Calling all TNs

Murphy43

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.

Murphy43

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)

TNBCat37

Luv, thank you for letting me know! Did you achieve pathology Complete Response?

TNBCat37

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. :-(

TNBCat37

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

Cocker_Spaniel

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.

Luvmydobies

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.

Allydp

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.

Allydp

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...

LillieRose

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!

CarolinaAmy

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!

ALHusband

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!

Luvmydobies

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!!

jenjenl

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.

Luvmydobies

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.

LillieRose

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

Luvmydobies

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!!

Allydp

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.

shorfi

Alicia...so very happy for you. Doing the happy dance for you

ALHusband

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!

jenjenl

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!!

Cocker_Spaniel

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.

CarolinaAmy

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.

Cocker_Spaniel

anotherNYCGirl

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.

Murphy43

Hi all,

Such happy news for all today! CA-so happy to hear they had trouble palpating the tumor! That is great news! Allydp-woohoo go and celebrate!

Cocker Spaniel - enjoy your day of leisure! Ps do u have cockers? I have 2....

Luvmydobies

WooHoo Ally!!! So hall for you!

Amy, sounds like you're doing great! Good to hear!

Another, I'm so sorry to hear about your friend. I'll pray for you and her family. HUGS!!!

Cocker_Spaniel

CarolinaAmy so glad you are doing well. Yes I believe attitude does play a big part in the fight of cancer especially humour. It's good they can't palpate it, a really good sign. Keep up the good work and it will be over before you know it.

Another so sad to hear of your wonderful friends passing. 9 years is almost unheard of with pancreatic cancer so she must have fought very bravely. So glad she got to see and do what she most wanted. 32 years is a long time to have such a loving, loyal friend but at least you will know she is free of pain now and you can remember the good days. Sending big warm hugs to help you through this.

Murphy yes I have my Tessa who is a cocker spaniel. She has a golden and blonde coat and is seriously gorgeous. When my old feller is on late's and I go to the wood shed she is right by my side protecting me. She's such a beautiful girl. THEN, I have Chloe who is a tiny maltese terrier. A different kettle of fish altogether. When she was going through the terrible two's (and believe me they were terrible!!) she would chew whatever she could get her teeth into. Now she is four she sits on the back of the armchair each day so she can see out of the window. As soon as a big dog goes by (and they often do as there is a big park down the side of our house) she screeches at the top of her lungs and runs moaning and screeching from one window to another. If we take her to the Lake for a swim she starts on every big dog that comes along but runs from the little ones!!. The big dogs just look at her as if to say "push off punk" but that doesn't deter her. She is shocking but when she looks at me with her sweet, so sweet, eyes she is beautiful. During the terrible two's I threatened to pack her bags and book her on a flight to America but nobody took me up on the offer!!

Yesterday we took our 14 year old cat Bitsy to the vet as he sounded like he had a cold and was sneezing. $154 dollars later we came away with one antibiotic for him. So for that price I hope to hell it works.

JAN69

Cocker, Oh the fires! The 3 or 4 of the very largest are each about 30 or 40 % contained, I think. The death toll is rising as inspectors go thru the debris. Hundreds of homes and thousands of structures have burned to the ground state-wide. Our air was so thick with smoke we were told to stay indoors. School kids couldn't play outside and some schools even had to close. Our fire season lasts into November. We had a rare bit of rain here Monday/Tuesday. I cleared some of the air. Southern California got a 2" rain in just a few hours. All sorts of trouble with that. Reading. I just finished All the Light We Cannot See which slowed down my household chores. I waited a year for the book from the library system. Just started The Nightingale, but it seems too familiar, like I read it recently. hmm. Always love your doggie stories. I remember your stories about Cloe's trouble-making. So glad she grew up.

Ally, Happy Dance Party Tonight.

Another, I'm so sorry for the loss of your friend. Such a wonderful long friendship you had.

I'm raiding the freezer for dinner tonight. Pork chops and french fries. Fresh tomatoes from my garden. DH shouldn't complain too much, I hope.

aggiemegs

Too sleepy for all the personals tonight, but I had my port placed today! So thankful my doc put me completely under, because I don't handle this stuff well.

Looks like we will be starting chemo next Thursday, and between now and then, I have an MRI, bone scan, and CT scan. She also let me know that if my BRCA is positive, she will be changing up the original plan a bit, and adding CarboPlatinum (or something like that?) and will end up with weekly treatments, instead of biweekly.

Sleep is again calling my name, so I better listen!!! Night