Starting Chemo in Nov. 2011...anyone else?
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I know what you mean about more medicine, don't want it! Have to start tamoxifen soon.. That's all for me hopefully.
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"A little disappointed today, had my mammo/ultrasound done to see how much my tumor shrunk after all that chemo, but not much change is what I got, I guess it's better than it grew, right?"
Julie- I have a story for you that I think you will appreciate. I was diagnosed back in Nov. 2011 with a 3.5 cm mass. I opted to have neoadjuvant chemo and the infusions were to begin January 2012. We did another baseline US and it came back with a measurement of a 4.3cm tumor - let's get this chemo going, right!? So after 6 weekly Taxols (1/2 of the intended 12), we got another US. This time it came back at 6.5cm!!!! I couldn't get scheduled for a lumpectomy fast enough! I wanted that "non-aggressive, hard to find," lobular lump OUT. When the pathology report came back, the medical team and I were all astounded to learn that the mass was only 2.2cm!!! The chemo was working, it had shrunk the original 3.5 cm mass - whew!
All that said, our medical community has come such a long way in diagnosing and treating breast cancer but methods of measurement are not yet that reliable IMO, and based on my experience. Mammos detect, US are unreliable, MRIs are over-sensitive. There's no definitive way to measure until they get in there and take it out.
I hope this will bring you some peace of mind in the days ahead.
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Tipnas,
I am so much better with the tamoxifen. When I first went on it, I felt emotionally out of control- Very depressed. I also had hot flashes. The good news is that the depression is much better, my emotions are in check and I have very few hot flashes. It has been about 4 months since starting. Hopefully you will have minimal SE and any that you do have will dissipate like mine have.
Susan
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Morning all,
Beth so glad that surgery is over and you have much to look forward to. The Carolinas, I am jealous, that is where I think of retiring if I ever get my kids out of high school never mind college.
FL Islander, good job advocating for yourself. Even if we have wonderful medical people woking with us, we are our own best advocate. Yesterday they were scheduling an echo to resume herceptin and my herceptin infusion. The scheduler could not get them on the same day and I drive about an hour to the hosiptal. Echo was a Wednesday AM and infusion on Friday, my thinking is not real clear after AC, so I would have gone with it. My cousin was with me and insuisted on the way out we went to the echo testing place and I got the echo scheduled for the same day as the infusion. Timing will be tight, but the medical folks will live, I have done some waiting for them.
I had my last AC yesterday and it went very smoothly. I have a cousin who comes with me and we were talking about why I didn't want to go for the last treatment. Duh cuz the third had some BUMPS in the road and was a very emotional day. So of course I didn't want to go back. She told me yesterday she went home and curled up on the couch after my third and she is a NP of 30 years, knowlegable and very clear headed, so if it wore her out my reaction was more than understandable. I go for my radiation mapping on May 30th and that will be followed by 6 weeks of rads. I begin the remainder of my herceptin 13 treatments spread 1 X every three weeks. So I feel like I can see the light, not worried about herceptin but will be glad when rads are started and over. I am feeling reasonalby OK this am Slept 12 hours and will pace myself thru the day. My dd is in her schoolplay last night (Imissed it) and tonight . So I am going tonight. Someone sent me a dinner last night with a cake included, I am mother hear me roar. It will be my contribution to the cast party tonight.
It is already warm and beautiful this AM here in Mass. I wish the same for everyone . Enjoy the weekend.
Gentle day
Nel
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Nel, Congratulations! All done with Chemo! I hope radiation is easy on you.
Sue, I was happy to hear that your SEs with Tamox is lessening. I've been on Femara about 7 weeks and so far I've had very few SEs. I hope your SEs continue to diminish and eventually disappear.
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Tipnas and Csquared, thanks for the reassuring words, I can't wait to get this thing out of me so I can finally feel truly cancer free!
