Calling all TNs
Comments
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Hi ladies. There are so many newbies that I can't keep up.
Greenae absolutely stunning. You look simply gorgeous. I have decided to have some foils placed in my hair this coming Friday in the hope it might give it some bounce. I always had wavy hair and now its straight unless I push the waves back in. Prayers and hugs for tomorrow.
Murphy liver counts fluctuate all the time for so many reasons as so many things can influence them. A lot of people I know take milk thistle so you could try this but I think I would be throwing that water down and cutting out some fat if possible. I wouldn't think its much as your ultrasound was normal for liver. It also won't hurt you to miss a week of chemo, they will probably add it on at the other end.
Shari how are things going. My garden is looking great now its spring and everyday something new pops up or some buds raise their heads as its warmer. Hope the exercise is going well.
Meadow hi honey bunch, how are you doing.
Stupidboobs have you got the result of your tests yet, if so hope they are all looking good.
Jan how are those fires now. Hope you have had some rain. Wish I could send you some of what we had during the winter though I would rather have rain than wind.
TD glad things are falling in place for your dear mum. Keep going, all will be well. I loved my port so hopefully your mum will as well.
Will catch up with the new ladies later. Have a good day ladies and laugh as much as you can.
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Hi Murphy
I drank a lot of alkaline water & like Cocker said Milk Thistle tea to help detox & support the liver. Don't be afraid. It sounds like your Dr is on top of everything. Our numbers are all over the place through chemo. 😊
I finally have a recon surgery date. Whew!!! Jan 18th. Dr's say no way to implants re attempt with that nasty infection that lasted 6 months. Only Diep flap. So as it gets closer I'll keep you posted. They are doing a ct of the abdomen over a concern that when I had my appendix removed years ago they cut through the vein they need for the right side flap. When they did the ultra sound they couldn't hear the sounds they needed. Anyone else have the Ct for this?
Hugs
G
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i had a ct before diep, they are trying to map the best veins to hook up. Here for you if you have any questions PM me.
I have to have my kidney stone blasted. Ugh.
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murphy, I had crazy liver numbers too. Did you by any chance get a blood transfusion or iron? Mine never got high enough to postpone chemo but they threatened it a few times. My bilirubin was high many times, then my AST and ALT and all those other liver stuff. So frustrating. Eventually the dr and pharmacists said that it was prob due to my blood transfusions that I had. But the numbers did go down regardless. They told me to drink a lot of water to help flush out my system!
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Hi there, let me introduce myself a little! I've been posting on the YSC boards since my dx but decided to jump over here too as it seems a bit more active! I am TN, I was dx'ed in June, started neo-adjuvant AC in July. Currently on weekly round 4 of 12 Taxol. Looking at surgery (BMX not sure about which reconstruction) mid-January. I am married (9 years today actually!) and we have a 4 year old son who I will see grow up!
Looking forward to getting to know everyone and travelling this crazy messed up road together!
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Welcome Julie. Sorry we are meeting in these circumstances but You will find lots of support here. Great group of ladies and men. Your almost done with treatment. Yay!!! How are you doing?
Congratulations on your 9 yr wedding anniversary 😊
Hugs
G
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Arlene - good luck with you check up, thinking of you but I'm positive it will be all fine. your hair looks fab btw.
AnotherNYCG - good luck on Friday. I don't have any experience on liver counts but im wishing you all the best.
Pea brain - I had a week off due to low neutrophils/ white cell count in the middle of the treatment. I felt so much better afterwards and then I never had another week off throughout my treatment, so maybe it's a good thing.
SA8PG - I'm having a mastectomy with immediate DIEP reconstruction next month. I had the CT scan of the abdomen (this is standard practice for my surgeon) and he said he was happy to go ahead with op based on the vessels he could see. They did see nodules on my liver which they suggested getting checked out but it turned out to be nothing.
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Hello Cocker, I am doing well, I go tomorrow for my regular 3 month check up. I have no concerns so I expect a good report. Love you!
Julie, Welcome! We all wish you a Happy Anniversary!. And yes, we will walk this journey together.
Jen, so sorry about the kidney stone! I understand they can be miserable...Hugs!
SA8PG, I am happy for you to have your recon date. I do not want to stir anxiety, just curious, do you worry about the diep since you did have problems with infection? What did your team say? Sending you my best.
To Steph Cassy Murphy and everyone else, hugs to you all
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SA8PG-I am doing pretty good all things considered, thank you for asking. I tolerated AC fairly well and taxol has been pretty easy so far. Mostly just fatigued, I am still working full time, only taking Fridays off for treatment.
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here is my intro- I was diagnosed with invasive ductile and one intramammary lymph node in July 2015. In August 2015 I had bilateral mastectomy, no reconstruction. I started chemo sept 28. I am supposed to be in dose dense every 2 weeks for 16 weeks, but my second session was delayed a week due to white cells. I am not totally triple negative but almost. I am ER negative, and HER2 negative, and my PR is 34-40% positive.
