Chemo starting in December 2010

hopefortomorrow

Elizabeth I will keep you in my prayers! Wow that is amazing that you will be able to walk that fast with no pain!

LisaMomOfFour

Elizabeth -- Good luck in your surgery!  Great to be up and about so fast, and pain free.  Let us know how you are doing when you are back on your feet. 

LisaMomOfFour

Hi DivaJ -- Congrats on finishing your treatment!  I've still got radiation to get through so I'll be there in about six weeks.  I plan on joining an "On the Mend" program at our local cancer wellness house.  The therapist that I met with there, told me that a lot of women have a hard time finishing treatment.  I hope this transition goes very smoothly for you.  Hugs!  --Lisa

msjag

I wanted to wish you a Happy Mother's Day.  As everyone finishes their chemo, and may move on to rad threads, I hope to always keep in touch with our group here.  I survived chemo because of all of you, and finished radiation with some of you.  I hope everyone is doing well.  I wish I could meet you all for lunch!!   Take care, and day by day, your treatment will come to an end, and our long lives cancer free will take over! 

nolaa

Hi all -- been on vacation in San Diego for a week.  Just as I was leaving they called to tell me my surgery is tomorrow.  So little time to prepare but we had lots of time to relax and forget about it all.  It was perfect.  So tomorrow is a right mastectomy, port removal, expander put in, and oophorectomy.   Big day.  I'm actually excited on one hand to finally be getting the cancer out.  On the other hand, I'm scared and sad to be be losing a part of my body (left one will come off in a few months).  The hardest part is seeing my kids sad that I'll be away for a few days.  Trying to stay strong in front of them.  I won't even start rads for at least 6 weeks, so I'll be hanging out here for a long time...

sammolisa

msjag -  well I'm here in Nashville if anyone is close!

 I plan to hang out in here for a long time - same sentiments as msjag-  All of us have gone thru this together and cried and laughed and worried and complained and encouraged each other through it all.

Nolaa- hope your surgery went well - thinkin about you today. hugs! 

Ebann - when is your surgery for your hip?

Hope - you doin ok?

I have hair!!!!  EVERYWHERE !!!!   Why did it have to grow back in the places I didn't want it to?!?!?!!?  LOL - seems like I have blonde facial hair everywhere -  eyelashes are back in - eye brows are back in mostly -  and I am having to shave again  BOO!!!!   Hair on my head seems to be turning darker as time goes on.   It's about  a half an inch long!!!  

Hope everyone had a good mothers day - even the ones who don't have children - (like me)  My neice has been my little girl for years now and she sent me a mothers day frame with a pic of us together. - Beautiful.

hugs to all!

ebann

sammolisa, My surgery will be in 3/4 weeks after I finsih all the pre-op stuff. Thanks for asking how are you doing?

sammolisa

I'm hangin in there.   I burned a bit with rads.  The skin died under my arm and sloughed off.  It's all raw under there.   Thanking the Lord most of it is numb and I can't feel most of the pain.  Keepin it lathered with Aquaphor for now -  I still have a week before it starts to heal.   Doc said the rads take about a week for the skin to be affected by each rad encounter -so  this past tuesday was my  last rad session - so sometime next week it will peak out and then start healing.  My sternum is burned too -  more of a bad sunburn tho and the skin hasn't turned grey or anything yet.    I have to go see my PS in June and beg him to do my surgery in August.   I don't wanna wait past that as I am supposed to travel to California in mid Sept.    So if I miss the August window - it won't be done til I get back from Cal - and I would rather go out there with them both done, not just one.

Hugs everyone!

nolaa

looks like its been quiet around here...

I got home from the hospital on Wed and am just now getting brave enough to type.  Arm is still sore.  I kept feeling like my right underarm was sticky and couldn't figure out why until today when I wore a thin shirt and realized the underarm is soaked with sweat.  I wonder if all of the extra fluid from the swelling is just coming out of my sweat glands.

sammolisa so sorry to hear about all of your burns.

Hope everyone else is doing okay. 

hopefortomorrow

Hi girls!

I have just been hibernating. I haven't been in the best of moods lately. I have been struggling with fatigue and frustration that I want to do more than I have been able to.

On the other hand, three weeks out and I noticed that all my mouthsores are gone, and my sense of taste is coming back. Two glasses of wine last night actually tasted good.

I have my niece's wedding June forth and I am trying to figure out what to wear, on my body and head! Instead of taxol, the doctor switched me to taxotere- and now at this point I am losing hair again! I look like a baby where the hair has worn away in spots! The only part about it that bugs me is that one bald patch is right over my forehead! I know it is temporary, but argh!

I start radiation a week from tomorrow. Moving along! Sorry to hear about your burns Lisa!

Nolaa, I hope you are starting to feel better. I didn't have as big a surgery, but even with the lumpectomy I remember having a very sweaty underarm! I also felt like I had alot more odor along with it. It embarrassed me during therapy. :-/ It did go away with time. I agree, probably the water figuring out where to go.