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Julie's latest post reminded me of this question I think of from time to time. I have heard people say they have been cancer free for a year, 5 years, etc. I am wondering when exactly does that time of cancer free start. For example, the first thing I had was the surgery to remove the tumor. Then the chemo and rads came after, and I may or may not have had any cancer left. I understand that some people have the chemo first to shrink the tumor, then the chemo, etc. So how do you know when to start considering yourself cancer free? My husband and daughters insist that I have been cancer free every since the first surgery to remove the lymph nodes and tumor. I kind of feel like since I may have had some random traces somewhere, that maybe after the chemo and rads, I could say I was cancer free. Does anyone know if there is a correct way to look at this?
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bahamamom3 - That's a good question. I've wondered this myself. I've heard different things from different people. I'm not sure there is a definitive answer. After surgery my surgeon said "we got it all". When I met with my Onco, he said treatment was to reduce risk of recurrence. Later when he stopped my chemo early, I asked if he thought I got enough, and his answer was "I don't know". After my mammogram a few weeks ago, I got a letter from the radiologist that said they found no evidence of cancer. So I took that as NED. I also heard that some insurance companies require you to be 5 years out from treatment to be considered cancer free. It so confusing.
On the other hand being a "cancer survivor", I've heard you're a cancer survivor after you survive the diagnosis. Also others say, after your surgery. It depends on who you ask.
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I'm planning to be cancer free after surgery, don't really care what anyone tells me, so I think it really depends on when u consider yourself cancer free!
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Well said, Julie. Sounds good to me.0
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I just met with both my RO and MO, plus my general surgeon on Friday. I asked all of them this very question about "cure" and "cancer free." The answers differed a bit, but all of them considered me "in remission" not cured. I'm not sure it really matters what the doctors say anyway.
The truth is that I did absolutely everything I could to fight this disease and now I am moving beyond it. I will take my 5 years of Tamoxifen and I'll be diligent about my follow ups, but I choose not to let cancer define me. I don't even really care for the term "survivor." I don't judge anyone else who likes to use that word....it just doesn't work for me. I see myself as more of a fighter than a survivor.
To each her own
SAN
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Hi all,
I'm glad to read your posts...good to hear that some of you finished chemo, survived surgery, and that we are all trying to be optimistic. I know I am...
My MO told my husband I was in remission before chemo, and that the chemo and rads were "clean-up" since I had close but clear margins in my lumpectomy. I prefer NED, personally. But then again, I try not to think about what my status is too much since I'm glad to be alive.
Tamoxifen now for nearly 2 months--if I take it at night I have terrible night sweats, but manageable in the a.m. No other side effects that I can see, so far.
I finish rads a week from today. My skin is okay--burned, but not uncomfortable--but weirdly my back (shoulder area is also red--the rads must go through me!). However the fatigue was a surprise. I sleep 10 hours a night and can fall asleep in the middle of the day in minutes if I let myself.
I'm convinced now shortness of breath is anxiety related. I went up on our Mt. yesterday (9500 feet) to hike and watch the solar eclipse and was able to do both as I always have been.
Hugs to all of you--<3
Claire
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I done with chemo and doing the happy dance!
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Yay, Julie!0
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Saw the Radiation Oncologist months ago....now that chemo is done....surgery is done....while I heal I am going for my "first appointment". Not sure what to expect. I do know that after a TRAM flap I am in no shape to lie on my stomach for planning. I am doing really well but not quite there yet. On to the next adventure. I hope to get cleared from the orthopaedic doctor to drive and hope my plastic surgeon agrees. I can't live in the woods and not drive anymore. I am tired of asking for help all the time........I need my wheels!
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Thanks GrandmaV!
Bonseye, hope u get to drive soon, I know the feeling, I couldn't drive for a while too due to drowsiness from medications I was taking and fatigue too.0 -
Julie You go girlfriend. I finshed last Fridaya nd just feel like today I am coming out of my chemo fog.
Boneseye I am on to rads as well. May 30th is my "mapping" then 6 weeks of 5 X a week.