I live outside Philadelphia with my husband and 2 cats. We have 4 children from 20-30 yrs. Right now, for a year or so, our 27 YO daughter, our son in law, and our 1 yr old grandson are living with us. That is a great blessing, we enjoy the baby every day. They moved from Pittsburgh to here so my SIL can pursue a PhD at Drexel. We didn't know about the cancer when they asked to move in, but I'm glad they are here. Gives me something good to think about.
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Jen & Cassylou thank you so much for sharing that. I was concerned with getting more radiation after all the scans we've had. Makes me feel better to know you guys have had it as well.
Meadow I am def nervous about the Diep. I asked Dr about the recon. He said worse case scenario if I got another infection it would be easier to treat than with expanders. My expanders were like a breeding ground for that bug to multiply rapidly. I've been taking probiotics several kinds actually trying to heal my gut from all the antibiotics. This is the first time I have felt good since this thing started back in August of last year. Everyone's prayers & well wishes much appreciated.
Julie that is great news that you are still working. Continuing to send you lots of love as you finish up treatment.
Hazel welcome as well to the group sorry you are here as well. Crazy cancer!!!! Please keep us posted as your treatment progresses. Enjoy your grand baby. I look forward to those days in my future.
Hello to everyone else too.
Much prayers, love & hugs everyone.
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SA8PG - so happy to hear the recon date is in the books!!
Cindy - my liver functions went a little whacky at the tail end of chemo. However, I missed a week as well due to low blood counts and still had a complete response, so don't worry about missing one. Hopefully after lots of fluids and the week off your values will bounce back.
Welcome to all the newcomers.
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Hi all! Got my PET results today. The chemo was working just enough to keep the disease stable, but was not shrinking it; actually each node grew slightly by a few mm, but doc said that was not much. We were not surprised by this given the initial response I had to chemo. Good news is that the disease is still contained in the 3 nodes we knew about, and has not spread! While we would have liked to have had a better response to the chemo, we are happy with what we've got. My husband and I said as long as it has not spread, were good. And we got that news! I'm stopping chemo and going to radiation ASAP. I've been told that radiation is the powerhouse that will knock this out of my nodes. So, on to the next step
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Ah Ladies (and men) I love love reading all of these encouraging words! I am currently at school right now at my "work study" job so I have a chance to get caught up! Sounds like it has been an interesting week for everyone so far!
Georgie- thank you for the kind words! I know my mom doesn't want to see me break down, but I don't want to see her either. It is easier to cry here at college because she isn't around. I am heading home this weekend to see her, give her a few gifts, and to help get the house ready since she starts chemo this upcoming Wednesday. I think we are all ready to get this show on the road. Her co-workers are so supportive and have gathered a little bag for her (she doesn't know that yet). Besides that I am just at college trying to make it until December.
SecondChance- I am sorry that the chemo isn't being a big trooper and kicking the cancers butt! But I'm sure radiation will kick in and continue to heal you!
I have had a lot of time to think over these past few weeks and I just want to say that I am so blessed to be able to have a group like this. I was at a loss when my mom told me that she had cancer. That word just seems so bad. My poor cousin has lost both of his grandpas to cancer, so when he found out my mom had it, he tied death to that. My aunt had to remind him that "Auntie Jo" isn't going to die. All of you women are fighters, but I have come to realize us as caregivers are fighters as well. I will do anything in my power to make sure that my mom is comforted, relaxed, taken care of, and positive through all of this. So if you ever see a news story about a daughter knocking out a doctor that is me
JK! But for real, I will bend over backwards to make sure that my mom is going into this with no worries. She has a strong faith and I am so glad for that. Her God is a healer and I know that he will not put more on her than she can handle. I have been crafting lately and I plan to make her a pallet with this quote, and I think it is a good quote for us all!
BE STRONG AND COURAGEOUS. HAVE NO FEAR AND DO NOT BE TROUBLED FOR THE LORD YOUR GOD WILL BE WITH YOU WHEREVER YOU GO. JOSHUA 1:9
You are not in this alone, there is a stronger power than us all who is watching over you and your families. We can find a cure, all we have to do it believe.
Made this for my mom- she has always told me to believe that things are possible and that everything happens for a reason. Now I get to remind her.
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Terrified - very inspiring post. Thank you! I do believe, and that is part of what keeps me strong! I believe that despite the curveballs that have been thrown at me during this journey they all have been for a good reason. Also, despite a long hard road, I believe I am going to come out on top! You are a wonderful supportive daughter and your mom is lucky to have you on her side!
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@Terrified Daughter: Your mom and you are beautiful. Best wishes to her. I just had my 3rd treatment of TC last Friday the 9th. I have an amazing daughter probably about your age standing by me thru my journey as well.
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TD, that is my fav scripture, I just shared it on another thread to encourage someone. I have it in a little frame in my kitchen window. "Have I not commanded you? Be strong and courageous. Do not be afraid, do not be discouraged, for the Lord your God will be with you wherever you go." It comforts me and strengthens me!
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TD & Meadow
Love that one as well. I love your creative mind TD how blessed your mom is to have you. Same for you lovelife BR to have a daughter standing with you in the storm.
Keep pressing on.....
G
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Hello All!
