Calling all TNs
Comments
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CarolinaAmy, you should be seeing this thread in your favorites if you added it...is it not there?
Aggi welcome!
Ally, thanks for sharing about the precious surrogate, I will definitely add her to my prayers.
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Aggi, I second what others have said--a plan will lower the anxiety a lot! You may be given the choice of whether to have surgery or chemo first. There are pluses and minuses to both. I opted to have chemo first because it would provide a clearer yardstick re whether my tumors were responding to chemo. And, I thought I would have a harder time with chemo than surgery and wanted to get that over with. Other women just want to get the tumor(s) removed immediately for their own peace of mind. From what I've read the order of chemo and surgery does not change the effectiveness of either treatment (Ladies, correct me if this is wrong). So when the time comes know that it is your peace of mind that counts. Not what the breast surgeon or oncologist would prefer.
All through this trust your informed instincts and all will be well. You said that all the research you're doing is driving your anxiety up. Maybe it's time to do other things that can distract you until you get your plan in place. Your anxiety is absolutely normal! Get anxiety meds temporarily to help. We will be here to share in your treatment as much or as little as you would like.
Hugs,
Peggy
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Murphy43 - Thank you so much! I'm already starting to feel so much better now that the train is rolling!
CarolinaAmy - Thank you as well! My oncologist did give me a scrip for Xanax, although I have yet to find the time to fill it! So many appointments!
LuvMyDobies - Yes ma'am, I am a Texas A&M Aggie gal! I'm staying far from google these days! Although to be fair, without google, I never would have found this place....
Meadow - Thanks!
Peggy - Yes, the beginnings of my plan are helping quite a bit. I was not given a choice. I was told that because of my age and TN, that chemo then surgery is the plan.
I met with my oncologist last night, then had a follow-up with the breast surgeon tonight, and we finally have a plan started. I will be doing 4 cycles of AC (every other week), followed by 4 cycles of Taxol (every other week), starting next week, assuming all goes as planned. I'm getting my port placed on Thursday, and was beyond thrilled to find out that my surgeon will knock me out for that, instead of just doing local anesthetic like I've read that some docs do! Yikes! And because I'm clearly a glutton for punishment, I will be getting a cavity filled tomorrow. Ugh!
So, it looks like AC and Taxol is a pretty common TN treatment. How is AC? Since it's up first....Just curious what to expect? Not gonna lie, I don't really "do" medical stuff, and I'm pretty freaked out by the amount of "stuff" that is going to be done to me over the coming months....
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Hi aggiemegs,
I found the first chemo treatment was awful. However, saying that, my second treatment was not so bad. the difference was that my oncologist changed my anti-nauseants, as it seemed the ones he prescribed the first treatment did not work well for me. My oncologist even asked me why I did not call him when I was struggling the first time. I didn't know chemo doesn't have to be awful and excruciating. Don't get me wrong, it still is no walk in the park. I agree with you...it is the fear of the unknown, but take it from me, always call your dr if you are feeling really unwell. Perhaps he/she can do something to help you get through it. Your dr is there for you and they want to help you get through it as best as possible.
I am about a week away from my third treatment and I am not so scared anymore. It does get better.
Ps I also was a glutton for punishment and did all of my dental stuff I had been putting off for years right before chemo. Ugh! But now I have a nice white smile to go with my bright white bald head!
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Murphy - Thank you so much for this! I'm currently thinking I will take the first week off work after each treatment, then work the second week. Hoping this will be realistic! My oncologist also told me that since I never had any morning sickness, there's a great chance that the nausea won't affect me quite as severely. Fingers crossed! And oh man....you're 3 weeks in and hairless already? Ugh! I was hoping it wouldn't happen quite that fast!!!! Going to get me a wig on Friday though, so I'll be prepared
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Ps I forgot to mention it is only 4-5 days post chemo that I feel the worst. After that I gradually get back to normal and about a wk later I feel fine. I am back to taking care of my boys as usual Until the next chemo. I have even heard other women feel no difference at all, just a little tired. Ihope that gives you some peace of mind.
