Triple Negative Stage IV
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I can't believe I've taken a month to reply after my last post. thank you to whoever responded to me... Especially chirps who knew all the answers for my situation.
I've had my 8th taxol treatment. Things are really questionable. Taxol is sort of the last drug available for me since I haven't reacted to any other drug.
The taxol isn't affecting my MS which will always make me wonder if the onc's caution in not giving me taxol when I only had a lumpectomy with clean margins wasn't a mistake.
So here's my taxol story now.
My markers went down a drop but nothing to mean anything (my doctor is another dr who doesn't rely much on )
I didn't have scans after each new chemo since I have a very large tumor on my breast that keeps growing and oozing (gross). By the time the not-so-smart surgeon realized my swelling lumpetomy scar was more than a seroma just filled with annoying liquid the cancer had moved so deep and to my lungs, that there was no point in cutting off the breast.
so my tumor is still oozing. So what the taxol doing? Physically I've improved tremendously. My breathing is getting better. the tumor in my lungs is getting smaller. I barely need the oxygen that I left the hospital with 6 weeks ago. In the hospital I couldn't even stand. Now I can walk with a walker. Anyone who sees me now can't believe the improvement. Seven weeks ago before I started taxol people thought that was the end of me and now I can even be left home alone.
So we're sticking with the taxol (and lots of prayers) even though the doctor can't explain all this clinical improvement with the big tumor unaffected. So what do you think?
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Mixie, if only you could see the look of utter disbelief on my face. What? One mm!!!! How is that possible? How can that one mm really matter so much???!!!!! I am so sorry. May you get some direction and fast. You've waited patiently and long enough.
Donnadd, I am so SO glad to hear from you. And to hear that you are doing well/better, that is doubly fantastic. Keep it up Taxol. Maybe in time its results will be more comprehensive? There are never satisfying answers but I say take what you can get as far as good news goes, rest a bit easier, and celebrate.
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Mixie...I am with Kay on this... one mm!!! That is crazy!!!
Donna...So glad you are feeling so much better!!! There are so many mysteries with our disease..why one chemo works for one and not another, why some TM's are accurate and others are not..etc....who knows!! All I know is I am thankful when something works. And it seems that Taxol is doing something to help you.
That is truly a blessing!Me...I had my first dose of Doxil a week ago yesterday. So far no SE's. And continuing to live every day to the fullest!!!
Hugs to all you lovely ladies!!!!
Julie
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So at the end of my second week after my first Doxil infusion I started to experience mouth sores. This is the first time I have had a SE from chemo. My ONC suggested a baking soda and salt mixture in water to swish. It is amazing...within a few days some were gone and the others were healing. She also prescribed magic mouthwash which helped with the pain. I will have my second infusion on June 12th.....which happens to also be my DH and my 30th Anniversary.
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Happy Anniversary! 30 years! We celebrate our 20th on the 21st. Sorry to hear about the mouth sores but so good you have found relief! I have had a few mouth sores when starting chemo in the beginning but my body must adapt in some way because I didn't get any more as the cycles went on. May it be the same for you.
Great to hear from you always!
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Hey Kay!! Thank you! And Happy Anniversary to ya'll too!!
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I was pretty happy to hear that the second tumour was successfully removed however when the MO ordered entire body scans the results are less than favourable. Our husbands are close and talk all the time. My husband told me yesterday ( I think they feel it is better to come from my husband I guess) that the most recent scans revealed my friends cancer has metastisized to the liver, lung, bone sand chest wall. Of course they are very upset, and I am at a loss to know what to say or do, or feel. She is such a young woman, with an 8 year old daughter. I am very sad. But I am also very optimistic. Research has come a long way and we are surviving longer and longer with much better QOL. Thank you for listening
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Molliefish so sorry to hear about your friend. Prayers that she finds an effective and long-lasting treatment soon. It is good that she has you for support. That is the most important thing I think.
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I'm getting the information second hand still but I understand that she can't do any trials due to the brain mets? And her husband told my husband they are hoping for 2 years. I see a few members of this group with similar diagnosis, ie about 14-18 months from stage whatever to stage 4. She had a port placement this week so that would indicate chemo. No word or radiation yet. We have a summer place that we have north of here. I feel so fortunate to be able to have them go up for a weekend this summer just to get some time away. What a journey this life is.0
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molliefish. so sorry to hear about your friend. She and her family are so fortunate to have you and yours as friends, and for support as needed. May her bc may respond well to the chemo that's chosen!
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kaayborg, I hope your scan last month looked good! I get CT scans next week to eval effectiveness of Doxil (have had 3 infusions so far).
Meant to mention to you that my 2nd opinion onco (who does largely TNBC) wanted to do F1! I was so happy! But then her nurse called and told me they found out my tissue sample isn't big enough
... my reg onc acted like "yeah, lots of tissue needed for that!" ... so idk what might transpire for that. So many things going on & haven't followed up on that to learn more.0 -
TexasRose, I love hearing of your travels! Did you just have your 2nd Doxil? I had 3rd Doxil 2 weeks ago. I, too, had a bit of mouth sores, but only late in first cycle, then no more! Kind of like kaayborg. I got some magic mouthwash just in case. Hope the Doxil works well for you!
