Triple Negative Stage IV
Comments
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Thanks, Cat. Welcome, Nicole.
Hugs,
Brenda
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Hi ladies! How is everyone doing. It has been a quiet week. I had company all week so just checking in. I had taxol #4 yesterday and feeling crappy today but will get through it. All my hair is falling out too. I was hoping it wouldn't. Last time, A/C made it fall out, so I shaved my head before it happened, but it started growing back during taxol, so I was hoping I wouldn't lose it all this time. It is very thin now and still falling out, so may have to shave the head again
Have a great Easter!
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cat, sending you positive energies your way. happy Easter to all.
hugs
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Thank you Bluebird! So glad you are out of the hospital. Have a great Easter too
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I didn't realize it had been so long since I checked in. Tomorrow I head back for carboplatin #2. I am actually ready to get there to see what the dr has to say. I know that the place on my back is MUCH smaller and the pain from my liver mets is gone. I can no longer feel the edge of the liver myself. I am thinking this is all good news.
Thinking of everyone
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Dear Lost,
It sounds very promising!
HUgs,
Brenda
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Whoo Hoo Lost! That all sounds like great news, especially after only one dose. Please let us know what your doc thinks. I can't wait to hear
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Last September I had malignant pleural effusion caused by breast
cancer cells. We never found out the hormone receptor status of the
metastasis because the tumors disappeared before the first ct-guided
biopsy was performed.After chemo (Carbo/Gemzar) the cancer was declared "in remission" in
January. A follow up ct scan on April 7th found that it had returned.
This time my doctor scheduled a ct-guided needle biopsy which was
performed last Friday, the 18th of April.The biopsy did not show hormone receptor status. It showed lots of
scar tissue and a little breast cancer. The tumors are very tiny. My
doctor thinks another biopsy is too risky and wants me to start chemo
this Friday. I suggested we do an ultrasound guided needle biopsy under
my right arm. The April 7 ct-scan enhanced a lymph node. He said that
the enhanced lymph node did not look like live cancer to him, but he
added that it was a good idea, it wasn't as invasive, and he will
schedule it. He insisted that I start chemo on the 25th and I agreed.So here I go again, back to the drawing board. Why is it so
difficult to determine the pathology of my bc? Has anyone else had this
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I am SO disappointed. I didn't express the gpNMB to qualify for the CDX-011 trial
That is 2 trials I haven't qualified for. I drove to Chattanooga yesterday and they drew blood to test my Her2 with their test. They say only about 25% test positive. I really hope I am in that 25% so that I can try Herceptin in their trial. I should know in 2 weeks.0 -
Cat,
Sorry about the latest developments. Hang in there. Something good might turn up for you.
Brenda
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Hi girls, I don't think I have ever posted in this thread or I may have a long time ago. I don't get on much as I have a 4 year old and full-time job! But I am just sick with worry. Just a little background, I have been dealing with his round of chemo since July 8th 2013. We thought I was still HER2+ but ended up changing status to TN so I wasted 3 months on Kadcyla for nothing. Went on weekly taxol until the tumor in my neck grew while on Taxol and changed to A/C in February. Did the usual 4 rounds and then you couldn't feel it anymore. Did a PET Scan 3 weeks ago and everything shrunk or stayed the same and the SUV was much lower on everything which was great. BUT I swear I can feel the lump in my neck returning...ugh really. I can not do A/C again as I have now had 8 total rounds plus the last round made me so sick I was septic, in pre-ICU with severe dehydration and needing a blood transfusion. I hate that crap!!
So I guess Gemzar is not working. I have next weeks treatment then I am getting 2 weeks off to have my tissue expanders taken out and permanent implants put in. I can not stand these expanders anymore. They are painful and pushing my port up in my chest. I may suggest we scan before having surgery and maybe go onto Xeloda. With my last PET scan the onc was going to do Xeloda if it went to my liver which it hasn't but god really this clearly isn't working.
How do you know how many more drugs are out there for TN? I have had TCH, A/C + Taxol and Herceptin, Kadcyla, Taxol again, A/C again and now Gemzar. I got one year off from this and that was 2011-2012.
This stupid disease has taken so much from me. We built our dream home in 2008 and planned on having a big family. I got pregnant early in 2009 and I found my lump when my son was about 4-5 weeks old and was officially diagnosed when he was 6 weeks old. Fertility never returned and we didndt save any eggs or anything so no more kids. I am so greatful for my son. Now we are looking at selling our home since my income has been slashed in 1/2 this past year. I have lymphedema, scars, infections, feeling like crap all the time and not being able to be the mom I wont to be.
Sorry for complaining, I just needed to vent. I hate this stupid disease.
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Sorry Cat about the trials. That just sucks. I wish my HER2 would of stayed as well. I don't get why it changes status.
Sending good thoughts
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Allison, you have been through a lot! You even had 2 LD flaps done at the same time?!
I notice that you have not had Navelbine, Halaven and Abraxane. I'm sure there are other drugs you have not tried.
