Triple Negative Stage IV
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sharjin: I am on carbo and Gemzar now for liver mets. Brought my Tumor marker down from 3580 to 122. Last mri showed stable disease. Side eff3cts minimal: constipation, some muscle pain for a couple days, low WBCs and absolute neutrophils which I take neulasta. Hoping I can stay on these drugs for awhile, if not, will try next drug.
I know it is hard and a roller coaster ride. Hang in there. Praying for your mom, you and your family.
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Hi. I am not triple negative, but I wanted to say to hartrish, kaylynne, and kayborg that I am thinking of you three.
Don't know if you are still posting on Liver mets. thread.
Anyway, may the force be with you. Best, MJH
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kaylynne, after you did your new treatment you have to go into settings and make it public. Weird two step process.
Still doing well here. Gosh, I do hope this one lasts a while. My leg swelling, though not completely gone, does not cause any pain or discomfort. This has made all the difference. Had chemo as scheduled but platelets were at their minimum so I do wonder a bit how they'll hold out going forward. I do like this chemo combo much better over the immuno/chemo as far as side effects go. Aside from my still massive belly (I get daily congratulations on pregnancy from adults and children alike now), I am feeling near normal. Trying to enjoy it and not worry.
Sharjin, I did great on gem/carbo, then carbo alone for a total of two years. Let us all find what gives us good time and life quality.
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kaayborg: glad your combo is working. What are you taking now, Gemzar and
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MJH: thanks for touching base. Nice to hear from others
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Kaayborg-Thanks for the tip! What do you say when they congratulate you on your pregnancy? I would probably just go with it. Once I quit gem/carb, the swelling went down in my face and left arm. It was definitely a reaction to one or the other.
Xeloda is so convenient! I love not having to go in for IV chemo. I am praying that this works for a very long time. I am 7 on/7 off and I have noticed liver pains when I am not taking the Xeloda. I've only completed one round of 7 days and will start again Thursday.
MJH - Thanks for checking on us. I do post some on the liver mets but I don't have much to say these day. It's all just wait and see. I am on a FB page for Stage 4 and somebody posted, "Stage 4 cancer is like playing Wack-a-Mole blindfolded." Isn't that the truth!?
Love to all
Kay
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Gemzar and cisplatin, a sister drug to my buddy carbo. Love those platins. Gonna try to add some comments to my signature since it wasn't in the list.
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kaylynne: I know from the liver Mets thread you are having pain on your off week of Xeloda. Here is some information about Xeloda that might explain.
“Chemotherapy drugs that affect cells only when they are dividing are called cell-cycle specific. Chemotherapy drugs that affect cells when they are at rest are called cell-cycle non-specific. The scheduling of chemotherapy is set based on the type of cells, rate at which they divide, and the time at which a given drug is likely to be effective. This is why chemotherapy is typically given in cycles.
Chemotherapy is most effective at killing cells that are rapidly dividing. Unfortunately, chemotherapy does not know the difference between the cancerous cells and the normal cells. The "normal" cells will grow back and be healthy but in the meantime, side effects occur. The "normal" cells most commonly affected by chemotherapy are the blood cells, the cells in the mouth, stomach and bowel, and the hair follicles; resulting in low blood counts, mouth sores, nausea, diarrhea, and/or hair loss. Different drugs may affect different parts of the body.
Capecitabine belongs to the category of chemotherapy called antimetabolites. Antimetabolites are very similar to normal substances within the cell. When the cells incorporate these substances into the cellular metabolism, they are unable to divide. Antimetabolites are cell-cycle specific. They attack cells at very specific phases in the cycle. Antimetabolites are classified according to the substances with which they interfere."
So during your off week the cancer cell may be trying to divide and the Xeloda is killing them. Might be why you have pain during off week. I would think cancer cells divide at randomn times and not only during your on week.
Source: http://chemocare.com/chemotherapy/drug-info/Xeloda.aspx
Just a thought.
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Ah thank you so much hartrish. I am hoping that is what's going on. My blood work today showed my liver enzymes are lower! Woot Woot!!!
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I had a wonderful time on my Norway trip. But I am being plagued by intense, chronic left shoulder pain. My orthopedist suggested the tumors might be pressing on a nerve, referring pain to the shoulder. I did some research and yes, the phrenic nerve goes right through where my lymph node tumors are. I was supposed to consult with a radiologist last Friday, but when I went they hadn't obtained the disk with the CT films. So I had to pick it up Monday for a new appt yesterday. Due to a water main break affecting the whole county, they closed their offices early but asked me to drop off the disk and he'd call me back. I called them in the afternoon and they said he wouldn't get back to me until Friday! Very frustrated that nothing is moving along. If he can't radiate the tumors I need to know so I can plan my next step. The tumors just keep growing and I'm in wretched pain, plus they're right by my aorta which concerns me. I'm considering surgery, but don't know if I can get someone to do it.
So sorry to hear about TexasRose. Hope you all are doing well with your treatments!
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I had nerve pain as well. Put me on Gabepentine and seems to help. Waiting for TMs to come back. Hopefully stable. Next MRI April 10th
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I talked to the radiologist and he says he can't do anything, the tumors are too close to my heart. And if they keep growing unabated they will damage my heart and aorta. I have an appointment with a surgeon Tuesday, the same one that did my lobectomy. Hopefully he'll agree to take them out.