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Donnadd, hope your taxol tx is still working!
Minxie, sorry you're getting so much frustrating news---It's good if it's slow but feeling like you're in limbo can be so difficult.
PeacockGirl, thanks for sharing updates!
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Glad to read about all of you and hope you're doing relatively well!
My month of May was spent feeling run down and nearly but not quite sick, followed by very fatigued. I expected to feel subprime part of the time but was disappointed that I had so little time where I felt up to doing much of anything. Also I lost 10 lbs. That's okay one time, maybe twice, but really it was a wake up call!
This cycle (chemo was 2 weeks ago) I've felt quite good, every day! I'm working a lot on eating and on increasing activity.
Unfortunately, I'm dealing with Hand Foot Syndrome; by today it was hurting to walk. My left hand is not very useful --- partly HFS and partly the nerve/circulation issues stemming from location of some of my cancer.
I'll have CT scans & heart echo-cardiogram next week. I'm optimistic!!
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All Topics → Forum: Stage IV and Metastatic Breast Cancer ONLY → Topic: Olaparib (PARP Inhibitor) Slows Growth of BRCA-Related MBC
Hello triple negative sisters.....i dont post on this thread much but i thought someone might be interested in these parp inhibitors.....Z started a new thread with a great summary....I finally got approved for funding for this drug so it was great to see this new info on here....I''m going to try to use that thread for updates and hopefully find others who are trying it too....my doc is very optimistic about this and thats always a good feeling....lots of hugs...
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Hey ladies!!!
Chirps...yes I had my second infusion of Doxil on June 12th. So far no mouth sores. I swish with the Baking Soda mixture twice a day as a preventive. How did your scans go?? Praying for good results!!!
I have seen another ONC in Dallas about a Clinical Trial (LIV-1). They are going to get some of my biopsied tumor from my ONC and see if I am eligible. She also talked about a few other trials, and referred me to another ONC in Dallas who could also see if I am eligible for any of her trials.I meet with her next Tuesday. My original biopsy in 2015 and one they did this past May was sent to Foundation One. Only one gene identified, but the ONC in Dallas took a blood sample and is sending off to Guardant360 (anyone hear of them?) to see if maybe I have anything that shows up in my blood that matches their gene types they have for clinical trials. All pretty exciting. I will stay on Doxil until my next scan, if no progression will stay with Doxil then move to clinical trial when we see progression.
Chirps...I too have lost weight in past 2 months (18 pounds). But it is mainly because I stopped the steroid pre-meds. I was only doing half dose...but was gaining and swelling. So when I did GEM/Carbo and needed no steroids I began to loose weight, then Eribulin also no steroids. So I asked that I be able to stay off them with this chemo. I don't experience nausea, and since that is what the steroids are primarily for, we have stopped for now.
Nan...I do not have the BRCA gene...so can't do that PARP inhibitor. But I do want to welcome you back to this site, and hope you keep us posted on your results.
Hugs and prayers to all you lovely ladies!!!
Julie
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Did your onc say much about the LIV 1 trial in terms of response rates or main side effects? I am likely starting that trial in July.
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Hi Grahaad...she did not give me any response rates.
I met with the other Oncologist at Mary-Crowley Research Institute today about clinical trials. She has two that I fit into...I won't be doing the LIV-1 instead we have chosen for me to do first is a vaccine created just for my tumor. I will have surgery next Friday to have the 3 cm tumor removed from the lower right area of my lung. That tumor will then be sent to the trial company for a vaccine to be created just for my tumor. That will take about 3 weeks. There are two trial drugs being used that might slow cell growth. One is the vaccine the other is an infusion. The study involves gene transfer. I am very excited and hope it works. Please pray that we have some success.
Prayers and hugs for all you lovely ladies!!
Juli
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That sounds super interesting, Texas. A vaccine just for you! Prayers for great success.
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juli....i remember there was alot of excitment about this....i know you will do great and i pray any se are a breeze...big (((hug))
if youre ok with it , let us know how it goes....im very interested
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hey Kay! Hadn't seen you on here for a while I was beginning to worry about you.
Thank you Nan.... I will definitely keep everyone posted. I am very excited about this!! So far I am the 4th person in the trial. They are only allowing a total of 27 into the trial. Only thing I can figure it must be very expensive to make the vaccine.
Hugs and prayers for all you lovely ladies!
Julie
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Tomorrow morning I have surgery to remove the tumor from my lung. The tumor will then be sent to a lab to have a vaccine created. I am very excited about this clinical trial!!
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Best wishes with your surgery, Julie! I'm thinking of you!
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To all you wonderful people on this discussion board, I want to thank you for your collective wisdom and the beautiful spirit you possess in encouraging each of us on our personal journey with breast cancer. It has been a tremendous blessing to me. I am posting this in the threads I either participated in or read regularly due to my diagnosis. Sorry for duplication.
