Feb 15, 2014 04:29AM Tarot wrote:
Hi all...new to the thread...I am scheduling my mx to happen in he next two weeks, then chemo begins. So scared. I still can't decide whether to have a TRAM or TE. Anyone in that boat?
Posted on: Nov 7, 2009 06:53AM - edited Nov 24, 2009 06:18AM by Warrior517
I am so thrilled we finally have a place to call HOME here! I was diagnosed w/IDC last year at the age of 39. It was in 2/6 lymph nodes. I was also HER2 and Estrogen Positive.I had dbl mastectomy w/implants. This summer, one of the implants failed. So, I underwent a DIEP procedure w/Dr. Massey and Dellacroce in New Orleans. Great Outcome!! I did TCH for six rounds, rads and a year of Herceptin. I am currently on tamoxifen and Boniva (study).
I just wanted to start this thread for those that had it spread to lymph nodes. I can't tell you how many threads I have read that said "thank God, my nodes were clear"...we all weren't as lucky. BUT I believe God puts people in our path when we need them most. Last year during Rads,I met an older lady(she was there for her hubby) who told me that she was a 30 year survivor and Yes..It was in her lymph nodes! The job of the lymph nodes is to catch that little sucker!
Posts 2011 - 2040 (2,242 total)
Feb 15, 2014 04:29AM Tarot wrote:
Hi all...new to the thread...I am scheduling my mx to happen in he next two weeks, then chemo begins. So scared. I still can't decide whether to have a TRAM or TE. Anyone in that boat?
Feb 15, 2014 04:48AM Jeannie57 wrote:
Tarot, so sorry you are here but welcome. I went through it all starting two years ago, lumpectomy, bmx with TEs, chemo, radiation, more chemo, then the DIEP surgeries. I just got nipples last Friday. It is scary at first and overwhelming but if you just take it one step at a time you will be where I am before you know it. My PS doesn't do immediate DIEP for those who might do rads which is why I had TEs for fifteen months, but each plastic surgeon has his own protocols. You CAN do this. You don't need to be brave or strong. You just need to show up!
Feb 15, 2014 09:21PM RhodyMMM wrote:
Tarot, welcome, and good luck to you! So many decisions to make! I would suggest that you look on some other threads for input regarding which procedure to consider. I did not do reconstruction so I don't know which threads to suggest, but I'm sure others here did. If you find the right threads then you will get into some really good discussions that may help you. Have you spoken to the plastic surgeon to get all your information to help you!
Mercedes, you and I are on very similar paths. I had Taxol #10 yesterday, 2 more to go. I started this part of the battle on 9/6 and with all the complications I have had, I never thought I would see the end in sight! I have had profound febrile neutropenia three times, another bout with severe neutropenia without fever after that, but my counts are finally slowly on the uphill climb. Had to skip Taxol twice to get them back up, which extended the length of the treatments, but doing better now. Counts are lowering, but not like they did with the Adriamycin/Cytoxan. The Taxol is very drying......I also have nosebleed every day. I have learned to NEVER blow my nose! Or Niagra Falls starts flowing! I take aspirin every day because there is strong family history of early heart disease, and I have been watching my platelet counts. I cut back from 2 baby aspirins (81 mg each) to one and that has helped a little. My PCP says that's okay to do. I was taking Claritin to try to open my sinuses because the Taxol seems to cause some nasal congestion for me, but the Claritin dried my sinuses out so much that I was having spontaneous nose bleeds for no reason at all. The air right now is do dry with the heat on....both at home, and more so at work. That does not help. Hopefully soon it will warm up and we can cut back on the dry heat! But my nose just keeps running, and every time I wipe it I get a pink/red reminder that nosebleeds are just waiting to happen. But if all goes according to plan then Taxol #12 will be on 2/28 and I can start looking forward a bit more. Of course then it's time to add the Arimidex. I see lots of people are taking Claritin to help with the bone pain.........at least when I start that it will be spring time and the heat will go off (but allergy season will be starting!)--yikes I can't win for losing! :). For now it's early Saturday morning, the Decadron is doing it's work and I've been up since 3am. We are in the process of cleaning out some major junk from the house, so today I will have the restless energy to do it, but hubby is snoring peacefully right now and I don't want to wake him....he has been so good to me and he needs his rest.
Have a great weekend everyone!