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I lost my hair about 2 1/2-3 weeks after my first treatment. Initially I had hair down to the middle of my back. Right before chemo I cut it to about shoulder length. When I started to lose it, it was coming out in clumps, so I ended up shaving my head. I have to say, I did not find it as traumatic as I thought I would. I want to live and my hair is evidence that I am fighting this cancer with all I have.
Plus, even bald, I still feel beautiful, as you will. After all, it is still us and it is proof we are fighters.
Lots of love and hugs your way. ;0)
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Luv, thank you for letting me know! Did you achieve pathology Complete Response?
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SA8PG, it is great you achieved pCR! I want to follow doctor's advice too. But my radiologist withdrawled his opinion after he learned my surgeon oppose radiation. Now he leaves it up to me to decide. :-(
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ally, it is great you got complete response! I had 5x5 mm residual. That makes it hard to make the call. I fall into what they call "the grey area
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Allydp how did your MRI go today. Was going to post yesterday and then realized it wasn't the 15th for you.
Aggiemegs Welcome, hopefully we will be able to help you with any queries or worries. I had surgery first because I just wanted the cancer out and also that was what was advised by my surgeon but I really don't think there is much difference, if any. I had chemo every three weeks for 12 weeks and then taxol every week for 12 weeks. I found the second and third chemo's were the worse for me but I also think anxiety has a lot to do with it. For the first one I wasn't really aware of what would happen to me but I did by the second and third and the last one was the best because I knew it was the last. For me it was like having a bad dose of flu, aching, tired, anxiety but no sickness. I did have some heartburn. I was given EMEND for any sickness and it was a life saver for me. The taxol was a problem for me with bad neuropathy in my finger and a terrible itch on my hands that nearly drove me mad because it prevented me from sleeping and sharp pains in my legs just out of the blue so I only managed seven but the symptoms do get better with time. Not only that but I had a bit of a reaction with my first taxol but was ok from then on. Some people get diarrhoea and some get constipation like I did so you may have to have some medication for one or the other of that. The thing to remember is to drink as much water as you can. I was told at least two litres per day two days before chemo and for up to a week after to flush out the chemo. I was given dexamethasone and had an appetite like a horse so the only thing that was different was taste. I had my chemo on a Wednesday and my side effects would start on the Friday evening until the Monday. After that I felt as right as rain and was able to work all the way through my treatment except for radiation as in NZ we have to go to the Daffodil Cancer Lodge which is two hours away. It was a wonderful place just like an expensive hotel with people who had all kinds of cancer, not just breast and I must be truthful and say that I never had one side effect all the time I was there. I would drive myself up on a Monday, have my radiation and stay there until radiation on the Friday and then drive home for the weekend for five weeks. Make sure you keep up with cleanliness to avoid any infections and keep away from sick people or kids if you can. You will find that a lot of the ladies will come on here to tell you of their experiences and some you may be able to relate to as you go through this. Good luck but I know you will cope with this and we are all here to help you through it.
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TNBCCat, I had surgery first so there's really no way of knowing if I got a complete response to chemo. I'm praying and keeping my fingers crossed. I'm about two years and nine months out from diagnosis and so far I'm ok per my Oncologist. It's still a struggle since they don't do scans or anything to confirm though. But I'm doing ok.
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Cocker - MRI went well, thanks for asking. I'm hoping to get results today or at the latest tomorrow. It's pending on the patient portal so I know it's been read.
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Phase II vaccine trial at the Mayo Clinic! Very interesting how much research is going into the folate receptor stuff.
http://breastcancermarathon.com/mayo-clinic-receiv...
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ally- praying for good MRI results! 🙏 I'm sure everything is going to be okay! Interesting about folate! I feel like I eat a ton of foods with folate to fight cancer!!?! Now I'm freaked out! Should I be avoiding food high in folate?
