! I pray everyone is in good spirits. Just had a CT and bone scan; I am kind of nervous as I have been feeling new pain in front of my throat; and with each scan there is uncertainty. I get results next week; trying to keep positive thoughts, but trusting that we will put a plan in motion to attack this stupid cancer.
I have to tell ya that reading everyone's post helps to ease a lot of tension; we are all survivors and live to fight.
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I am 37 with brain mets. Well, maybe a brain met but they're still not sure. I started in 2012 at stage 3, triple positive. Weird, frequent headaches set in about 4 weeks before my stage IV diagnosis (in April, 2014, just over 2 years since my initial diagnosis). Had a CT scan and there it was...a big brain tumor (>3 cm,
.5 cm) that had shifted my brain and was causing the headaches. I had it surgically removed about 4 weeks ago, followed by Cyberknife.I have two daughters, ages 8 and 7. Had a really, really, really bad Mother's Day. Now I'm kind of meandering through the days. I meet with my onc in a few weeks to decide on something. He wants to stay the course and not treat any disease until it is found. I had just that one brain met and no evidence of disease anywhere else (yet).
That's my story. I'm still in the "I can't believe this is happening" stage. Luckily, I have an incredible network of friends and family who are willing/able to help out.
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leftrightrepeat - Sorry that you are joining us, but welcome all the same! I'm sorry that you had a rough mother's day, and just know that you have a lot of people who understand and will support you in the stage IV boards.
When you are ready for it, there are also some threads about what people are doing for fun, etc. that can help you see what people are doing to live even with this stupid disease. I personally have found that to be very encouraging, but I know that it is not for everyone or at every stage of the process.
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Hi Leftrightrepeat, sorry you have to join us here! I have a 4 and 7 year old, and Mother's Day can be hard. I can say that this year (almost 2 years after diagnosis) I didn't feel too sad on Mother's Day, still some sad moments, but mostly happy. The first 3 months after a stage IV diagnosis are the worst. I promise it does get better. I spent the first three months sobbing. Now I'm pretty darn happy! I even had progression recently and I'm waiting for a new treatment (trying to get on a clinical trial) and I'm still much happier than the first 3 months, so hang in there! Many hugs to you!
Curious what treatment you are on now? So your MO doesn't want you to change even though you have had progression?
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Brandall: I am just on Tamoxifen now. I just had brain surgery four weeks ago and Cyberknife for 5 days last week. I need to have reconstruction surgery to get my final implants but the neurosurgeon says wait 3 weeks until after Cyberknife. I meet with my oncologist in early June to discuss. I think he wanted me to get through all of the bran stuff first. Right now I think I am cancer-free. There are spots of concern on the brain MRI but they are too small right now to diagnose.
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Oh, well that makes a difference. I thought he was just going to leave you on your current treatment going forward. My oncologist (and the second opinion oncologist I saw today) all agreed that as soon as there is progression, it is time to move on. My progression was very slight too (growth by only 1-2 mm) and they both said changing treatment was the best option. The second opinion oncologist is one of the leading experts on breast cancer in women under age 45 too. It does make sense if he felt there was no new growth anywhere else to try and get you through these surgeries and then discuss a change in June. I hope you don't mind that I asked, I was just worried for you! Hugs! It is hard. I hope that your reconstruction surgery goes well.
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Hi. I have been meaning to start a journal for my 11 m/o daughter but have been dragging my feet. Figured I would start here. I'm now at stage iv (bone and lymph mets - Jan 2014) after first being diagnosed Stage III, 29 y/o in 2011.
There have been complications but also some positives. For example, my C7 broke from the cancer and I had to go out on disability, but it means I spend every day with my little daughter during a pivotal learning curve in her life. Its been beautiful. I have been lucky, the C7 fracture has not caused me the paralysis I was told would happen.
Anyhow, just wanted to start somewhere. Before I wait too long.
Thanks
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saq I totally get you. My son was 5mo at dx he was 15mo when my bone met took out my. T11 . He is now 3 1\2. I look at him like a time capsule. He is my life and reason for me fighting with all that I am. Good luck and I hope treatment gets you to NED or Stable so you can have many more memorable days with your little virl.
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thanks fujimama. Its nice knowing other people are still hanging in too.
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I asked this in the bone mets forum too but I have a tumor marker question - I know people ask questions like these all the time, but I know you ladies understand the anxiety. I recently had tumor markers drawn about 4 weeks ago, and my CA 15-3 (normal range <32) went from 10 a couple months ago to 13 4 weeks ago. The other marker (I'm blanking at the moment) is identical. Previously it had always been in the 12-15 range other than when I had my femur met and it shot up to 60. I also just had a stable PET scan yesterday (only one metastatic node now and an unremarkable brain MRI). I am concerned about the slight increase in the tumor marker, though my MO has said this is considered "stable" and that readings can vary day-to-day. Has anyone experienced something like this or heard the same thing from their doctors? I know that this has been a pattern where I'm left with anxiety after scans even though I know I "should" feel grateful. I just can shake the feeling of waiting for the rug to be pulled out from under me when I feel like I'm finally getting my bearings.