Feb 16, 2014 03:59AM mercedes60 wrote:
rhodymmm, boy, you're sure having a rough time, hang in there we are in the home stretch. I was told by my onco that the last couple of taxols are tough as the chemo accumulates in our system. Today i'm tired and dragging my legs, they feel so heavy soooo i have declared a recliner day even though my mind is thinking if a thousand things to do. They can wait!
When my counts were down from AC i started eating more iron riched foods, ie spinach salads, red meats, turkey, cream if wheat in morning. My wbc is still low.
We will get there i can see the light LOL.
Rhody, i still have surgery at the end of march, the rads so not done yet ughhhhhh
Feb 16, 2014 11:51AM RhodyMMM wrote:
Oh Mercedes, I know exactly what you mean! I am not looking forward to tomorrow when the pain will return with a vengeance. Today was not too bad but I can feel it starting to creep up. The neuropathy is terrible. The doctor gave me gabapentin but I have not started taking it yet, I really don't want to add any more drugs if I don't have to. But I have it if I need it. I know what you mean about the legs feeling heavy, too. Are you retaining fluid? Check your ankles and lower legs by pressing your finger tips in or checking at the top of your socks. If you see an indentation then you might need some Lasix. Especially if it is still there in the morning after laying down all night. I did ask my doc for some Lasix because I was really swelling up, it helped a lot. He gave it to me for three days to get the water off, and then refilled it so I have it if I need it. I actually lost 4 pounds! The Taxol and Decadron both cause fluid retention. It all stinks.....I was just thinking today that I really wish I could take the next three weeks off of work to get through the rest of this, but I need the paycheck. And there is lots going on at work right now that I need to be there. I've worked through all of this. As hard as it has been, it has also been a good diversion. Thankfully my boss is terrific, as are the CEO of the company. Helps a lot, and they know I give it my best. I do find that hot showers are awesome, and any time that I can find sunshine coming in a window I feel like a cat...just want to stretch out! Wishing you the best.......it's almost done! I keep telling myself (and everyone else) that the treatments really suck, but the alternative is NOT an option!
Feb 17, 2014 02:16AM mercedes60 wrote:
hey rhody, the only time i retain fluid is the following 2 days after treatment, my face gets puffy, and i joke with my sister saying these are my "i don't need botox days", also i generally feel bloated with taxol i think its the accumulation also. I drink cranberry juice to help rid the fluids. Last month i had swollen knees but they went down after a couple of days. Right now i am concerned about the red and brown spots covering my legs and the blotchy face, my onco said normal se from taxol, really? I had some age spots or freckles, but this is insane.
Wow can't believe you worked thru your treatment,and glad your boss is understanding, there were days when on AC i could barely walk or think straight. I am retired now fir 5 years, i was lucky enough to retire at age 55 and in quebec we have medicare in place which covers all medical expenses. It is across canada. Everyone is taxed for this care thru your paycheck. But uf someone wants private care its on your own dime.
Well sun is out today, we missed another snow storm from NY, bypassed us, so like you i will sit in the living room sun along with my 2 cats and 2 dogs. lLOL and dream of beaches.............
Feb 21, 2014 07:09AM mercedes60 wrote:
hi ladies hate to brag but I,M DONE with chemo after 4 AC and 12 taxols the first half of my journey complete, next I meet with my sugeon on Mar 11th for what type of surgery and when, I have approx 5 weeks to get this body back in shape and hopefully reverse some of these awful side effects that still haunt me, I look like crap, itchy blotchey skin from head to toe, tired etc., then after surgery I have rads and yes a trip to florida to recoop is in the plans for June. here are a couple of pics from yesterday.
Feb 21, 2014 07:11AM ROAREUS wrote:
CONGRATULATIONS!!! So happy you are done with chemo Mercedes.
Feb 21, 2014 07:15AM Jeannie57 wrote:
Feb 21, 2014 07:40AM ROAREUS wrote:
I finished chemo three weeks ago. They did some blood work today and noticed that my Alkaline phosphatase (ALP), liver function test, is elevated. Normal is 33-97 Units/L but mine is at 144. Anyone with similar experiences?
Feb 21, 2014 09:42AM Xrayalli wrote:
Yeah, Mercedes, great pictures! I start chemo one month from today, on the first day of spring.