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minxie:sorry to hear your news. I hope the surgeon can remove the tumors. You are in my thoughts and prayers.
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kaylynne: how is the Xeloda going?
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kaayborg: hope you are doing well. Any updates?
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so my last MRI showed stable disease but my tumor marker at that time jumped up to 132 from 122 so I was worried that carbo/gemzar might not be working. Had repeat TM this pass week and it dropped to 95. First time in double digits since treatment started (was 3580 at start of treatment). So thankful that the TM dropped some more.
Also at the start of treatment I had no liver pain. About the last 5 weeks I have pain in my back and front liver area and pain that radiates to right shoulder. Probably tumor pushing on phrenic nerve. They put me on a steroid challenge thinking inflammation and gabepentine for the nerve pain. Front liver pain better and shoulder pain better but still have some back liver pain.
Liver enzymes are normal except alkaline phosphatase that bounces around from normal to elevated about 10-15 points. So just watching right now.
Next MRI is April 10th so hoping for tumor shrinkage and less diffuse cancer since TM has decreased some more.
Praying and thinking about all of you.
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minxie-I hope the surgeon can do the surgery and relieve your pain.
Hartrish- I thought xeloda was working but after a month of treatment, both my liver enzymes and tumor markers are up quite a bit. We will run them again on Wednesday. I’ve not experienced the hand-food syndrome, thank goodness but I have had liver and shoulder pain like you and minxie. So far I’m just dealing with it and taking tramadol when it’s unbeara. I’m praying the effectiveness is only delayed. I hope your next MRI supports your liver enzyme stability and shows no progression.
I’m thankful spring is around the corner. I always feel better, at least mentally. Love and light to you all.
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minxie: what did you learn at your surgeon appt? I have been praying and thinking about you
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sharjin: how is your mother doing? Did she start the carbo/gemzar regimen? This regimen is working well for me
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hartrish, May I ask where are you getting the treatment in Marietta and your doctor name. I am in Lawrenceville,GA and would like to know if possible.
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usern: I am getting treatment at Emory. Dr Meisel. She is a wonderful doctor. I find the Emory system convoluted but love Dr Meisel. She is so responsive to me.
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Thankyou hartrish.
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usern: where are you currently getting treatment
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hartrish, I am writing on behalf of my aunt who just passed away about a month ago, she got the treatment at the East Side hospital in Snellville under Ravi Sarma and I would say never go there and never visit this oncologist.
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I am so sorry about your aunt. Lost for words. I will be praying for you and your family.
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The surgeon said it was unlikely he could help me but ordered a PET. The PET was very bad, lots of new lymph node tumors in my chest and in the pleura. I have a sizeable pleural effusion which will be drained Monday. My oncologist is trying to get me on the IMMU-132 trial. Hope things move fast, this cancer is exploding. My shoulder pain continues unabated. Miserable.
I live in GA and see Dr Alizadeh at GA Cancer in Decatur. He's been wonderful.
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Kaayborg, haven't heard from you in awhile. How are you doing?
Hartrish, how are you feeling?
I'm experiencing bloating and upper abdomenal pain that radiates through my left breast into my shoulder. It got so bad that I went to the emergency room. Everything checked out fine except my liver is full of tumors. My tumor markers and liver enzymes are increasing on Xeloda. I've had 3 weeks worth with a week inbetween. Onc want to wait until I finish one more dosage to see if it stabilizes. I feel like I have cancer now. Before, it came and went but now it's staying. I hate this so much. Onc gave me oxycodene and it helps but makes it difficult to work and I end up with a headache after it wears off. It hasn't even been a year since diagnosis.
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There is a clinical trial to to get personalized treatment recommendation for the patient based on
Personalized Molecular Profiling in Cancer Treatment at Johns Hopkins
clinicaltrials.gov/ct2/show/NCT02965755
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Now they don't think I'll qualify for the trial because they want you two have failed two prior lines of treatment in the last 12 months, and I've only failed one, Xeloda. I asked my oncologist the big question, how long do I have. He said maybe two years. Not sure if that's with or without treatment.
He says the next thing he wants to try is IV chemo. A taxane and carboplatin. I did Taxol (along with adriamycin and cytoxan) 8 years ago. I wanted to die I was so sick and miserable. I don't know if I can do this again. I couldn't work I was so sick, nausea, diarrhea, extreme fatigue. Now I have no choice - different job, crappier benefits, I'll have to work. I need to keep my insurance. I hate that this is my only option. Just the thought of walking into the chemo room brings my PTSD back full force. If you have done this TX for metastatic TNBC, is it as awful as it was? He wants it 1x a week. Again, I don't know if I'm up for it. Maybe I should just give up and die. I am not in a good place mentally. Just have to make it to May 24, my son's high school graduation.
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minxie- I won’t lie. The AC chemo was the worst but because my employer was kind, I was allowed to get chemo on Thursday and take Friday off to recuperate. That helped. I took it every other week. The Taxol didn’t have as many side effects. I was tired mostly. The same with gem/Carboplatin. Do you have sick leave available? I know how hard this is. I’ve blown through 3 IV chemos and now on Xeloda which I don’t think is working. If I were you and had to pick one just so I could do the trial, I’d go with Taxol. Look up the side effects though because it’s different for everyone. I’m so sorry you’re going through this.
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