Starting Chemo July 2019
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Deanders, please feel like you can vent as much as you need here! IT SUCKS, no two ways about it. You are going through the nightmare all of us have about this disease. Of course you are upset, and rightly so! I wish there was something specific I could do to help, besides provide verbal support. I seriously hope that switching hospitals and providers helps in one way or another. Don’t despair, but make sure you get real, honest information from your new clinic and MO. Don’t let them treat you as a body, and not a whole person. I know how really frustrating that can be.
Please come here to vent or talk stuff through whenever you need to. You’ll find lots of sympathetic ears here, even in our small group. We won’t ignore you, or belittle what you are going through. We’ll cheerlead from here, but know that we are thinking about you and sending our support.
Feel free to PM me
Diane
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Starr42 - How are you doing? I hope your surgery went well and that you are feeling good!
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Deanders a very big cyber hug from me to you. I'm glad you are switching health care providers. I can't believe that you are still waiting for your biopsy results. That's unacceptable. Also is what you have been told just from a CT scan, or have you had a PET scan ? Do you have a copy of your report? Can you see your report? I'm sorry this is happening.
If you have only had a CT scan i don't know how the doc can be like oh it's 95% cancer. I don't want to give false hope, but did they say anything about the lung nodules being and lymph nodes possibly being due to the effects of Radiation?
I had a CT in late May and it showed a 5mm lung nodule and a medisitinal mass. Then I had a PET scan and that showed no uptake over the threshold except for a few lymph nodes that had a little uptake - likely due to the effects of radiation. The medistinal mass was really just my hypothalamus gland being enlarged from the radiation.
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deanders I don’t have anything I could say right now that would help your heart and mind other than I am here for any talks you need, a shoulder to cry on, a person to get angry with, but most of all love and support. Anytime you need me please reach out and I’ll be here. 💕💕
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Well ladies - had an appointment today with my Naturopathic Oncologist. She was able to go over my results with me - even though my MO STILL has yet to give me any results (more info to fill you in on there). The node in my neck tested positive for breast cancer, so I am officially stage IV. The only thing is that it is now triple negative, which doesn't surprise me because I had my pathology from my initial said that I was ER+ but only 50% and "weak staining". So all the tamoxifen fun I have been having was pretty much for nothing. One bright spot was that the MRI showed NO metastasis to my brain. That's amazing good news. There is no way to know if the lung or nodes in my chest are breast cancer unless they decide to biopsy those as well. They may just start a treatment and see if they shrink - who knows.
There are still so many unknowns but I am slowly gathering the info I need to get me out of tears and into fight mode, whatever that looks like. I am starting nutrition and exercise now, which is why I met with the Naturopath - I plan on fighting this crap from every angle. Once I stop crying.
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Deanders, keep us informed. So sorry about the stage IV confirmation - sucks! I am truly glad, though, you feel you are starting to feel like you are getting some kind of handle on the situation and what you want to do. I think I would seriously want to know if those lung shadows are mets, or radiation damage, but I’m probably not The best source for an opinion on that. I really hope you get helpful and supportive information from the living with stage IV topic members. Seems like they are a great resource.
Shoulders available for tears, as needed
Diane
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Deanders,
I am just chiming in to say I’m so sorry you are having to go through this. I, too, am here for you with big shoulders and lots of love and support. I also wanted to tell you that I had radiation scarring on my lung that does look like shadows when viewed. I know you want to get a definite diagnosis of your lungbut hopefully that is all it is. I also held my breath during radiation.
Please keep us informed. We are your cheerleaders!!
💪🙏💕
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Just wanted to say good morning all. Thanks for the support - it means a ton to know that people who get it are there for me. I have checked the Stage IV threads and there does seem to be quite a bit of info out there. I did find one about Stage IV triple negative but those ladies seemed a little more pessimistic and jaded than I want to see right now. I know the treatment options for triple neg are different and less but I need hope not cynical. In my mind, it just makes it like any other cancer since it doesn't react to hormones, it's just a blob of misguided cells. Which I plan on evicting from my body, one way or another.
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Deanders-
I am glad that you are going to a new center. I think there are fair amount of people on these boards who have gone or do go there so that is good. I'm angry about how the center you were at dismissed what you were saying all along. On one hand, it's nice to have confirmation that your concerns were justified and on the other it's sucks. No two ways about it!
One member who I see post often who has used a Integrated Oncologist and who is TN is santabarbarian She has lots of good advice - so check out her posts. :-)
I am glad you have a visit in a few days at your new center. I hope they are able to see all of your scans and tests and make a plan.
Has anyone given you answers with certainty on the lung and lymph nodes. Did the MRI just do your head and neck (yuck - you are a trooper) or did they do like head, neck, chest abdomen, pelvis?
In any case- according to what I have read I think you could very likely be treated as being oligometastic and treated with a curative intent.
Here is a link to research : https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7219961/
There is also the Triple Negative Breast Cancer Foundation that is a good resource - they have a facebook page BTW.
Also ask your new doc about clinical trials-
xoxoxoxooxo hoping you are having a good Saturday
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Hi.