I've been meaning to update you all on the study I was in, but I couldn't because typing (or anything with coordination) was pretty much out of the question. I officially started in the study on May 22, and found out on May 26 that I had acquired a whole new crop of small tumors in the brain, while the one larger one had grown to more than 3 cm. I immediately began 10 days of wbr. There was a great discussion and it was decided I could stay on the study if I didn't have more than 7 days on 2mg of decadron a day. So, I underwent the radiation surviving on an alternation of Tylenol and Advil to keep the headaches down. We timed the decadron so I could have it down to the end. Really, I wouldn't recommend it, although it pretty much eliminated coming off the stuff at the end since the dose was so low.
My 40th birthday was June 25, which coincided with a low point for me. My coordination on the right side of my body gave up and I took to eating with my left hand out of necessity. I was already scheduled for CT scans on the 30th, so they added another brain MRI to go with it. End result, progression everywhere, but it's my poor brain that matters. I was immediately put on 4mg of decadron 4 times a day. What a help. I can now walk and type and slice a banana. I actually took a shower by myself a couple of days ago. But the brain gets tired and I have to remember to make allowances for it.
July 5, I went to see my onc for the actual report from the scans. I saw all the pictures and know the worst. She has never wanted to give me a time frame, but she sat there and said I have 4 to 9 weeks, and there is no way to know how many of those weeks I will have a functional brain.
There is just no way to convey how that hits. Maybe a long, long silence. In the 22 years that I have known my husband, it is the first time I have seen him cry. I know that he has, but I have never seen it. I'd rather not have.
My parents were visiting and working on our house. It was good to have them here. My older son came home from the summer camp where he was working, because he needed to be with me. That was before we knew, and he was planning to go back. He'll get it his stuff tomorrow when we pick his brother up from a week there. He does not yet know, and I dread the telling of it. I hope this week has been really good for him and that he has made closer friends with the other boys from our church that were there. He's going to need them.
I have been referred to hospice care, but we will wait on that (by mutual consent) until we return from a long drive to Ontario, Oregon to visit my big brother, who cannot come to see me. I haven't seen him in 3 ½ years. We were planning a little family vacation in August to DC. We've just changed the dates and direction. The onc said to go!
On the home front, we are making preparations while I can make decisions. I am amazed at the number of responsibilities I have to extract myself from and train someone else into. Hopefully that means I've been of some use to my fellow human beings. Yesterday we visited a couple of funeral homes in the area. It was a curious, but okay experience. We tend to be very practical and straightforward people, so it didn't seem emotionally taxing, although it must have been as we both came home exhausted. Since we have the choice, we want to have things lined up and sorted out as much as possible so my beloved ones don't have that descend on them at the last moment.
Strangely, I am at peace with all this. Back when I knew the bc had returned, I gave it all into God's hands. It was a good choice because He's carried me along and I've been happy and cheerful all the time. I probably won't be posting on this board again due to time constraints and the emotional energy involved, not to mention mental effort. However, I want you to know I think you all are the BEST!!! My beloved has offered to post on here to let you know when it's all over. That's a sample of my man!
Wishing each of you the very best. Keep your heads up and smiles on your faces. It always makes the day go better!!
With my family on June 17.
Aren't they just the best?
With my beloved on the eve of my birthday. Our church gave me a fantastic party!
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Update...surgery went well. Representative from lab was in operating room ready to take the tumor to their lab. There was enough tumor and the surgeon got it all. It should take about 3 weeks to get vaccine made and then we will schedule my appointment. I did stay 2 nights in the hospital, they took out the chest tube the day after my surgery and I stayed to make sure no complications. I am now home. A little tightness on my right side where they did surgery, but all is well. They used a robot to perform the surgery...so largest of our incisions is 4".
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Wow, I really hope this works. Imagine custom made drugs! Please keep us informed. Also, is this supposed to keep the beast at bay or cure you of it?
My wife is on Xeloda, and after the results of her last PET scan it is working. Some mets to spine gone and others reduced. My wife had ER/PR+ Her2- since late 2012 then it morphed into triple negative. I left out a whole mess of detail. She had three BC's at once ER+, grade 1, 100% estrogen, ER+ grade 3, 30% estrogen (inside the grade one tumor) and rare triple negative metaplastic in 9 lymph nodes and surrounding tissue.
MikeW.
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Julie, I am so glad to hear that all went well. Excited to hear your results once you start treatment.
rgc77, I am so saddened to read your post. You write so well and are so strong...so admirable but it ultimately is what is, an incredible loss far too soon. I am very, very sorry. My prayers go with you and your family. They are beautiful. May peace dominate your journey and theirs.
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Hey everyone....received word they were able to create the vaccine. I will receive first one around the 7th of August. This is not designed to cure...it is an immunotherapy instead of chemo therapy.
Hugs and prayers for all you lovely ladies!!!
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Hi all,
rgc77, kaay, texas, ddona, chirp, mike, grahaad, nan.. hope you all fine.; would love to hear from you.
thinking about all of you and sending positive vibes and lots of hugs.
keep it up.
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Hey 4ever. I was wondering about all the ladies on this thread too. It's been quiet for a while. Just celebrated 2 years with mets here. Pretty happy about that as I've been feeling so well. Hope it lasts and lasts. Scans again in 3 weeks.
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