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Hey Ladies,
Haven't checked in in a while. Just wanted to say hello and let you all know I am thinking of you. Doing okay here just busy with work, kids and life. Love and Hugs to you all. Jena
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CJRT- tumor markers are an inexact science. They do flucutate. MIne go up and down almost every blood draw ( every 3 weeks). What you need to look at is an increasing trend over several blood draws. If you dont see an upward trend( and I am not talking an increase of 2-3) Then you are fine. It also helps to know which if any of the tumor markers were high when you were diagnosed. Only one of my tumor markers was abdnormal when I was initially diagnosed so that is the one we focus on most.
Also, things such as inflammation, stress, and illness can cause your markers to rise. So keep a look at the big picutre.
Hope this helps
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thanks leftfootforward!
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Hello ladies!
I was 37 when originally diagnosed with Stage III in April 2012. It came back on my sternum in May 2013. For both time, I was able to beat it. Then it returned on my chest bone, lymph node, and lung in Jan this year. I am now on Herceptin and Carboplatin. The PET-CT after 3 months was good. All tumors were shrinking. But now I have been having shooting pain on my chest bone and may back and I am extremely scared. Carbo really affects my platelet and I had to postpone my treatment for the 3 time last week. I will have PET in June and my onc already said they may switch to TDM-1.
My kids are turning 7 and 4 next month. I just want to live and see them grow. Luckily my kids keeps me busy so that I don't sit around and think the worst case scenario. But there are moments of "what if?" terrify me so much.
So coming to here and knowing this may ladies are fighting really helps me to continue.
Thank you for giving me strength! Big hugs to you all!
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CJRT - my tumor markers bumped around for awhile and it was nothing. Then they started steadily rising by a few points every month and they never lowered again, a cancerous lymph node appeared on scans after about 5 months of a continuous rise. So I have had both scenarios, where the rising was a normal fluctuation and where the steady monthly rising did indicate progression. I will say that my tumor markers spiked when I had strep throat once, so they do rise and fall for other reasons than cancer! Hugs to you, I know that anxiety well. Just remember that the latest scan says you are stable and pretty much all doctors prefer scans over tumor markers. Hugs to you!!!
Hi Keena, sorry you have to be here! My kids are almost a year ahead of yours. I have one who turns 8 in September and one who turns 5 in August. It is hard hoping with everything that you have that you will be here to see them grow. I get it! Hugs!!
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Hi ladies, I was on here a few months ago after a local recurrence to 3 lymph nodes and possible skin mets.....well, no more stage 4 denial for me. I am currently recovering from having a tumor removed from my cerebellum and 2 weeks of rads. And the red, tight skin is definitely BC. I have a great husband and support system through this. I have a 3 year old son and so much to be happy about, but I have to be honest I am having a really hard time right now. I don't know how things got so out of control so quickly. I was on kadcyla and femera and doing everything I was supposed to do. So know I have chemo starting next week. It's a combo on taxol, herceptin and perjeta (sp?). I would really be grateful if anyone had any words of wisdom here or even experience with this chemo regimin. Thank you!!
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kelley279: I just had a tumor removed from my cerebellum, too. And rads (Cyberknife) for a week. Nothing else is showing up on scans as of yet, so I'm not on any chemo or Herceptin right now. Do you have a report on the brain tumor? My initial diagnosis in 2012 was triple positive but the brain tumor was ER-, HER 2 positive. My surgery for the cerebellum tumor was in April, rads in May.
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Kelly so sorry to hear about your recent progression. A dear friend (who just turned 36) had progression on kadcyla. She has previously had brain radiation prior to starting kadcyla. Anyway she was switched to the same regimen you will be on and had very good response to it pretty quickly. She started on it in February and major shrinkage plus tumor markers plummeted. They even began peeling back the chemo for her and just leaving the perjeta and herceptin. I know how scary it can be. I also have a 3-year-old son. Hopefully once you are on the new treatment, you will feel better than you are tackling the cancer back again. Also don't be too hard on yourself... It sucks that we have to deal with any of this, especially when we've all already been through so much, so I think we all get down, no matter how much else in our life we have to be grateful for. I know I always feel worse when things are switching or feel more uncertain. Sending you positive thoughts for peace and positive results with the new course.