Murphy- are you doing chemo first? I had a lot of pain in my breast and underarm area during chemo! I was freaking out the whole time because I though it meant the cancer was spreading!
I read that it actually means the chemo is working tho! And I had a Pcr at surgery so I'm thinking it does mean chemos working! Try to stay postive! Aggie- welcome to group.. Sorry to see another young lady with kids here... Seems to be everyone I log in we have another lady in her 30s with young children. I'm 30 with a 10 month so I totally get it. I did chemo first and had no choice either. Now I'm glad I did because I had a Pcr and that helps ease my mind!
I'm only a few weeks out from treatment and every ache still sends my mind to cancer tho
it's all so hard! Treatment and after treatment! I feel like I have to always be on alrert! 0 -
LillieRose, having a pCR at surgery means your long-term prognosis is EXCELLENT. It's kind of the Holy Grail for TNBC and is confirmation that the chemo kicked your cancer's arse! Your stats are basically now like a very early-stage typical hormone-receptor cancer!! In other words--GREAT. I'm so happy for you!
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Aggie my wife did chemo for 12 weeks straight and only missed 4 days of work the entire time. And my wife does physical work. She doesn't sit at a computer terminal like many of us. And one of those days was really a "hooky" day (she could have worked). Point being I think everybody reacts differently. No, it wasn't a "walk in the park" for her, but the meds they have now make a BIG difference. My wife had had chemo for a different cancer 17 years prior to her BC. She said the difference in the two was unbelievable (a lot easier the second time than the first) because of the meds they have now. A side note to inspire, my wife's prior cancer was a stage 4 lymphoma, which she gave a good old fashioned beat down and survived. You'll get through this and you'll be fine!
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Ally, praying for you girl!!! Please let us know when you find out the results! HUGS!!!
AL, congrats to the wife beating Stage IV cancer! That's awesome!!! She's one tough cookie!
Aggie, I thought chemo would be horrible but it wasn't bad. I never did get sick to my stomach. You'll be okay. Just take the anti nausea meds so you stay on top of things. Also, drink a lot of water. Hang in there and keep us posted!
Sometimes I do wish I had thought my treatment plan out a little more and had chemo first instead of panicking and wanting the tumor out. Like in my above post I'll never know if I had a good response. Well, I guess I will if it comes back. All my surgeon told me was that it didn't change survival rates if I had cancer or chemo first, so I said I want it out. I didn't find this forum until I was done with treatment though. Oh well, I can't dwell or change the plan. Anyway, congratsto those receiving a PCR. That's great!!!! XOXO!!
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I always tell myself i made the best decision based on the information i had at the time. I did surgery 1st based on the reasoning it was so small and not able to be felt. The only good part on surgery first is knowing node status. If i could do it again i would do chemo 1st and push for ultasound half way through to confirm shrinkage or need to change treatments. I am still comfortable with the decision i made.
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Jen, after submitting my post I realized I have talked about this all before. My mind has been clouded lately with all I have going on right now! My tumor was fairly big so I was just like take it out! I didn't know much about TN other than what the surgeon told me. She basically said TN doesn't respond to Tamoxifen or other hormonal therapy, and surgery before chemo or chemo before surgery didn't change the stats on survival, so we decided to have the surgery first. She did tell me we would know the exact Stage and nodal status after surgery and I think I was hung up on that so I didn't hesitate with my decision at the time. When it comes down to it though all any of us can do is hope and pray for the best no matter what treatment plan we decide to go with.
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LUV- if I had my way I would have had surgery first! I wanted the tumor out asap but my BS and Onc didn't give me a choice... I can honestly say I was terrified and barley functioning during my treatment! It's very hard to have a tumor remain in your body when you knows an agressive TN! I think we all do what our docs tell us and pray for the best. Mine did tell me it didn't change survival outcomes... Just that they could switch chemos if one didn't work (which they did and was also scary!) it all sucks.. I've never had any scans and that is so hard for me! I think we all question something about our treatment...
