Chemo in Sept 08
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HOT FLASHES are still killing me.....if that's a sign tamox is working......I should be A-OK!
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Oh yea......I gotta give a shout out for my remote controlled air conditioner!!! lolol........finest thing since bread! I have all the vents turned towards me.......and when I get hot........I push the button on the remote. Bet I turn that sucker on and off 20 times a day.........but it's very nice. Has a heater in it too.......hope it works as well when it gets cold.
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The tech showed me the spot on the mammo that the radiologist saw. It's a cute little spot...but it doesn't belong there. She did the spot compression, which showed....the spot. So I had to wait for the radiologist to look at the spot compression and make sure he didn't want more views before I left. The tech came back and said that the radiologist wants me to have another scan in 6 months to see if this grows, but "he's not worried about it." Of course, he's not worried about it...it's not in his boob!!! And I told her that. I swear, people who have not had cancer just don't get it! I don't want to see what it looks like in 6 months! Am I being unreasonable?
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Heck no you aren't bein unreasonable!!!! In 3 months time....my tumor went from 6.5 cm's to over 10 cms. Like you said............it's not THEM!!!
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Hi Girls,
New from Spring, all is well:
Hi everyone -- Beverly's computer crashed last night and Richard asked me to pass on this information about Beverly. She is finally out of surgery and the surgeons said it went perfectly! They started at 8am today and finished around 7pm central, so 11 hours of surgery! WOW! She will be in the hospital at least 3 more days. At this point, Richard still hasn't seen her tonight-- but he said the agony of waiting is now over and he feels relief! They should be wheeling her into her room where Richard is waiting in an hour or so -- and they'll be checking on her every 15 minutes or so throughout the night. Richard says he expects to get a good nights sleep tonight, now that it's all over. He will be staying in the room with her -- he said the nurses will probably say -- 'Can you believe this guy sleeping through all this?!' Sounds just like Richard, huh?!
So, all the good thoughts and prayers have worked once again!Jane, Like Genia said 6 months seems like along time to me. I would try and feel it myself twice a month, but if it is soooo small that could be impossible. Anyway insist on being seen in 3 months, but I suppose if there is nothing confirmed, there isn't really anything to be done. Except have it removed anyway, just in case??
How are you expected to get through the next few months without worrying, it's really not good enough is it? Our thoughts are with.
Genia, your lump sure was big, thank god it has gone!
Take care girls, Singapore Chris x
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Wow Genia - that was crazy big! You had neoadjuvant chemo, right? I don't remember, did you have a good response?
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The "official" report says, "persistence of asymmetric nodular density. However, the margins are obscured by overlying normal fibroglandular tissue making assessment difficult...Probably benign."
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Jane - did you have a uni-mx or lumpectomy? If mast - would you consider have the remaining breast removed? How stressful for you to have to go through all of this. You're right, it's not the radiologist's boob
- ask your onc about it - he may want to be more aggressive. It's your body - fight for what you want!0 -
It's the "Probably" that would get to me.
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I had uni-mast, so I am seriously considering just saying bye-bye to the other boob. I'm reassured because I just had a normal PET scan that whatever is there is benign right now, but I'm worried about LCIS or something pre-cancerous that could be cancerous 6 months from now. I probably would be dealing with this much better if I weren't so flipping tired. I'm going to talk with DH this weekend (not that I expect that to help much) and ponder my options. Then, on Monday, I will call both my Oncologist and BS to get appointments next week to get both of their opinions.
My brother wanted me to have a bilat when I had the first one and my BS didn't want to do that. In one way, I wish I did, but on the other hand, it's probably easier to recover from one surgery at a time and only have one set of drains in. I really just don't know...
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Hi gals.....
Yes Donna.......I had neoadjuvant chemo. I had very good response. My tumor shrank/shrunk (lol) down to 3.5 cms. Still pretty big.......but a lot smaller than it was when I started with the chemo. That's why I'm always fearful of a recurrence. It was just so advanced when they finally started treatment. Part of the reason it took so long was because I didn't have insurance and no one wanted to treat me without it. Nice Dr.s huh! My Onco told me he didn't care about the money or insurance........what I had was an aggressive form of breast cancer that was growing every single day........and he began my tx the following week. He is an amazing Dr. and person in my book!!!
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Genia- so glad you found an onco that took his oath to heart. These days it seems the dr's are more worried about the money than the patient.