Feb 21, 2014 09:58AM Nocompromises2013 wrote:
An elevated alp is quite normal after chemo .... 144 is in the right region - that's why they monitor your LFTs.
My alt started as about 270 ( too much alcohol !!!!!!!). I ceased drinking and during chemo my alt actually fell !! So chemo is less toxic than alcohol for the liver ??? !!!!!!!!
Congrats Mercedes for finishing - feels great doesn't it :))))
Feb 21, 2014 11:25AM warrior70 wrote:
congrats Merecedes! Great pics!
Feb 21, 2014 12:21PM mjsgumbas wrote:
Congrats Mercedes!! Awesome pictures!!
Feb 21, 2014 02:55PM Headeast wrote:
Congratulations, Mercedes! Great pictures!
I went yesterday to gastroenterologist and scheduled a colonoscopy to have a base. This will be my second one, I had the first at 40. Today my ObGyn read my blood test results and told my my results are great, CA125 of 6 and vitamin D is low at 29. Need to take vitamin D for a month, 2000 twice a day, then tests again. This pm went to PS and he was very lleased with the healing, although he told me to not to exercise or move my right arm up (the one with the sutures) for another three weeks. I will see him then.
I also asked about the lump I found in my lower ab and I got different answers: hernia and fat. I will call PCP to make appointment and figure put what that is. The three drs. that saw it told me not too worry but i prefer to at least know if it is a hernia. I feel I am finally finishing tests and going back to normal, a normal much better than before, more thankful about all things and people around me.
Before I forget: GE told me Advil PM is bad and gives you ulcers! Do not take it!
That's all for now, going to bed. Good night!
Feb 22, 2014 01:18AM mercedes60 wrote:
thank you all. Yes it feels great and weird for me, yesterday i wastalking to my daughter about her upcoming trip to london and paris with her fine arts program group and they changed her flight to leave on wednesday and for a moment i was thinking my god thats my treatment day uhhhhhhh , i guess it will take a while to get out of that mindset.
And now to get this body in shape and bloodcounts up before surgery. I should know on mar. 11 what i'm in fir and what my options are i will need some your input ladies i'm sure.
Have great dayxxxxxxx
Feb 24, 2014 02:35AM RhodyMMM wrote:
Congratulations Mercedes! I love that you got to "ring the bell......" I will be done next Friday (as long as my counts hold up, they are on a downhill trend right now." I'm not sure if they do anything symbolically in the chemo clinic when someone finishes, but I will definitely ring the bell on our boat when we get home next Friday. By the way, my ship's bell is engraved "The Good Ship Chaos," it came from my father's office in an old sea captain's house in Portsmouth, NH. LOL
Good luck with your next steps. I had my surgery before chemo (at the time we did not know that I would need chemo). My next step will be Arimidex for 5 years......after a much-needed trip to the beach in early April! Need to treat my hubby (and me) to a much-needed retreat!
Feb 24, 2014 03:01AM Furfriend2 wrote:
I am soooo behind on the posting. Been 2 weeks since my last post.
Mecedes, You go girls two thumbs up, LOL you are so funny. My face is looking better now & I too looked like a teen.
My taste was way off as well & now it has been 6wks since chemo & I can eat & drink most things EXCEPT have to be careful with tomatoe sauce/acidy foods. I am drinking coffee almost every day again and have gained back a few lbs.
I am worry about the weight gain and Tamoxefin as most say you gain around 10 lbs. ye gads! How is everyone's experience with this drug? I have posted on other topics as well on this. Hot Flashes galore for me.
Warrior, hows the RADS going? I've only had 3 so far- in the RADS group as well.
On a good note I have mini eyelashes starting to grown in & the weather is a beaut today!!!!
All the best to you lovely ladies
Mar 2, 2014 08:35AM mercedes60 wrote:
Rhodymmm, did you ring your bell yet! How are your counts? I need to ask you a question aboutyour surgery, you seem to have the same dx as me and i was wondering if you chose to havea double mastectomy or was it your surgeon's suggestion and why. Please do not answer if u want to keep this private, iunderstand. I may have to make a decision soon and need some opinions. Btw are u from NH or Maine.
Furfriend so good to hear from you and it seems like it is going well. I'm now 2 wks pfc and y legs are the worse, feel like i'm dragging cement blocks around, taste is so so, gotta watch the sugar, my sweet tooth is back and sweets taste normal! My skin is still is blotchy, red, brown spots, hair is weird, whitelosing some again, nobriwsor eyelashes and ihave itchy face still.