When I was first diagnosed, MO believed I was stage IV because the cancer had spread to my supraclavicular nodes and I was TNBC. She wanted to prescribe palliative treatment instead of curative treatment. My breast surgeon and I strongly disagreed and I was put on the curative intent treatment - full blown chemo, surgery and radiation. I think it was the right choice because my tumor shrank substantially and nodes are no longer enlarged. It is my understanding that they have had a lot of success pairing the immunotherapy drug keytruda with taxol. MO wanted me to go into a clinical trial with keytruda after surgery but there was not enough cancer cells to test for PD-L1 testing. MO said that she has seen more PCR with stage IV TNBC with new immunotherapy drugs and that there are more treatment options now. I’m on Xeloda now as an extra treatment to prevent recurrence
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Here’s an article on Leronlimab -another immunotherapy drug that may be effective against TNBC. I’m hoping it is fast tracked through clinical trials.
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There’s also Tecentriq that received FDA approval last year and atrodelvy which the FDA approved this year for stage IV TNBC. https://www.fda.gov/news-events/press-announcements/fda-approves-new-therapy-triple-negative-breast-cancer-has-spread-not-responded-other-treatments
So there’s still a lot of hope for us TNBC gals.
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Deanders,
Glad to see you have found some further information and are feeling more in control (as much as we do) of the situation. Hang in there!
Diane0 -
Had my last Herceptin injection today - yay! I am now formally finished with chemo. I do have three masses at the margin of my reconstructed breast that the MO has said are nothing to worry about, but that the plastic surgeon needs to take a look at and evaluate. Don’t know whether I’ll have any revisions, ‘cause I’m ready to be done. Thought I would be more emotional over this day, but I guess not
Diane
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Congrats to you!! Finishing active treatment awesome. I do get not being super happy about it- once I finished radiation 10 days later I had my ovaries out so that was a new round of worry- would the path come back OK and then my first visit post active treatment with my MO I think I realized that unless we get new treatments and therapies that turn BC into curable or a treatable condition with a good QOL, I'm always going to be worried.
That being said my peer mentor said to celebrate all the anniversaries- so celebrate in your own way what ever that is, you accomplished something that was not easy!
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just wanted to say hello and hoping everyone is good! Doing good, next touch up surgery is on 29th and hoping that’s my last surgery then tattooing. Loving this cool fall weather 🙌🏼🙌🏼🙌🏼 I’m hoping since 2020 has been just as crazy and bipolar that we get a lot of snow ⛄️ Trying to get my butt in gear and trying to get off this weight I gained back. I’ve started water aerobics and walking on treadmill at night. So hopefully I will stay with it. Well have a great week! 💕💕
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Oh deanders I am so sorry! I do take heart at all the women on here who are going on 20 years with stage IV. And there are more treatment options coming up all the time. May you be one of those who gets sustained PCR (NEAD?) and does well for decades! I can feel the group hugs and am joining in. I Hope you can feel the hugs as well as we hold you tight.
I came on not expecting all the updates! Today is my one-year anniversary of my last TCHP. What a time to have short hair though! My latest COVID-special haircut is a disaster! jjpope -- your hair looks fantastic! My hair is super thick, and when longer was curly, but has grown back STRAIGHT up, but attacking it with the clippers when the thinners didn't work has left a bit of a horror show. Just in time for me to need a new ID badge photo at work.
I am still on the Kadcyla, having to use a cane now because of the neuropathy (but at least it is bright purple!). I have gotten 10 infusions in. Next will likely be Neratinib. I have to say, the limiting side effect for most people is diarrhea, and I am almost lookign forward to it since I have had such horrible constipation since starting TCHP (I know, I just have to be different!).
Best wishes to everyone!
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Yeslama Dragon Glad to hear the update! I have not had a hair cut yet. I think I am going to get a really good pair of scissors and do something to my hair at some point.
Thinking about you Jessica, hope surgery is easy peasy this week!
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Wishing you all a Happy Thanksgiving!
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Not doing well but grateful I'm still alive. Ongoing Irregular heart rate especially at night when trying to sleep. They prescribed Metoprolol but I don't understand what's going on. The cardiologist just says well "your body has been through a lot". No shit, but can you tell me what's causing this and will it get better? No. I want it fixed, not a pill! Exercise is nothing more than getting out of bed and regular walking because I'm afraid I'll have a heart attack or stroke. I haven't lost the 30 lbs I gained during chemo.
My body feels weird ALL THE TIME! Constant tingling/numbness from head to toe (including my face), rapid heart rate, joint pain. I'm 53 and feel 80.
My meds are Letrozole (for cancer), Metoprolol (for heart), Fish oil (for cholesterol), Calcium and D3 (for osteopenia), and Levothyroxine (for hypothyroidism). I've stopped Letrozole (AI) again for two weeks and feel some relief from joint pain.
My MO says he doesn't understand because my last radiation was in March, my bloodwork looks good, and I should be feeling a lot better.
My family doctor is freaking out because I can't take statins and my cholesterol and triglycerides levels are astronomical. This isn't diet related, it's genetic but the AI is making it worse. What the hell am I supposed to do?