Visit yesterday went well. He said the bloodwork looked good and checked everything out. Told me chemobrain was real and could last for up to a yr after chemo ends...so I get to claim it until Januray. After that I guess i will have to admit to just getting more feeble minded in my old age...I didn't ask him about the brain damage study with the f5u.
he also said that I could see more changes in the scar sight for up to a yr after rads finished so I will have until March to see how much more changing it will do.He asked me if the surgeon had released me and i told him that he said to come back in two years..I kind of laughed and said I guess that's how long you guys want to keep the port in...He looked me square in the eye (no mile) and said "at least" UGH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! He then sent me for a chest x-ray (wants to do one every 6 ms) and sent me on my way. It may just be me but he listened better when I was on chemo....they were overbooked( said it was because of the upcoming holiday) Anyway he seemed please with everything and there was little comment on the mood difficulties on tamoxifen. I go back in December. I don't know when he will change the appts to 6 ms...I go back in october for another port flush.
I hope that Spring is doing well and recovering. Hopefully we will get an update soon.
I hope all of you have a great weekend. We will be doing quite a bit of babysitting over the weekend again so i will check in as i can.
Hugs to all
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Lisa - Looks like you and I will have a long wait for our de"port"ation. LOL Maybe they want the income from port flushing.
Jane - "probably" B-9? can't they biopsy it? how are you supposed live every day for the next 6 months wondering if it is growing???
Beverly - thinking of you.
For those of you that are not on FB, my echo showed no improvement in my ejection fraction. So I have to keep taking heart meds and go back in 6 months. bummer...
hugs
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Hi Girls,
Juli sorry to hear that you still have to take the pain meds, but better to be safe than sorry.
Just got back from dagon boating, it's exhausting!
Lisa, some of the girls over here have insisted that they have their ports taken out after their treatment. I fortunately got away without having one, but one of my veins in my arm has ended up really hard thrombosed as a consequent of chemo.
Some of the other girls in the dragon boat team also have nails that are lifting too, so it is definatley normal, hope they grown out soon.
Wink is starting the weight loss thread, so please join us if you would like to.
Have a great weekend everyone.
Singapore Chris x
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I'm thinking of keeping my port anyway. I've got one poor little usable vein in my left arm. All my good veins are in the right. I go in once a month for a flush and lock. My alternatives for anything IV or blood draws are in the neck and the foot.
No way, Jose!
Have a happy and blessed Labor Day... if we can remember it! LOL
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The weight loss thread is:
Chemo Sept 08; Let's Shed Weight
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Lisa - how long does he want you to keep your port in? My onc thought that I kept mine for an excessive length of time (placed Sept 8, 2008, removed July 6, 2009).
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donna- his original thought was two years. That's why the surgeon said i was released from him for two yrs...now with his little "at least" comment i don't know if he is considering longer. I know one lady here that had a recurrence at the 1 yr mark and they made her keep hers in 5 yrs. She jut got it out about a month ago. needless to say she was thrilled. The nurse basically told us during chemo that if it came back it is most likely to come back in two yrs. I guess also with me being a smoker for so long they are worried about the lungs. Anyway i guess i am stuck with it for a while. I could just really push to have it taken out i guess. At this point i don't know if i would be willing to fight this stuff again...I am so weary of being used as a doormat and these kids are driving me crazy...I just need to go to bed and hope tomorrow is better. Today they have been worse than i have seen them in a long time. It's been a super long day. You know when we had kids we knew we had to take care of them. We didn't expect our parents to take the lead in rearing them. I have raised a selfsih daughter who thinks of noone but herself.
Spring- Hope you are healing and not in too much pain...Can't wait to hear from you.
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Hi Girls,
Bettys, sorry you are having a hard time, it's not fair that you have had your own family and now have to do it all over again, It doesn't get any easier the older you get. I am sure that when the little ones are grown up they will love you so much and really appreciate all that you have done for them. There will be lots of hidden blessings waiting for you in the future, I am sure.
Wink, I am off to check out the let's shed the weight thread.
Spring, hope you are doing well! xx
Bye for now, Singapore Chris x
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Lisa - I'm afraid that I would be totally worn out if I had to raise my two granddaughters. I don't remember - how old are your grandchildren? Maybe you could join a "mommy board" and find some women in your area that are in the same situation as you; maybe you could get together and have "play dates" and share ideas to help you keep your sanity; there was a reason we had kids when we were young!
Five years seems like an awfully long time to have a port in; I know a woman that had BC and she said her port was like a security blanket to her - her doctor told her she had to have it removed.