Amy- thank you! I try to tell myself a Pcr means good things but I have a hard time trusting things will be okay... I'm working on being more positive but it's hard....Good luck in treatment! I hope your feeling well! I will say that chemo wasn't as bad you would think! It goes by fast and if you stay active and eat right you should have minimal side effects
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Lillie, I think the odds are in your favor since you had a PCR. Try to just relax and enjoy each day. I think that the reason it's hard to deal with things after treatment is because while we are glad treatment is over, it's kind of like we lose our safety net. We are used to being checked every week or two then after treatment ends we have no appointments and it's like what the heck do we do now? It's hard to adjust at first. I have a hard time around checkup time but I'm not crying over every little thing on a daily basis like I did right after treatment and for a very long time after! If I can get to that point anyone can. Believe me! When I have an ache or cough, most of the time my first thought is oh no what if its an infection?!! It's because I had C Diff three times and that scared me from needing antibiotics. I still think about cancer and get down and out but not as much as I do when I have the thought of something being an infection. It's weird and most don't understand it and I don't either to be honest, because the reality is cancer is more scary but C Diff has given me PTSD. My point is things will get better and you will be alright! HUGS!!
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MRI was clear! Most likely scar tissue, which is crazy to me that it could cause this much pressure. I'm going to give it one more month. If it doesn't go away I suppose I'll see my PS about possibly cleaning it out. He's been wanting to swap my implants and do some more fat grafting anyway, so maybe now is a good time to do all that. Also, bonus, there's no change whatsoever to the benign bone tumor on my sternum. I had put that issue to bed a while ago, but it's always nice to have another look and extra assurance.
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Alicia...so very happy for you. Doing the happy dance for you
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Allydp that's AWESOME news! I can tell you that I had a lung scan a while back and I have a teeny tiny little spot of scar tissue in my lung from a case of pneumonia a few years ago. Doc says it would be too tiny to even biopsy if he did think it was anything. When I move just the right way...it hurts like hell! I guess the moral of the story is never underestimate the potential of scar tissue! LOL!
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awesome news Ally!! I get a lot of zingers and spasms when i bend a certain way- then it will hurt for a few days. My PS took a bunch of scar tissue out and it helped a bunch.
I somehow have a cold which gave me a painful swollen node. Ouch!!
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Ally that is awesome news to wake up to. Thank God for scar tissue. Do something frivolous today that you really enjoy. This is the best news. xxoox
Shari how are you feeling, not overdoing the exercise I hope and also to Arlene. Take exercise in small doses for a while. Can you tell I don't exercise much!!.
Jan how are those mountains. Went to the book shop to get a new book yesterday. Read the backs and put them all back on the shelves, just couldn't find one that gripped me. My daughters and I share our good books, you know the ones you just can't out down, so will just have to wait until they have finished with them.
Well its Friday morning here so I am going to do completely nothing all day and enjoy it.
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Allydp, that's such wonderful news!!
Just had my second chemo today and my team is very happy at how I'm doing. They said my attitude was playing a big part in getting through this well. The MO couldn't palpate my tumor but it's a tough one to feel (WAY back on the chest wall). We are hopeful that it may be shrinking but at lest it hasn't grown.
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Oh Ally! What wonderful news to read from you! (Maybe soon we can read news about a baby
Welcome to all the new posters, and hugs to all that I have been reading, and feel like old friends with.
So much wisdom on this board, - you are all such a terrific support system.
Today has been a very sad day for me, - today was the funeral of my closest friend of almost 32 years. She lost her very brave 9 year battle with pancreatic cancer. I was so very fortunate to have had such a wonderful friend. We met when our daughters were in a toddler group at a local community center. She was an amazing wife, mother and friend. She lived to see her dreams of her daughters weddings, and even to become a "Grandma". Her 9 year survival was well beyond the norm for stage 4 PC, but she handled it with stoic grace and strength. She has been my hero. I already miss her so very much. Thank you for allowing me to use your shoulder.
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