I hope everyone is doing well!  I do think our thread has been the friendliest! I tried a few others, but they aren't the same!

karebear76

Hi all,

I went to my oncologist on Friday and she had a load of info fo me. Initial path report showed I was ER/PR + and HER2-. After they did the FISH test it showed I am HER2 +. It is good cuz they can treat it but it means another go of chemo just a different kind.

First I have to go to Boston for a 2nd opinion follow up and see if there are any trials I can get in on. They wanted to do radiation on top of chemo and dh and I talked about it and decided that we are going to postpone radiation. Just not knowing how the new chemo meds are going to treat me I don't want to push it with going to radition and having to go when I feel miserable!

So now I feel like I have to start all over. It is so very frustrating.  

hopefortomorrow

Hugs to you Kerri- hang in there and be strong. You are young and you have your children- like my Doctors have told me- "We want to throw the book at it." To make sure they get everything." I am sure God is directing your path. It is wonderful your husband is supporting you like he is.

Did I understand correctly- are they wanting to do Chemo and rads at the same time? That does sound like it would be a grind, if that is the case.

nolaa

Kerri - it must feel so frustrating to think you're going back to chemo again.  My mantra has always been I'd rather do everything now to get rid of this cancer so that I never have to deal with it again.  So just keep up all those images of the chemo killing the cancer inside.  I'm HER2- so I don't know what the side effedts are, but for some reason I think that it is much more mild than the things we've been through already.  Any Herceptin veterans out there who can talk about SEs?

I'm still waiting anxiously for the path report.  I just want to hear the words, "Clear margins." 

dlcw

Hi nolaa - I had my surgery Monday of last week and have the wierd underarm stickiness too - I thought it might be adhesive left from surgical bandages for the first few days but I can't get rid of it so maybe it is some sort of fluid....finding the drains to be a big pain and can't wait to get rid of them.  Also realizing that my 'new' armpit is bizarre - really deep - will never be able to shave it in its current shape....anyone else have that?  I had full axillary node dissection so I think they took out alot under there.  I too am anxiously awaiting path report info - good luck to us all!

dlcw

nolaa

dlcw -  I also had a full dissection (known cancerous nodes from previous node biopsy) but my arm is so sore from the mastectomy and expander that I can't really see in my arm pit!  I can only see when I look in the mirror so I don't have that sense yet of what is really left.  The whole thing feels very sensitive -- some places have feeling and others are numb, but the whole thing feels raw even though in the mirror it looks perfect.  Hoping the weird sensations will improve and the stickiness will go away once the drains are out and the fluid is finally all gone.  Happy healing! 

karebear76

I believe I had the full dissection too. I also have the DEEP armpit! I tried shaving it once and there was just no way I could get in there until my range of motion is back to normal and the numbness/sensativity is better. I know I will still be numb in some places but some I should get back.

dlcw

nolaa/karebear76 - I too have lots of numbness - the underside of my arm is numb all the way down to my elbow, as is the entire underarm area and most of the left side of my chest and side....sure hope some comes back.  The surgeon had warned me and said it sometimes returns but didn't offer any percentages on that.  I didn't do any recon right now so I am probably less sore than you guys - I can raise my arm to about shoulder height, but more than that pulls on the drains.  I am planning to ask for a PT referral when I see him on Thursday so I can know what's the right type of stretching/exercises to do in order to get full range of motion back without causing any damage.  I am very concerned about getting lymphedema and have read that weight lifting has been shown to reduce the chance but I have no idea what types of weight lifting to do (an am hoping it's with really small weights!)

dlcw

LisaMomOfFour

Hang in there Kerri!  I'm so sorry you have to go through chemo again, doesn't seem fair.  I'll be thinking good healing thoughts for you. 

karebear76

dlcw: I didn't have recon either. I have an OT and my range of motion is getting better. Right now I am lifting maple syrup for weights!! LOL

dlcw

Karebear76 - glad to hear the OT is helping...the only weight I lifted today was the brownies that my neighbor brought over with dinner....really have to get serious about eating healthier!  My husband grew up in New England and he is a huge fan of all things maple - first time I brought home Aunt Jemima he was horrified!

When will you find out about your next chemo protocol?  I am hoping to start again in the next 2 weeks - that will be 2 to 3 weeks after surgery - my oncologist thought that would be ok as long as the incisions were all healed.  Anyone that had surgery first have any advice on that?  How soon did you start after your surgery?  I don't want to end up with an infection but I also don't want to delay too long....just want to get on to the next step and get this whole process over with!

dlcw

karebear76

dlcw: I go to Boston next Wed and next Fri I will see my oncologist again. I am guessing the following week I will start chemo again. I will be a month post op on Sat. I am with you on eating healthier. It is just so hard, brownies are just way too yummy!!! LOL 

nolaa

path report came today.  Good news -- clear margins!

bad news 7 of 19 nodes positive despite having already been through chemo.  So they are starting me on an AI immediately.  Anyone taking Femara?  The SE's sound shitty.