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It's sad to say donna but there are quite a few grandmas here in the same boat. We all talk and know that the kids are in a safe place with us BUT we are all a little weary from having so much on our plates. The girls (2 and 3) are in pre-k and mother's morning out and stay at day care during the day. Daughter is working a lot of 2pm-7pm days so I have to pick them up after work and try to put dinner together before hubby comes in around 7 or so and she saunters in around 8-30 to 9..I just don't have the patience, the stamina and grandpa is a HUGE pushover!!!!! They work in unison and keep you running. They are typical girls in that they don't entertain themselves well. Movies don't hold their interest for long and they seem to want to stay under foot....oh well we are doing the best that we can. Hubby's cousin took little bit with her to spend the night tonight so we will have the three yr old by ourselves tomorrow. One is usually soooo much better to handle that one.
I can't remember but ya'll help me out here..I had the bi-lat. On the cancer side more was taken and i have more of a flap or dog ear whatever you want to call it..add to that the place that didn't heal and is drawn up tighter than a prune.(TMI but it looks like i have a butthole on my chest!!) .BUT i am having sooo much more trouble sleeping. My right side (BC side) hurts if i sleep on it BUT if I sleep on the left side the nerve damage in my BC arm makes my arm go to sleep just resting on the pillow..I end up turning all night trying to find something that works..then the flashes start. I still am not comfortable with the shower spray hitting me either...Any of you still experiencing pain this long after surgery or is that a DUH question? I am kind of wondering at times if i m not experiencing some truncal lymphadema but how the heck can you tell??? My arm hasn't changed and the nerve damage in that arm is nothing new it just seems to be a tad more sensitive now than it was. I am soon going to have to resort to pain meds to sleep.
Sorry for being a wet rag again. I PROMISE i will try to do better. My positive today is that there is the slightest hint of fall in the air!!!! Love the cool am's we have been having.
Have a great Labor Day
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Lisa - you could never be a wet rag! We are here to help and support you. I take 1/2 an ativan to sleep. Can't help with the other issue. I had a lumpectomy.
Beverly- thinking of you!
Happy Labor Day to all!
hugs
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Hi girls,
Update about Spring: I haven't spoken to her myself, so the following is a quote.
She's due to leave the hospital tomorrow (Mon). She sounded really good on the phone. Beverly told me her surgery was a micro-surgery, where they use microscopes and special lenses during the 11 hour procedure. She's still sore, but recuperating well. She's been on lots of pain meds Friday and Saturday, and has already been up walking around a little bit yesterday and today. The surgeons are very happy with her progress so far and she's in good spirits. Her appetite is back already and they've been making sure she gets plenty of food and nutrition. They're due to move into the Homewood Suites tomorrow and then they travel back home to Raleigh on Friday, Sept 11.
Lisa, if you are having trouble sleeping and worrying about lymphadeama, talk to your oncol or dr, I do sometimes have a heavy feeling in my uppper arm when I have exercised and take it as a warning sign, not to do too much. It always goes away but I don't have any pain. I can't feel under my arm pit, but didn't expect to, the feeling MAY come back. I have hair growing in the upper part of my armpit but not the lower half, a bit odd, but understandable I suppose.
Good luck girls. Singapore Chris x
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Lisa - I agree with Chris - maybe you need to be referred to a lymphedema specialist. We had a Physical Therapist who specializes in LA speak at our last ACS support group; she said that we all are at risk for LA even if only one lymph node was removed - it disrupts the flow of lymph.
I have problems getting comfortable in bed, but it's mainly because of the cursed coconut shell tissue expanders that I have under my pectoral muscles! Can't wait till my exchange surgery!
Beverly posted on FaceBook this afternoon...said that she was "waiting, waiting" - they must have been slow to discharge her.
Hope everyone's having a great Labor Day - just hope that I don't get too many overly celebratory patients in the ER (or too many suffering from "workitis").
Love Y'all,
d
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Hi everyone
I hope everyone had a relaxing Labor day. Juli, I am so glad you're getting appropriate treatment. I am very tired and am not recovering my energy level as fast as I did after chemo. I'm also keeping my port. My one good vein was infused the first time I had chemo and now the lab techs can't get blood from it.
Love and hugs to Callie.
Bettys, I remember those years with my son...you're wonderful.
I miss so much but I'm reading as fast as I can.
Genia...it has to be the chemo...I've never fallen out of bed and I've taken Ambien on and off for years...all I did was eat at first until I read the side effects...sleep-eating being one of the first publicized.