So I am home! Not with good news though. My mom will be starting her chemo cocktail on Wednesday which it is Taxol and Carboplatin. This is usually given at the end if I am not misinformed. So we are a little nervous since it will be so tough. Also she found out it is inflammatory. This is a concern. I put a topic out there called TNBC and IBC just to see if I could get some more info. But if you ladies have any PLEASE SHARE!! This is something that I know my mom could use some comfort in!!
Hope everyone is having a wonderful day!
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TD, - chemo regimes are often different for different people, and often given before surgery, too! Your Mom WILL get through treatment ok!! I think the anticipation is worse than reality!
As long as she eats carefully and allows herself to take it easy, - she will be fine!
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Hello everyone. I have poked my head in and out over the last few years. I appreciate the sisterhood and support that I always find here for myself and others. I wish I could send a personal note to each of you. But I am still groggy from my stage 2 reconstruction (DIEP) a week ago so I will just respond to a few names that I can remember-but I am holding you all with me wishing you health peace and well being.
Julie, I feel for you. It is hard being diagnosed at any age but 34 is really young to have to deal with all of this. If it gives you any hope, I was 35 when first diagand pregnant with my daughter who is turning 18 this year and I'm looking forward to her high school graduation. I went on to have a second child even though I was told chemo had left me infertile. I love the fact that my two children are real miracles and that I have beaten some of the odds. But then all children are miracles!
I also had to delay chemo two times during my 2013 chemo for a second small primary tnbc due to elevated liver functions. My liver functions are back to normal and the treatment was effective.
Terrified daughter, you and your mom are lucky to have each other. Carbo and taxol is a treatment that works well for many of us. I did it at age 52 and found it very doable. I will be wishing your mom the best as she starts treatment.
Sending love and support to all here.
Deb
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TDaughter - Don't fret about getting TC first. I don't believe it means anything is worse - just a difference. I thought AC was the hardest of the 2 , but not by much. Pretty similar. I'm afraid I don't have any answers on the inflammatory dx- other than I know plenty of women who have been treated with IBC and are doing fine. It is all so scary, but just starting chemo on Wednesday will get the ball started towards beating this blasted disease. xoxo
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TD, I am also Inflammatory (IBC) and triple neg (TN), and my favorite letters of all, NED! (No Evidence of Disease) NED for almost 2 years. Your mom can do this!
Deb, Welcome!
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TD, I also had Taxol and Carbo and found it pretty bearable. Definitely wasn't fun but got through it better than I thought I would! Your mom's got this!!
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TD, I also had taxol/carbo and found, like StefLove, that it was very tolerable. The dreadful anticipation is hard, but often the worst part of treatment. Hang in there. And check in for some feedback and support. Love to your mom. We've quietly got her back in here.
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hi all, 2 yrs since dx (10/18/13). 1-3 yrs is the critical years and then less and less chance of recurrance till 5 yrs. please let me and all of us get to 5 years!!! Yesterday on my cancerversary I was fly fishing with CFR retreat in upstate my (Pulaski for those of you that may know upstate my-salmon River right near Lake Ontario). 1 1/4 hrs from my home. Definitely something new for me which I now love trying new things. For those that may not know it is a free retreat that has 40 sites in the us in 35 states and starting overseas, I think Australia has one. Check it out. Everything is included! It was amazing, support, education, outdoors, exercise, new learning,friendship etc all those things we need as survivors as much as the medical treatment. Here's some pics. Not quite Brad Pitt from a River runs through it...but hey I tried! anyone flyfish!wow its a science and skill!
14 women and we had private water time which is a t a premium at this time of year and each had our own fishing guide (also known affectionately by some as our River boys, or River studs, or River muffins)
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Lisa - love your pictures!! You have a bright and beautiful smile! And I literally laughed right out loud at your Brad Pitt comment! Too funny! The retreat sounds absolutely wonderful. As widespread as breast cancer awareness has become, I'm always saddened at how little support is out there for survivors. I'm so glad you were able to experience something like this! Thanks for sharing!
TD - I'm sorry to hear it's inflammatory, but glad she'll be starting chemo soon and blasting those cells! I also had Taxol & Carbo, so lots of us here can offer you and your mom support.
Cocker - how's your husband doing? Hope he's still on the mend!
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TD my wife had Cisplatin and Taxol. Cisplatin is a similar drug to Carboplatin. She also had had Adriamycin 17 years prior and said this was nowhere near as bad. Keep the faith!
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hi I was found triple negative July 2015. I am 59 and missed my mammograms why is a very long story but I did get my Gyn appts and requested gene testing which he declined on more than one annual visit. I feel if I had the gene testing which they did for me now done when I requested it I might have paid more attention to my self and got checked sooner.
I have Variants of unknown significance ( VUS) whith two related to genes that control BRCA functions so I am not happy with the little research on VUS here in the US
I received taxol 10 infusions missed one because of low WBC and rash on belly then I asked to skip the last which would have been 12th because the peripheral neuropathy was progressing into my hands. I really want hands. Feet are just a bunch of crumpled socks
Does anyone know when the neuropathy stops spreading?
Also, does anyone one know when hair stops falling out after finishing taxol?
I am scheduled for adriamycine and cyclophosphamide(AC) tomorrow
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