I wish you better days ahead!
Brenda
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Introducing myself:
Diagnosed with primary in March 2011. Surgery, chemo, rads. Grade 3 ER+(weakly) PR- Her2 -
Fine until last October/ November when I started getting sciatic like pains on the left. X-ray showed degenerative changes. Kept complaining to doctor and was eventually referred for physiotherapy. After 2 appts, the therapist was not happy and referred me for MRI which showed mets in the sacroiliac joint. Then had full MRI and contrast chest CT which showed several lung mets, two quite large at 4.5 and 3 cms. Also extensive bone involvement. In addition to mets already identified in sacroiliac joint, I had a met in my C7 cervical vertebrae and a lot of disease in my left femur which required strengthening with femoral rod. Two weeks after surgery to my leg the femur fractured, anyway, just walking down the hall. (Horrible noise!). Have had rads for pain relief to neck, sacrum and femur. Started weekly taxol and had third dose yesterday. Also, found at yesterday that the mets have dropped ER receptors so I am now triple negative. It took awhile to get the results back from the bone biopsy.
I need to read through this thread to get an idea where everyone is with treatment and results but for the moment fingers crossed for us all.
SW
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Welcome springwatch. You have been through so much! I hope Taxol knocks the cancer right out!
Adnerb - I need to change my signature line. I have only had one LD done. God I couldn't imagine having 2. That was horrible pain. I am having my 2nd surgery with replacement of expanders since I lost them to infection last time. Not sure I will do this again if it happens. Dam cellulitis.
I just know this lump in my neck is growing again. I am going to see if I can visit with either my onc or NP before this next infusion on Tuesday. I am thinking we should add in carbo with the Gemzar
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Hi ladies. Hope everyone is having a good week.
I'm posting this here because although the ladies on my Jan 2014 chemo board are very supportive, I'm the only one there who is
stage IV. I just got the official results of my PETscan from last week and I know you all will understand how amazing this is.
NED has come to visit and hopefully to stay! No new mets and my met at T4 is resolved. They saw NOTHING of concern.
So I'm over the moon with relief. My hair has started to grow back (I look a bit like a duckling), I'm feeling more energetic every day, my blood levels are all back to normal and I've had the OK from my onc to EAT SUSHI again. Woooooooooot!
I haven't felt this normal in 15 months
OK maybe normal is stretching it......... ;P
Oh and hubby and I just booked a 10 day Hawaiian vacation to take the kids and show them where we met
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Springwatch and Allison, I 'm so sorry to hear you are both going through a tough time. I, too, cannot seem to find the right tx plan. I've just started Halaven (1st dose of 2nd round today) and so far I can't tell if this one is working.Although my progression is relatively slow (?) it still is progressing non the less. I often wonder how long it will take until it renders me invalid , or worse. And just when I start to throw myself a pitty party, my dear daughters get me busy again, get me laughing, give me no sympathy, and can you believe this.... They actually want dinner and clean laundry!!!
I guess I am saying, I can let the fear paralyze me or I can make a conscious effort to enjoy life and push the fear to the back of my mind. In practice, it's tough to do, but I try every day to make the most of it. Give yourself time to fear, mourn, rant, whatever, but then force yourself to do something that you used to enjoy. I actually went bike riding to the river park a week ago with my husband. 7AM and it was so peaceful and beautiful. I would have never done it if he hadn't pushed me to, and I'm glad he did. So please, remember you are loved, we support you in your times of need, and we encourage you to find your inner peace. I'll be praying that that right tx is found for the both of you.
BTW, I had a trans flap on both sides. Recovery was very hard, but I am so much more comfortable than when I had TE's in place. At this point though, I really couldn't care if i was completely flat. Yes, it's gotten to that point emotionally. Just don't care.
Todays appt left me a little deflated. I found out that I am not eligible for the PD-L1 trial I signed up for. So, we have 2 others we may look at if the Halaven does not work.
Carpe, Congratulations on the encouraging news. Hawaii sounds great!
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Carpe, I hope you stay with NED forever! I know how much joy that could bring! Sadly my dance with NED did not last very long. Everyone's different. Where in San Diego are you? I am the only lady with Stage 4 in one of my San Diego groups. That one meets every month at the Miramar Cafe. If you're interesting in joining us, let me know!
SW: Sorry to hear that your receptors turned triple negative! The good news is that the research on TNBC is growing at a very fast rate. I am looking into fluid biopsies. I am so tired of the fact that I don't know for sure what my hormone receptors are.
Allison: I just came home from the infusion room. The carbo/gemzar combo is not so bad. I brought me remission once and this is why we are trying it again. I remember the doctor reducing the gemzar because I had a horrible rash around my neck and under my chest. When the gemzar dose was lowered by 200 mg. the rash disappeard but left a brown tag where the rash was.
Slowloris: Thanks for your words of wisdom! Sorry about the trial. Why were you excluded?