Jane, if I had known I was TN last July I would have had a bil mastectomy... if allowed...so I 'm keeping the port until my bone density results come in unless my doc insists I remove it.
{{{{{{Spring}}}}}} I'm so glad all went well with your surgery.
Wink love is grand...I get many kisses now when my boy is coming in the house and leaving.
Chris, thanks for all the lymphedema news.
* big grin*
love you all
mina
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Hi All, It's me back from the great sugical beyond, and my computer is working again! thought i would check in. Thank you for the good thoughts and prayers....
Jane, that whole spot thing in your boob is making me nutz. Can you ask for a breast MRI? Mammograms are worthless for those of us with dense breasts (and did you know dense breasts are many times more likely to get cancer, and many times more likey to be missed because of the density?) The breast MRI is really the only way to see in there for sure. The radiologist is not worried about it. HA!!! has the radiologist had cancer and gone through chemo and rads??? Anyway. Thinking of you and hoping you can get to the bottom of this.... (And who needs this stress?? ugh)
Genia, how did you get a "shiner"?? I must have been unconcious when this occurred! LOL.
Hope the rest of you are okay. The surgery was long, as Chris mentioned (11 hours) and I required 2 units of blood since my red count was so low (it was lower than normal when I was tested pre-surgery, thank you chemo!!!). I was given some patch behind my ear for neausea that caused me to have EXTREME vertigo! So when I became aware of it, I ripped it off. It took another day for the vertigo to wear off. The rest of the hospital stay was as expected, and I got up and started lapping the hallways as soon as the vertigo wore off! I was there for 4 nights though, and my husband was so ready to leave.
I miss the hospital bed! But am trying to figure out how to get in and out of bed... lolThe new "girls" results are nice, I think they'll settle in and look better once less swollen. The really good thing is my pec muscles are back on my chest, and I don't feel the tight/sore feeling any more! Yay! . The areas on my body where they took the fat (belly and butt) look totally ravaged, so i am hoping it looks better over time and that everything will be smoothed out in stage 2. Looks like hell now!!! ha!
Spring.
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Oh Genia, Tamoxifen TOTALLY caused hot flashes, that are extreme! I have had to go off it for almost 2 weeks not (week prior and post surgery). After a few days, the hot flashes hot less severe and less frequent. then basically I stopped noticing them. So for me, I know it is the TAM causing those wicked hot flashes. Yes, means it is working. I guess we should be "glad". LOL!!!
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Wow Bev - sounds like you've had a swirl or two around the blender! I've been trying to figure out how you're going to sleep too - you've got incisions top to bottom & front & back. Hope you've got something to help you out with that. Sending you gentle hugs.
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Spring - did they tell you to lay only on your back? Is there a recliner in the hotel?
Betty - Surprised the surgeon is saying come back in two years. My surgeon had me come back at 6 months, and then has asked me to come back at six months again. Quick appt, but I think she is checking for lymphedema and similar side effects.
I did ask my breast surgeon what she thought about prophalactic (sp) mastectomy. Her first words, are that we always support them if the patient wants them. The younger the patient, the more we encourage it, as it is more time to be diagnosed. She did quick odds in her head and based on my age (45) said there was about a 30% chance the other breast would be affected in my lifetime. She suggested that you just want to do it for the right reason. She said, if you want to do it, because you want to live, then your missing the point, as statistics show that survival is unaffected by the prop. mastectomy. What it does change is your probability for breast cancer in that breast. She said if you are the type to stress all the time (not just right before your mammogram) about a recurrance, then you should probably have the prop. mast.
For me personally, I've decided to leave it there for now. I do not have dense breasts, and at the very first sign of an anomaly, it's gone! I wasn't getting routine mammograms before, and I will now, so I think I should catch it early. My chest is profoundly numb, and though that is better than dying, it is also not something I think I would sign up for, if it was not needed. I still have a few months before the DIEP to decide for sure. I reserve the right to change my mind
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Hi Girls,
Great to have you back with us Spring. It's always a reflief when one of our girls is having something done, especially something so major. Like Colleen said, how are you sleeping, perhaps a rubber ring would help your backside, with cushions all around it, but you may end up with a backache!! I will be thinking of you when I sleep tonight. I will send you gentle sleeping vibes.
All is well with me, my oldest son returns from the Uk on Sunday and we are all really looking forward to seeing him, he is with us for two weeks. My second son then goes off to start uni in the Uk, so I will be left with jmy last 13 year old son. We sure are going to miss them.
Take care everyone, Singapore Chris x
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