Well have to goorder supper LOL,i do not cook on saturdays!
Enjoy the weekend, (its f*****king cold here again ughhhhhhh)
Mar 3, 2014 01:48AM - edited Mar 3, 2014 01:54AM by RhodyMMM
Hi Mercedes, I am originally from Mass., but now live near Pittsburgh, PA. Did not ring the bell yet because we have been staying at our house the last few days....currently in the midst of another winter storm, so will get back to the boat probably Tuesday. I will send you a picture of the bell. Thank fully my counts were okay, a little bit down but still good enough for the last Taxol. The neuropathy is nearly unbearable, I think the doctor was hesitant to give me the last dose but I insisted. Now I get a month off to rest and then go back to talk to him about Arimidex. I have serious concerns about that after reading posts in the thread related to that--there is a serious history of heart disease in my family and I have had high blood pressure for a few years. Working on trying to lose some more weight and exercise to get the BP under control. Will also talk with my PCP about his thoughts...I will see him next month.
To answer your question, I did have BMX and chose not to do reconstruction. I had the option of a single mastectomy on one side (had two sites there) and lumpectomy w/radiation on the other (one area of DCIS). I figured that if one was going and there was any chance with the other, then take them both. I never had any doubt for myself. It was my choice, the surgeon wanted to make sure that it was my own decision, but in the end she agreed. In the end I know it was the right decision because of mixups with pathology that later revealed new information. I keep asking DH if he is okay with that, and although he says that he is, I'm not completely sure. But my decision was based upon the following:1. I have never been a particularly vain person, and my philosophy is that "if they aren't mine, I don't want them." I have no problem with anyone who wants reconstruction, it's an individual decision. I have been the same way with coloring my hair.....take me as I am! Although I may change that tune when my hair comes back in. 2. I would rather look in the mirror and know that my cancer is GONE! And I have the battle scars to prove it. 3. I can choose whether or not to wear a bra and foobs....at home I take the weekends off --both from hair and foobs. If I had a single mastectomy then I would probably have chosen recon for the balance. 3. I had so many complications through this journey, I just don't want to deal with any more. Post-op hemorrhage, multiple seromas, febrile neutropenia hospitalizations, etc. I read the threads related to reconstruction and all the complications and I just don't want to go there 4. DH can't tell me if he would like them or not, it's a pretty drastic move for "what if?" 5. Recon won't bring sensation back. 6. Insurance covers mastectomy bras every year....
So......that's how I made my decisions. But everyone is unique, you can find threads in this forum about those who chose to do reconstruction, and those who did not. Feel free to PM me if you (or anyone!) wants to talk more. I am always happy to get to know all of you better!
For now, I will watch this (hopefully LAST!) winter storm that we have coming through. Up to 12" of snow coming again.....hope everyone gets to work tomorrow! I figure that if I can make it in with all the chemo crap, they better be there too....or I will pick them up on the way!
Mar 3, 2014 11:51AM mercedes60 wrote:
Hi Martha thank you so much and boy you sure have been thru a lot, you are one strong lady! I respect your decision on no recon and the thought of my body being hurt again with recon and possible side effects i tend to lean on no recon myself if that is the case.You see i have 2 tumors that were 6cm total on same breast with a positive node, niw the tumors are approx 2cm after chemo. Before chemo my surgeon wanted a mastectomy so i will know more mar.11.
Another snow storm! We've been missing most of them, but its cold here another week of freezing ughhhhhh
Well back to the oscars. Xxxxxxx
Mar 3, 2014 12:17PM Furfriend2 wrote:
Oh yea the Oscars tonight!!!
Work for me is delayed tomorrow, hopefully we won't see 12" of snow as forcasted so I can get to Rads.
I am going to cozy up with a warm blanket & my baby Mac. Stay warm and dry ladies/gents in the north hemi.
Thinking of you
Mar 3, 2014 12:20PM Furfriend2 wrote:
Thank you for sharing your photos they are fantastic! So cool you have a bell to ring!
