Triple Negative Stage IV
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Homehelp
Lots of info on that onclave.web site. Perhaps we will find that light at the end of the tunnel for all of us Triple Negative Metatstic BC ladies after all.
Will read more in depth tomorrow. Thanks for posting it.
Prayers and hope for us all
Rosieo
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there was a typo in my post.. Said wouldn't when I meant would! Now corrected
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pls has anyone used doxil b4,what is the side effect like?pretty worried
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bump
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it seems nothing is working for me so far,tears has been my food for days.it hurts so much that I can't do anything to save my life,remembering my kids at home too breaks my hrt.Am I dreaming or is this all real ?
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Oh, munachi! It should not be real. Oh, I wish I could do something to fix it. Thinking of you and praying for you, but what else? Keep posting. We're listening.
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Also, where are your kids? I do hope close by. I think you need to see them and they you.
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I wish they are with me cos seeing them will help a lot ,I only came to visit my siblings only to notice this challenging times. My family leaves far away from here (Africa). Believing things will be better andled here I decided to stay bk & fight it only to see things the way they are.
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Im so upset. My scans last week were not what we had hoped. Im still NED from the neck down but I have several new tiny brain lesions that could not be treated with CKS. I started whole brain radiation today. I feel like its the beginning of the end...
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Praying for you Lauralind!
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After reading the last few posts I hate to add another unhappy one, but I am feeling so down!! The pain in my upper back and side is getting worse. In the beginning I could get away with taking one or two generic Aleve. Taking four now dosen't work. Dr gave me Tramadol, that dose not work either. Have a hard time sleeping. It is not pain that is not bearable but it is enough to just make your whole day grim. Any suggestions from anyone on here how they best handle it. I also just feel so worthless. Can't get myself to decorate or look forward to Christmas. And I don't know if I posted on here or not that my husband just had a heart attack around Nov 20th. He is still recuperating! Thanks Ladies.
Rosieo
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so so sorry !
Is there anyway to get on a clinical trial
Very high response rate with pdl1
How about the new RNA and PARP inhibitors
Please ask you MO if any of these trial are available
91 year old Jimmy Carter NED from melanoma
They are testing many new drugs , we need the right drug soon!
Let's hope soon, but in the meantime please ask
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Rosieo-have you asked your doctor for ativan/lorazipam? It works as an anti nausea but also helps with depression and will help you sleep. I also found recently that it helps with muscles problems that are exacerbated by stress so it has many uses. I had a severe pain in my neck and the oxycode didn't really help it much but lorazipam and some ibuprofen really helped.
I recently started taking Lynparza/Olaparib and am happy to say that my pain is going down but my fatigue is going up. It seems we always need to learn more about what's up next.
Best wishes
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munachi, lauralind, rosieo, I am thinking of all of you. We all like to read posts with great news and people hip, hip, happy in spite of it all but NEVER hesitate to be completely real. This is the place. We help each other through the best we can and I am always learning.
viceroy, great to hear from you!
Treatment today. 2 more days to feel good, then I'll power through for a few. It's not a bad cycle. Let it last. Let it last.
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viceroy, thanks for your suggestion. I believe I asked my MO for ativan before and he would not give
it to me. I will have to try him again :-)
kaayborg. I am getting carbo and gemzar also. How often do you get it. My MO put me on both of them every three weeks. Did your MO say how many treatments you have to take before he will check you out to see if it is working. :-0
How are your side effects?
Rosieo
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Hey Rosieo....I agree with Viceroy on the Lorazipam. I take 1.5 mg every night to help me sleep. I take 2 mg on the day of and day after chemo, because of the steroids. I could not sleep without it!
Praying for you and your DH!
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Rosieo, I do 3 week cycles: wk 1: gem and carbo wk 2: gem and carbo plus neulasta for wbc counts wk 3: recovery
I have CT of chest, pelvis and abdomen every 9 weeks or 3 cycles.
Side effects all very tolerable. Neulasta works so great for my counts we have not had to add 3 neupogen shots during wk 1, platelets get borderline low at wk 1 but rise a bit rather than drop for wk 2 (the opposite used to happen then suddenly I have a new, better pattern, yay, but no idea why the switch up), my rbc's also get transfusion needed low but I don't have any symptoms of fatigue, dizziness or shortness of breath so I can skip. I get tingly lips on days 10-13. We tried Benadryl with chemo today to see if it stops it. I hate Benadryl so I might go for the lips instead next time, if it does work. Gem/carbo is working great for me but I really don't know how much longer it will last. My day 1 platelets are an all-time each new cycle. At some point I know delays will come or worse progression. There was a gal in my practice who was on it for two years so I can't help but hope to follow in her footsteps. I also get tinnitis and dry sometimes sore mouth but it's not constant and nothing that keeps me from living well.