Anyway, thanks for letting me vent!
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Have you/can you see a cardiologist? Have they already had you wear a heart monitor for a while? Have you had an echo post treatment?
Sorry this is happening.
Can you take daily claratin to see if that helps with join pain?
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Hi 2019whatayear
Yes I’ve added cardiologist to the list of doctors, had several echos, wore the monitor three times, once for two weeks. Cardiologist is the one who prescribed the pills. The cancer doc wants me to add Gabapenten (?) but I’m sick of adding pills and doctors every month. I’m just so tired.
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Melmax: I am sorry you are having such a hard time. FWIW, both my SO and MO have said at least 2 years after completing treatment before I can expect to feel like myself again. And that was before we all knew I would need an additional year of the Kadcyla.
I am finding that exercise helps (with the joint pain and stiffness, the lack of energy and the neuropathy), as hard as it is to make myself do it! Also, I am now up to 1,200 of gabapentin 3 times a day, every day because my neuropathy got so bad. I had to ramp up slowly, but it is helping.
I am trying to work full time, but I need at least 10 hours of sleep at night! It is so hard! Also, look on the AI forums. A lot of people switched around until they found one they tolerated better.
Sending hugs!
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I know you are loathe to add on another pill but I would like to chime in on Gabapentin. It helps me . Only side effect for me is it makes me little sleepy which is good because letrozole makes me have trouble sleeping so the combo works.
i take - 100 mg in the evening. It def. reduces the amount of weird sensations that I have from my BMX.
I hope you get some resolution to the heart concerns ASAP
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Melmax,
What an awful time of it your having! I’m so sorry to hear about the heart issues. I was on two BP meds already before the cancer dx, as well as three different migraine meds, so I know how you feel about adding even one more pill to the mix. I too am on gabapentin for neuropathy, though it does not help me sleep. Everyone reacts differently to the meds, so it’s hard to find the one that works. I really hope your docs can figure out something appropriate between them.
Best wishes and hugs!D
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Melmax: I am sorry you're having such a hard time
. I don't have heart issues but I do take a low dose of Gabapentin every morning and night for the neuropathy. I know it sucks to have to take another pill but it helps me big time. I think it also helps w/ hot flashes. It's been a year since my last chemo. Reconstruction surgery went well in August. Thanks for asking 2019whatayear
Thanksgiving weekend my husband & I hiked up a mountain in Shenandoah National Park at night to see the sunset & stargaze. When we got up to the top of the mountain, we toasted w/ hot chocolate. I realized how far I've come over the last year. This time last year, there was no way in heck I would have been able to hike up a mountain in the cold, at night. I unexpectedly got really emotional. I know you all understand.
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Thanks for sharing that beautiful picture!
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Late Merry Christmas to you! Had a really good Christmas. Now ready to sit down and relax from all the festivities and food 😂 We got a spit of snow Christmas morning and I was so excited! We never get snow in NC. I was hoping we would wake up the next morning and have the ground covered in snow, one can wish. I’m doing good and doing well on the tamoxifen. I started back once I got the swelling under control. Still not 100% sure what was causing all my swelling but I think it was a mix of the gabapentin and natural supplements I was taking. Still working and pushing forward. I got my nose pierced, that was one thing I wanted to do after chemo that I never did. I love it, hubby not so much 😂😂 oh well he’ll get over it. I think my main struggles now is being mentally exhausted. But this too shall pass. Weight gain sucks 🤬 the added weight after chemo weight gain. But I’m going to get back on track and my goal is to lose 50 lbs. I did it once and have to do it again and I have been doing water aerobics.
Melmax I’m so sorry you’re having a hard time with your heart and no answers. I also can relate to not wanting to add medicines. It’s like that’s all they want to do is pump you full of meds. My friend that had been through radiation developed heart problems and the meds they have her on I think has helped. I don’t think her symptoms were quite as severe as yours but she seems to be doing better.
Well I hope you all have a Happy New Year! Def hoping 2021 is better that 2020. I miss our chats! Here's a pic of our tree and current pic of us. Thank goodness my hair is back to normal! 6' 180 lbs baby boy in the back. Wearing a size 13/14 shoe. He turns 15 01/14 and will start driving, Not ready for all this growing up!
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Merry Christmas to you as well, and thank you for sharing the beautiful photos! You and your family look so happy
Well, your DH looks about as enthusiastic as mine at having his photo taken 
Glad you got some snow on Christmas. We had the opposite here, with 3 feet (yes, feet -- which is how I like my snowstorms to be measured) a week ago, then Christmas Eve and Christmas day we had torrential rains, so flooding and now not much snow left at all. Amazing how all that snow could disappear so quickly!
I had my nose pierced years ago, but the hole closed up. Some day will re-pierce it. But I have always wanted to dye my hair wild colors, so it is now teal
I am having my last infusion of Kadcyla on New Year's Eve. Seems fit. It has been a long road. And I may start an oral chemo drug for a year for added insurance, but somehow that doesn't seem the same. More like taking my hormone-blocker every day.
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Thanks for posting! Great family picture JJPope! Glad you are doing well YD
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