Hugs,
Brenda
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Slowloris - thanks for the positive talk, It is so easy to get down on yourself but god it is so hard. I still function but I would really like to lay in bed and do nothing.
My husband and I are going back to French Polynesia in August. We did our honeymoon there in 2006. This will be the first time away from our son who is about 4 1/2 We will be gone 9 days. I told my onc about it and he said hell yes go, we will make treatments work around it.
So I called my onc office today about my neck and I will see the NP on Tuesday before treatment. I think we should add on carbo. They had called this a maintenance drug but cancer was still active and in several areas and not changed at all in my lung. I don't consider that maintenance.
Ugh, such a crap shoot I tell ya.. I just really want NED
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Allison, wow! French Polynesia??!! That is definitely on my bucket list. Financially, we prob can't do it this year bc I want to spend a family vacation with my 2 girls also. It will prob be the last summer family vaca because my oldest will graduate high school next year and be going off to college. So we are still contemplating where to go. Maybe Punta Cana. We live on the east coast, so airfare won't be too expensive there. Of course my girls want to go to the furthest place away.... Australia!! I don't think so, unless they don't want a college education!
I was excluded from the trial because I am tn. Even though my MO knew this, she tested anyway hoping i had atleast a little ER+. But no, nothing! So unless they open the parameters a little further to include tnbc, I have to look for another. I thought when I read the parameters initially, tnbc was included, perhaps they filled up their quota for it. My nurse navigator said everyone rushes to get into trials when they first open, especially tn's.
everyone, try to have a wonderful weekend.
OH, almost forgot to ask. Has anyone else been on Halaven. If so, after treatment, did any skin nodules start to itch and ache when touched? I can't believe how itchy they are today, but there is no rash, and it is just on the nodules themself, not surrounding skin. My NP said some people feel pain and they consider that tumor death. Hopefully, that means its working. Anyone else?
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Adnerb ~ I'm in Eastlake (Chula Vista). Where is the Miramar Café? I have joined the San Diego forum
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It's on Miramar Road! It may be a 20 minute drive for you, but we are all over San Diego so some have to drive farther. I am in the Kearny/Clairemont area so everything's pretty accessible to me. We are skipping the May lunchbunch because a lot of us are going out of town, but we should get together in June. Hope to see you there!
Hugs,
Brenda
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Carpe, the San Diego forum that I am in is
http://community.breastcancer.org/forum/34/topic/5...
Is there another one?
Brenda
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Hello All! I am not sure when the last ti e I posted here if much at all but I spent about an hour catching up from March to now to see where everyone is. It is amazing there is such a wealth of information here.
I am currently in a clinical trial at MD Anderson in Houston. It is 3 weeks on, one off with Taxol and the trial drug Bay. I completed my first 28 day cycle and start again Monday. I am pretty sure it is not working. I noticed someone in early March said their TN tumors regenerate at the rate of something like 90%. I am pretty much in that same area. I can get new tumors every week. It is crazy.
If I get taken out of this trial, which I won't know about until after Memorial Day it could be a 4 week wait to be able to join another if there is one. This is already causing me anxiety because I definitely have 2 more tumors that have come up during this first cycle. The spread is now nodules in my lungs and adrenal glands. They won't biopsy anything until they know how my restaging goes after this 28 day cycle.
Halaven is my only option that I have not tried that is outside of a trial. The weird part is mentally I feel great. I work full time and lead a pretty normal life. Other than fatigue chemo doesn't impact me too negatively which is so weird I always wonder if it is actually getting in my veins then I remember I don't have hair so yep it is in there.
Not sure what to do next. Jump off the trials train and try Halaven or find that next trial. This is so frustrating and hard. Where is the handbook for cancer!
Thanks for listening !
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Brenda ~ yes that's the one. You gave me the link to this forum on that one lol
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sherbab, how long do you have to be on the trial before you decide it is not working? I hope you find the right one that targets your particular TN mutation/s. Good luck and please continue to keep us posted!
carpe: lol!
Hugs,
Brenda
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Just discovered this group. Glad to have found you. I was diagnosed stage iv after much confusion. A nodule on my thyroid tested positive for grade 3 cancer after a fine needle biopsy. They thought I had thyroid cancer as my oncologist had never had a case of breast cancer spreading to the thyroid. Anyway I also had a 2 cm swollen lymph node on my neck so they removed that and compared it with the original bc tumour slides. Turned out to be an exact match. PET scan discoved numerous nodes in neck and collarbone area as well as a couple of small spots on my lung. On carboplatin and pacitaxel and the ct scan showed shrinkage after 2 cycles. Just had a port put in (highly recommended) and had my 4th of hopefully 6 chemo treatments.
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Adnerb, I have to go one more 28 day cycle that starts tomorrow. All of my staging will be on 5/28 and then they will tell me on 5/29 what the next steps are.
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keldel: good to hear you are responding well to chemo. It bodes well for you.
sherbab: I hope the next cycle will prove more helpful than the first!
Hugs,
Brenda
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Thanks Brenda, I needed that "hug" today!
Kelly
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