And under the question of "Does anyone care that I have cancer" Both of my children are adopted. My ds (18) is planning a trip to meet his birth parents in mid June. He has been planning on this summer for a couple of years. I have a great relationship with dd 's birth mom, so this is not new to me, just could the timing be any better. He and I have talked about timing and due to his job, work committments for me etc this is the time that seems to work best. That and I have felt pretty well thru all, but part of me just keeps saying really. His Dad would be less than helpful in this situation. Thinks we should just send him off on his own, NOT. So he will go for about a week and his sister and I will meet them all for a few days at the end. And the adventure continues!
I wish all a gentle day and if we all keep a sense of humor, we may survive.
Nel
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Nel, congrats, I'm right behind u on rads after my surgery 6/8
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It has been far too long since I checked in here. I am done 20 rads with 10 to go and am thankful for the 3 day weekend! So far, not too bad. A little pink and itchy. Mostly just tired. We will see what the next few weeks brings...
Bethu...glad to hear you are moving along, even with bumps in the road. I'm glad, too, that you were honest with your husband. I have found myself a little more outspoken than I used to be, but in a good way. Some of this experience has been definitely a growing and learning experience. Wouldn't wish it on anyone, but find things I'm learning that I wouldn't have learned otherwise.
I start Tamoxifen after radiation. And my PS has told me that he usually waits about 3-4 months before doing the 'swap'. I can't WAIT to be rid of these TEs either, especially since my treated side has been swollen since I started rads. I see my PS the week I am done, and he bases fills and swap on how my skin is, and gives me plenty of time to completely heal. I'm glad for that.
So far, rads has been so much easier than chemo for me, yet not without its issues. I still have very little appetite, and always feel queasy after rads. They tell me I shouldn't but it's been pretty consistent! I also still have some neuropathy in my toes, but it is slowly fading. My hair is coming in, slow but sure! And my eyelashes are finally coming back! I've missed them the most.
Good to read about everyone's progress, even with the ups and downs. This does keep moving on, and that is something to celebrate!
May everyone have a relaxing, healing weekend.
Andi
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Hello Everyone!
Facial hair...what is anyone doing about it. Mine is long and white!!! I didn't read anywhere that I would grow facial hair. I am not going to shave my face and I have been praying it goes away.
I haven't started taking Arimidex yet. I hate reading and worrying about side effects. I don't have to take Tamoxifen since I had an hysterectomy and had my ovaries removed. Anyone taking this drug?
The weather will be in the 70s in Indiana this week. It will be great to be out of the 90s!
Take care and let me know about facial hair.
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Beth-I do have facial hair, but it is not any more than what I had before. I have a few stray hairs that grown on my chin area. My daughter calls them "goat" hairs and complains about them so much that I usually wind up using the tweezers to pluck them one at a time.
Also, I take arimidex. I started about the end of February. I have had no side effects from it yet. My onco said it would be about 6 months before any side effects would surface. So far, so good.
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Beth ~ Just yesterday I stood looking at hair removal products in the drug store, but left empty handed. I SERIOUSLY need to figure this out ~ and fast! I'm considering waxing, but I don't want to do anything that makes it come in worse. If you hear anything helpful, please PM me!!