Can't wait for your scans. I'm rooting for you to join my gem/carbo love affair!
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Hi. Feeling very depressed today, I have been on a chemo break for a while due to low white blood count and side effects of xeloda. I am supposed to be having a scan in a few weeks and the to see the oncologist but my sternum area is swollen again and I feel very tired. I am not in any pain but worried. I keep trying to tell myself there are more treatments yet . Maybe it's the time of year and trying to keep myself bright fot my girls but I feel like I sm losing the fight at the moment! Barbar
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Maybe take an anti inflammatory like ibuprofen?
I have had a few surprises where ibuprofen helped me more than the stronger stuff.
Good luck
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Hi. I have just spoken to the oncology nurse who has confirmed that the cancer is progressing again . I don't have any symptoms though apart from the sternum . I don't feel sick and I am getting all my normal activities done. What really upset me though is she said there were only a couple more treatments . I have only had docetaxol and xeloda . Surely there are more than 2 more ? I am so upset I feel like finishing myself off. Help barbara
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barb
I wonder what she based her advice on. For my part, i'd want to talk to the onc and see the scans. As to only 2 more treatments only I can't believe that. You only have to look at my card below to see I've had more than Four already and my onc says there are plenty more rounds to go and new drugs every year to try.. I have had docetaxel, xeloda, CMF, taxol, Gemcitabine with Cisplatin, Keytruda and in the future there's Eribulin, and a few others I can't remember. So never give up hope. Your loved ones need you
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thanks Bosco. I think it was a weird thing to say. I haven't had the scan yet. It was due for 17th January but they are going to move it forward and the nurse is going to speak to the oncologist on Monday and call me back. Once I have had the scan I will see him again and see what they put me on. They don't see it as urgent as I am not feeling ill. Barbara
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Barbara, I have been thinking of you. I agree that you just have to forget what that nurse says. That was really off! I don't think it is her place to make any such comment. I'd try to speak to your doctor directly as soon as possible (and get scans) just for peace of mind regarding what is next. My onc did not feel it necessary for me to have scans when I was gaining weight (the last I had weighed so much was at liver mets diag.) and panicking but freely offered doing them anyway if I wanted. I ended up taking her up on the offer a week later. She was right but I still have no regrets b/c it did cease the worry for me. There should be many more options left for you and any one of those could be super long lasting for you.
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thanks Kaaborg. I am hoping to hear more on Monday and especially a new date for a scan. Not a lot happens here over Christmas except absolute emergencies but my husband and son are being very supportive and keep reminding me I am not showing any signs of being seriously ill. I haven't yet told my 2 daughters of the seriousness of the condition although they know what I have.love
Barbar
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kaayborg My MO has not given me anything for my blood counts. One week after my last chemo my WBC was 2.9 my RBC was 2.73 and my platelets on 12/16 were 39 and 12/17 they went up to 60. I wonder if that is why my heart pounds a lot when I do a couple flights of steps. I am scheduled for a CT on 12/23 to see if the Gemz and Carbo are working.
Barb and how in the world would that nurse be able to say that your condtion is progressing. She is way out of line. Good luck to you on your scan and pray that it will prove her wrong.
To all you wonderful ladies and fellow partners in this journey, Merry Christmas to all of you. Let's all pray for a cancer free new year. It is possible.
Rosieo
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Rosieo, for sure that is why your heart pounds a lot when you do steps. My RBC has been slightly below 8.0, the number where transfusions are recommended but since I am not fatigued or experiencing shortness of breath I don't need to do them. Have you asked about this? I am always told to call and come in if I think I need one. They tell me it helps a lot. I think you also need to ask about Neulasta and Neupogen for your WBC. As for plateIets, there's nothing to do but delay there. Perhaps that's why they don't have you on WBC boosters, thinking they'll come up as the platelets do with time. I am praying for your scans and for your peace in the waiting.
Barbar, any word from your MO today? Thinking of you.
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Hello all,
I was just diagnosed with regional recurrence after just finishing 8 months of treatment for stage iii. Got back from my 'reward' trip only to find bumps on my chest close to incision site that were quickly spreading to other areas of my chest. Biopsied on Dec 14, and diagnosed two days later. Don't know if I have mets yet (CT and bone scan not until next month due to the craziness of the holidays) but my MO told me I will be treated as if I have mets. I started Xeloda yesterday and am anxiously hoping to find that it stops the spread of red bumps.
I'm not sure if I really belong here, but nothing else seems to fit. Regardless of CT scan results, I'm going to be spending the rest of my life trying to keep this horrible scourge at bay as there is nothing that surgery can do for me anymore.
Hope to learn a lot by following all your posts.
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