Triple Negative Stage IV
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chronquist22: always good to get a second opinion. And yes, this disease is a roller coaster ride. Waiting for scan results and TM results is un-nerving at times. I try and focus on the positives and try and keep one foot forward, not always easy though
Praying that the next tx for your mom works with killing the cancer.
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Sharjin, I'm feeling about as well as I do. LOL. The last scan showed no evidence of active disease in my lung tumor after the radiation. It's still there, though, blocking the lower part of my right lung, so I get winded if I have to walk far. I get another scan in May. Hope your mother does really well and feels better soon.
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Well Xeloda didn't work. I am meeting with a trial team for two possible trials. I also reached out to an IR and he will review my images to determine if I am eligible for any type of radiation, including Y90 and TACE.
Hartish - Do you know your results yet?
chronquist22 - So very glad you are there to support your mom.
Sharjin - Keeping you and your mom in my prayers.
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kaylynne: sorry xeloda did not work. What about immu132? I have been keeping up with you on the liver Mets thread. Are you sure it is just not a flare on the xeloda and need some more time? I saw one of the trials was a PARP inhibitor. I have my eye on those as well. Did you have genomic testing in the past looking for mutations? Might be something to think about at this point. I plan to do that when carbo Gemzar stops working.
My MO emailed me today and said mri showed regression of cancer and no new lesions. I will see official mri report on Friday. So will stay on carbo and Gemzar.
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hartrish - That is fantastic news. So very happy for you. I met with the trial group today and neither of the two originally discussed are available yet but I signed up for another one.
A Study of Prexasertib (LY2606368) With Chemotherapy or Targeted Agents in Participants With Advanced Cancer ClinicalTrials.gov Identifier: NCT02124148
This will be an iv chemo every other week and a pill taken twice daily. Biggest risk is low white and red blood counts.
Waiting on scan appointment and also have to wait another 2 weeks to get Xeloda out of my system. I have no idea other than the markers is X was working or not. I think my MO was tired of dealing with me. I really like the new MO at Stephenson Cancer Center.
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kaylynne: so glad you got on a trial and you like your new MO. Sending prayers and positive thoughts your way.
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Sharjin: I have read your long emotional post. I am really sorry that your mom is going through all this. But i share your pain and understand your feelings. I am from India and here for my mom. She is in advance stage of BC and currently on Halaven chemo (for triple negative).
I can not express, how painful is to see your loved one to see in constant pain and struggle. But like you said, i have faith on almighty. He has given us so many good days with my mom. She is the strongest woman i ever seen in my life and everyday her spirit inspires us.
Sending my best wishes and positive energy for you and your mom.
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Chronquist22: My best wishes and prayers are with your mom and family. I hope, you all find peace and strength with each day passing.
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Crossposted.
Just off the phone with the IR I contacted. He says I have too many affected lymph nodes outside my liver in my chest wall, collar bone and sternum. This is the first time I have heard this. I knew I had them in the left axillary which I thought was under my left arm. He says 50% of my liver has cancer and even if I didn't have the other areas involved, he said the radiation could possibly kill me. GREAT!
I had my scan this morning and will have blood work, ekg on Monday and they will give me CT results. I am asking they pull it up on the screen and show me everything! I'm still in pain but not like on Xeloda and I am so very tired. I've changed my hours to 7-3 without a lunch to try and get more rest. I hate cancer.
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sharmal: thank you so much!
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Posted long update and lost it. Too tired to repeat. In short... awesome trip, depressing return. Worried about progression. Appt is Tues.
Reading but not time to post much. Wish I could. Praying the best for all.
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Sharmal: Thank you so much. Having someone around is so comforting. I am originally from Bangladesh, staying in Canada and my mom is taking treatment in Singapore. She keeps travelling from Bangladesh to Singapore for the treatment. Sometimes I feel bad to keep whining about everything because everyone over here is going through so much but this is so depressing and difficult at the same time. Sometimes I feel like I want sleep and wake up to a long lost normal morning again. My prayers are with you and your mom and family. May the Almighty keep your mom strong like this throughouT the fight. Thanks and hugs
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Kaayborg: Thanks for the picture. I was waiting for your post over here. So happy to see you smiling on the beach. Hope you find the next effective treatment as soon as possible. You have come so far with your strength and effort and patience, just keep doing it. The Almightily is taking care of everything.
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Kaylynne: I am so very sorry you are going through such a difficult time. My prayers are with you. Did the doctor tell anything based on your recent report on how they want to proceed next? I hope you can start the treatment with the trial ASAP. Keep us posted.