Mar 17, 2014 03:36AM Megs_here wrote:
Hello Everyone, This is my first post. I have finished treatment for stage IIB at the end of 2013 and now following up with Arimidex for 5 - 10 years. On my last day of chemo I went straight to the hospital ER in an ambulance because of trouble breathing and found that I had both lungs full of blood clots (pulmonary embolisms) I wasn't expect to pull through but I told the ER Doctor that I had just finished 6 months of chemo, rang the bell and blood clots were not taking me out now! He looked at me oddly since my prognosis was so poor and he was doing his best to let me know how serious my condition was. He must of have thought I was not understanding what he was telling me. I understood what he said perfectly I just was not going to give in. I was in Intensive Care and in the hospital for over 2 weeks. So many of the medical people kept telling me that I'm here for a special reason that I should not have survived the amount of blood clots I had. While lying there in the hospital bed I felt under pressure to find that reason I was still here and I still really don't know. It makes me feel that I am missing the big picture of my life somehow. Now that treatment, including radiation is behind me, I have issues with lymphedema, a seroma (fluid that needs to be drained regually) in my chest, numbness in both feet; some in my right hand, an early heartbeat and I'm sure I could list more. I just refer to it all as "the aftermath" like after a hurricane or tornado hits :o) I have not had reconstruction after the double mastectomy. I have no medical insurance since my husband lost his job and two months before diagnosis we could no longer pay for our private insurance and lost it after having health insurance all our lives. After treatment ended I repeated my daily mantra "I am good, I am strong and I am confident." But added "and it's over." I am grateful for coming this far and for the many people who were there for me, medical, friends and family. What I am having the worst time with is that "it is not over." Every day I think of BC; I wake up thinking of it and go to bed at night falling asleep with BC and the "aftermath" on my mind. Before BC I was full of energy, vegetarian and had a healthy and active life. I am a strong person but can not find the peace of mind I knew would come when treatment was over and I had "won" the fight. There are so many of the lingering "aftermath" issues that I can not forget and having difficulty moving on. I'm here to ask for guidance, inspiration, direction anything that you wonderful and I'm sure wiser women have found to deal with continuing with a positive attitude. My friends all say I am the strongest women they know but I am beginning to wonder. Thank you to anyone who answers. Meg
Mar 17, 2014 03:44AM Girlstrong wrote:
Hi Meg, I read your post and have such respect for your strength, courage, and guts to continue fighting. I think that cancer changes us all; the treatments are not for the weak. Also the diagnosis itself will be with us forever. Cancer is not just a physiological thing but an emotional, mental, and spiritual journey as well. Your right, you are here for a reason. Life after cancer is not the same. I think we all think about the big "c" ; I'm hoping that it gets less the further we move out from diagnosis. Maybe a support group for survivors would be useful. Getting back into the routine of living is also important. I'm glad your here. We're all here to help each other. Many blessings...
Mar 17, 2014 04:49AM Headeast wrote:
Meg, you wrote an incredible story and makes me feel you are much braver that you think.
I love your courage and we will be here to share all our successes and overcome all obstacles!
Mar 17, 2014 10:08AM Jeannie57 wrote:
Megs_here, you might want to check out the thread "Why was I stronger DURING treatment than I am now?" also. Very supportive and wise women there. Their posts have helped me a lot.
Mar 18, 2014 03:13AM smrlvr wrote:
Meg, we are brave! And we have to be strong. I am amazed at the number of people who have told me how strong I am. They obviously did not see me as the mess I was for the two months of September and October, 2013. We HAVE to be strong. What other choice do we have? That's what I always tell people. What was I supposed to do? Nothing?
When I was DX, I was looking for meaning and what was he purpose of me getting this diagnosis. I even spoke to a clergy about it. He told me that the reason would be made clear. I don't know if I came up with anything except I appreciate my life much more now and stress very little about the things that used to cause me stress. I know what is important now.
I think the most frightening thing is that we can never get back to normal, and even though we go back to work and sustain relationships with family and friends, things will never truly be the same again. I feel I have lost confidence in what my body can do for me, and I will always be freaked out with any little ache or pain. I lost my innocence. They say it gets better over time. I am still in radiation and I am now looking how to assimilate back into my life and enjoy it. This has taught me none of us know how much time we have so we need to enjoy the gift God has given us. It is hard knowing cancer could be knocking on the door anytime. I haven't figured it out. When I do I will post.
Best of luck to you. The women on these forums are wonderful for anything.. Moral support, information or just to listen to a rant.