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Kelly--I started on taxol h and p. 18 weeks of taxol and I had almost a complete response. I have cont on h and p every 3 weeks since oct 2012. I have cont to have a reduction in liver and spine tumors...they are now just mm's and I currently have no active disease. I love this combo! Well I didn't love taxol, but I made it. I really hope this works for you! I read your post on the mothers thread too. I think that is why I haven't written anything to the kiddos. More than anything I want my 3 yr old to have memories of me. Sending you a hug!
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Thank you guys so much!!! My cancer is triple positive just like before. I am so happy to hear the TPH has worked for some! After the kadcyla mess I was starting to lose hope. It didn't feel like anything was working. Don't know if I could survive 18 weeks of taxol though, kjones you much be a rockstar!!! Actually I think any of us fighting this fight pretty much are!!
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I'm glad to see I am not the only one out here. I was diagnosed with BC 6 days before my 33rd birthday in May, stage 4 straight out the gate. Despite feeling totally fine, the PET scan showed mets to 4 lymph nodes, my breast bone, left pubic bone and potentially my lungs. (Lung nodules run in my family so they aren't 100% sure those are mets).
Since I am triple positive, I have been doing taxol infusions every week and herceptin and perjecta every 3 weeks. I just finished my 6th week of treatment on Friday. Besides the hair loss, my side effects have been pretty minimal, so I am hoping they stay that way. I have actually still been able to work pretty much full time.
For the non BC about me portion, like I said I am now 33, live in NYC, single with no kids. Thankfully my family is close by and my friends have been amazing, but it would be nice to connect with others who "get it".
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hi becs511, nice to "meet" you. I too was just recently diagnosed stage iv right from the start with lots of bone mets in April. I am 35. I started out with A/C chemo and had to stop for a few weeks to get rads to lower spine for pain. I'll be doing 2 more ac and then will go to taxol. Glad that you are having minimal side effects with that hopefully I'll have the same. I've still been able to work too, my job is pretty flexible luckily. I'm glad that you have family close and good friends near, it's nice to have support close by. If you ever need to talk feel free to message me :-)
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Hey girls...Hope you are doing alright. I am feeling a little nervous today. I get the results of my bone scan tomorrow. Last scan showed slight progression so they switched me to anastrozole & xgeva from tamoxifen & zometa. Been on the new meds for a month so we get to find out if they are working. Keep your fingers crossed for me. I hate that there are so many of us on this thread. Way too many of us on the site in general... 😕. Anyway, just wanted to check in. Do any of you juice? If so i could use some good recipes!! My garden is going crazy and I have heard that juicing is a good way to make use of my veggies!! Have a great 4th of July if i don't hear from you guys before.
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hi Jena,
Praying that your bone scan came back good with no progression and the new meds are working. I juice some especially right now as I'm doing chemo and sometimes it's the easiest thing to "eat". One I like is called green lemonade. You use 1 green apple, 3 handfuls of spinach, 6 kale leaves, 1/2 cucumber, 3 celery stalks and 1/2 lemon. Most time I just experiment with different fruits and veggies. Carrots and apples pair well together also.
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Hello!!! are you ladies also getting PET scans? Bone scans don't show much. I can attest to this! I am just curious what your dr orders to check progression. Hugs!!!
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Hi Jena- How did it your scan go today? Keeping my fingers (and toes crossed for you).
Last month when I was diagnosed, they gave me a whole packet on nutrition, and they specifically called out no juicing. I am not sure what the reasoning is, maybe fear over pesticides? Weird since I can have both veggies and fruit, but I have been staying clear of it.
I think my plan is to get PET scans every 4 months. I have my first one since starting treatment in late August. But I meet with my Doc tomorrow, and am hoping that she can feel if my palbable lump has started to shrink or not.
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i had a pet scan and bone scan originally but I think he is only going to do bone scans for some reason to check for progression, we haven't really discussed this yet but I'll be asking him in my next follow up cause I am curious.
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Ladies,
I am an active member of the other boards, as I am too old for this one! I
When I was bald, I started 'bedazzling' my head. I just couldn't be comfortable in a wig and I preferred to go topless, but was a bit shy about it. It was SO wonderful to decorate my head and have people stop me to chat instead of give me that sympathetic half-smile and a nod. I could not get through a shopping area or public place without being stopped or complimented . More importantly, I was having wonderful conversations with people about their stories, their cancer experience. It made me proud and confident. Its really quite liberating during this time.
Anyway, through lots of encouragement, I launched my own product and I call it Sassy Head. I only have one design now, but I REALLY need some people to give it a test spin for me. It works wonderfully on my skin ( I could sleep in mine and get 2-3 days use) but everyone is different.
Please private message me with your address if I can mail you a free one one to try.
Below are some pics. The first group was my head when I was bedazzling, and the second is my available design. I plan to do additional designs, including a pink ribbon and designs for children. Your suggestions are welcome!
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Jena - I hope that you got good results today! Thinking of you!
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