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Hartrish: I am so happy that you are responding so well to treatment. That's such a great news. Hope carboplatin keeps working for you for a long long time and take you to NED. Really it feels like we are winning against disease. Keep winning. The Almighty is with us all. Keep us posted.
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kaayborg: so glad you went on your trip. Love the pic of you on the beach. Praying for you!
Kaylynne: sorry you are having a tough time. I get angry because I have a different radiologist read my MRIs and Scans and they all talk differently with different readings. I asked to sit down with a radio.ogist to review my films and they would not. So much for Emory’s patient family centered care motto.
Thursday at 2am I woke up with the room spinning and started throwing up. Took a zofran and set up in bed for 1 hour and it finally when away. Friday morning I start to get ready and start with dizziness, unbalanced gait and nausea. Went to ER and admitted for 23 hour observation. I was worried I had Mets to brain. MRI and ct scan of brain all clear with no abnormalities. They decided I had vertigo from either inner ear infection, congestion, or the little crystals we have in our ears moved. I am better now with a little dizziness if I turn my head quickly. Home now. Relief no brain Mets but tired of being sick.
Praying and sending positive thoughts to everyone.
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Hartrish- That had to be scary. Thank God no brain mets! What do you do for Vertigo? Is it a side effect from the Gem/Carbo?
Yeah what is up with these radiologists? I am asking to see the images today at my appointment and I want them thoroughly explained. It seems with every new radiologists comes a different reading just like you said Hartrish. I don't get it. Don't they realize our lives, unfortunately, revolve around these scans and we would certainly appreciated getting good info!
I will know more shortly. Blood work in an hour and then we go over CT results. Prayers and love to you all.
Kay
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kaylynne: they think it might be an inner ear issue (fluid, movements of the little crystals in the ear, virus or gabepentin). Doing much better now. Docs said I may never get it again.
What were your scan results?
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hey everyone. Let me start by saying F@ck Cancer! My CT scan from Friday shows that I have significant progression with innumerable lesions in my liver, the largest measuring 5.7 x 7.8. So Xeloda did nothing. On top of that, I have bone mets in my right ribs, right scapula, right hip, upper and lower spine and left ribs. No wonder I hurt like hell. Why didn't the CT scan detect this in February and again mid March when i went to the ER? Are the machines outdated, the radiologist inadequate?? Im still doing the trial but I'm losing hope
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Currently in the hospital now with discovery off brain mets...my worst fear. Starting full brain radiation tomorrow. Bluck! I am feeling better so that is a blessings for sure.
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kaayborg- Dammit, dammit, dammit I’m so sorry. Praying the radiation does it’s job.
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So sorry to hear this, Kaay. I'll be keeping you and your family in my prayers.
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kaylenne and kaayborg, you both are in my prayers.
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kaatlynne: I am so sorry to hear of your news. I pray that the clinical trial is the answer to resolving your cancer. I wish I had the right words to comfort you during this time.
Did you ever have genomic testing done on your tumors? Might be something to think about at this point. Theremight be a mutation you can target.
Praying and lifting you up!
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kaayborg: I am so sorry to hear your news. I am praying and lifting you up. I know this is not what you wanted to find. Praying that the radiation takes care of all the brain Mets.
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Hartrish - I have not had genomic testing done because my previous onc didn't think it was a big deal. Now that I am on a trial, they will do another biopsy and submit it.
Kaayborg - How is radiation going? How are you feeling? Lifting you and all our friends up in prayer.
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Radiation not so bad so far. Still struggling with balance at bit and nausea but I feel things are improving. Hoping to be able to give my 12 year old a great birthday party despite everything. Looking forward to the weekend. Hope you all can enjoy yours fully. Much love to all!
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Hello. My mom had her 1st round of Carboplatin and Gemzer and will have her 2nd round after 2days. She seems to feel a lot better than before. Few days back she was always on 3litres oxygen but today I see her without oxygen for the whole day. Her chest congestion and breathing is better than before. She still is weak, goes breathless if she walks or doesn’t take rest because there is still fluid left in her lung But a lot better than before. It’s a relief to see her improving. I don’t know if it’s the chemo or the steroids to make her feel better and improve her appetite and dyspnea as steroids also improve the condition in patients with lymphangitis carcinomatosis. Everything I read on internet about it looks so awful. She will have her scans after 2rounds of chemo, on 15th of May. Praying to the Almighty with my heart and soul for the chemo to work.
Thinking about everyone of you on this thread.
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Sharjin, glad to read that your mom is feeling better with treatment. We hope that she will do much better in future. My best wishes and prayers for her.
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