Also, I'm supposed to start Tamoxifen next week, but I can't seem to make myself fill the Rx. I started a new topic about it called "Staring at my Tamoxifen Rx." In the hormone therapy forum :-/
SAN
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I know that this has very little to do with breast cancer, but I was feeling so great after all that I have gone through for the last 9 months. A couple of days ago my husband retired from work, and we spent the last couple of days celebrating with family, his co-workers, etc. This is such a happy time for us. We were planning a trip next week to Myrtle Beach and more trips in the future. I am so grateful for both of our health and was so looking forward to this time to spend enjoying my grandchildren, working only one more year myself. I also can't help really appreciate every little thing so much more now having had BC this year. My oldest daughter, who has been estranged from us off and on most of her adult life-she is now 36) and her husband (a loser) moved in with us a couple of years ago in order to get their lives in order, pay off bills, etc. They moved out for a few months, and then just after I started chemo, they came back. We tried hard not to let them move back in, my husband even told them it would be too hard with my health as it was, but to no avail. They insisted, and we welcomed them back. There is great animosity between her and one of my other daughters, and right now they are extremely mad at each other. No need to give all the details, but I am worn out from trying to keep the peace. Today I had a very scary phone conversation with the one who doesn't live with me, demanding we throw out the other one. Anyway, now I am afraid to even leave the house. I am so angry at both of them for dragging me into all this. I can't get the one to understand that whether or not I want the other one and her husband living with me, I can't very well throw them out on the streets, and I can't control what either of them say/do to each other. I am also very upset that now that all of this is going on, I am too afraid to leave my house for fear that the ones living with me will tear it all up or steal everything I own. Ah!!!!!!!!!!!!!!!!!!!!!! I am also mad that even though I am better, why don't my daughters understand that I have had enough for one year and leave me alone.
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bahamamom3:
I'm sorry to hear your girls are raining on your parade. You have been through enough without more hurdles. I have similar family dynamics and can relate to you not wanting to kick your daughter out. I have a brother in-law that stays with us periodically. Makes for a very uncomfortable living arrangement. I don't really have any good advice for you but just know others feel for your situation.
Susan
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bahamamom3:
I'm sorry to hear your girls are raining on your parade. You have been through enough without more hurdles. I have similar family dynamics and can relate to you not wanting to kick your daughter out. I have a brother in-law that stays with us periodically. Makes for a very uncomfortable living arrangement. I don't really have any good advice for you but just know others feel for your situation.
Susan
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My last chemo was 4/17. My happiness for today: my nose hairs are growing back! I'm so happy that my nose has stopped dripping.
Phyllis0 -
Phyllis-- that made me laugh-- maybe because I can relate! What joy we get in the little things. For me, my nostrils STILL stick together and I have to pull them apart-- RFLMBO.
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Q - LOL! Sorry to laugh but thanks for relating. I'm looking forward to the day when I have enough pubes back that peeing isn't an adventure.
Hopefully you're feeling well apart from your nose.
I had my surgery on 5/18 and start rads on 7/12. I'm pretty happy for the break in between!
Phyllis
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Phyllis, and Quaatsi, Ah the adventures of hair growing. Some I'm glad to have back, others not so much. Shaving legs and arm pits regularly now. Was nice to have a break from that. But I too am grateful for nose hairs. I'm liking my hair short. Just wash and wear. It came in curly and soft and I get lots of compliments, so I may keep it short.
It's nice to hear from you gals. I continue to improve day by day. I'm 5 months since last chemo, 2 months since rads. I have 7 more herceptin infusions to go, and have been on Femara, now 2 months. Tinnitus seems better lately. Most days I feel real good. I even managed to loose 4 pounds. But its very slow going.
bahamamom, Sounds like you and your husband a getting along great. I understand about family problems, too. I haven't been in contact with my 2 sisters much since my diagnosis, because I knew there would just be trouble to no end. Thankfully they're about 120 miles away. I hope you can get things sorted out with your kids.
I'm thankful for all of you. It's been so nice to have kindred spirits in this long, arduous trek. I hope everyone continues NED, and can be happy and live a long life. Even though some of us still have treatments or surgery coming up, we've come a long way together. Thank you.
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Susan & Grandma-Thanks for your kind comments. It looks like the oldest daughter and her husband are moving out because apparently we have offended them also. I am very happy to see them go, but I hate that it has to be because they are angry at us and our other daughter. Regardless, my husband and I are so looking forward to having the house back to ourselves. And yes, we are getting along very well-that much I am very happy about. Grandma, I am so glad that you are feeling good most of the time now. You deserve it!
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