Still trying to heal before radiation. 

karebear76

nolaa: Ya on the clear margins!!! I had the same 7 of 19 nodes pos. What is AI? Never heard of that.

nolaa

Kerri - its an armomatase inhibitor.  Kind of like Tamoxifen, but you can only have it when you're definitely in menopause.  Since I had my ovaries removed I'm no longer eligible for tamoxifen and have to go straight to an AI.  Apparently your adrenal glands make a hormone that can be changed into estrogen and so the AIs block that pathway so that there is definitely no estrogen in your body.

dlcw

Hi All - I got my path report yesterday and had 2 cm of remaining tumor and 3 of 18 nodes positive....I also found out that instead of being all TN the remaining tumor was about 30% ER+.  So, I will be doing more chemo, then rads, then tamoxifen unless the AC shuts down my ovaries for good in which case I will do an AI....

nolaa - We had our surgery the same day!  How are you feeling?  I got my drains out (a huge relief) but I have a large hematoma in my armpit that is super painful - hope it resorbs soon....Did you get a ki67 score with your path report?  Mine was not ready yet but my onc said the pathologist told her the majority of the cells left were NOT proliferating rapidly.  My onc said that may be why the cells were not killed by the chemo - it only works on them when they are dividing.  She also said that it was pretty rare to get a complete response in hormone positive disease.  So, your results may not be as bad as someone without hormone positive disease, hopefully....just wanted to offer that info as I know I was really bummed to have disease left after chemo.

So, more chemo to come - not looking forward to it but glad to have learned so much from all of you about what I can potentially expect with the standard drugs - I am happy for all of you guys that are wrapping up and I sometimes second-guess my decision to do the study as had I done the standard drugs I would be finishing now too...

Hope everyone is having a good day!

dlcw

nolaa

dlcw -  Where did you have your surgery?  I was at Alta Bates in Oakland.  I'm doing ok.  Still trying to get full arm motion, but I had an expander put in so I think the chest muscle is still adapting to having this weird foreign object in there.  I still have my drains.  I go to the doc today for a follow up but I'm pretty sure they'll leave them in since one is still draining about 50ml a day.  I was told it has be as low as 30/day to remove them.  I've been really lucky to have no hematoma - maybe they just put the drains in the right spot!  I would love to have the drains out though, I'm sure I'd feel better.  For the hematoma you shoud try taking daily doses of arnica montant (a homeopathic med you can find at whole foods or similar type store - even my CVS sells it).  Arnica is great for healing bruises and that's basically what a hematoma is.  

Sorry to hear you have to do more chemo.  That must be a real emotional shock.  I was certainly bummed to have disease left after chemo.  But I think what bummed be out the most was that because of the large number of nodes positive they insisted on an immediate AI.  I was REALLY wanting to go on Tamoxifen and HRT.  I know on the surface it seems nuts to start taking estrogen when you have ER/PR+ cancer, but I was hoping all of the cancer would be gone, at which point estrogen is not bad for you.  In fact I found all kind of research showing that a lack of estrogen can be really bad too (parkinsons, cognitive problems, heart disease plus the normal osteoporosis, hot flashes, etc).  Anyway, its a long story and I was a bit off for a day, but I feel better now.  The most important thing is to make sure the cancer is really gone first.  

karebear76

dlcw: Sorry you have to do more chemo. I am right there with you!! It totally stinks but at least they know more and the chemo will get the rest of the disease! I will prob be starting up again in 2 wks or so. Maybe we will go through it together!

I hope you and nolaa heal quickly from surgery. I am healing well and have most of my range of motion back. It is still stiff and weak but it is getting there.  

dlcw

Hi All - took yesterday off from the computer to go to Time Trials for the swim team my children are on - nice to do normal 'non-cancer' activities.  My arm seems to be getting more sore, not less so plan to call the surgeon tomorrow and see if there's anything I can do to help it.  I didn't need pain meds after the first day when in the hospital, but I've had to take something to sleep the past 2 nights....ready for it to start to feel better.

nolaa - I had my surgery at Stanford.  Been really happy with the docs there and am a bit conflicted about potentially switching back to the local onc here in the east bay for adjuvant chemo.  Will have to decide soon.  Have to get educated about the Tamoxifen and estrogen in general....I have read every study I can find on triple negative, but now that I have both need to get up to speed on the ER+ stuff too.

I'm feeling ok now about additional chemo - certainly not excited about it but am ready to just get it over with so want to start as soon as they will OK me.  I have been reading about side effects and I am sure that this next stuff will be MUCH harder than the Gem/Carb/PARP so am just mentally preparing for six months of a hard time...maybe I'll get lucky and be on the lighter side of the SE's.

karebear76 - do you know what your next chemo will be?  My oncologist offered either CT or AC/T.  She indicted AC/T would be more aggressive but since I am relatively young (47) and don't have any cardiac issues she thought I would be fine if I wanted that - that's what I'm choosing as I want to be as aggressive as possible.  Hopefully what I've already had plus AC/T, plus radiation, and then tamoxifen will get rid of this for good!

Hope everyone has a good day!

dlcw

karebear76

dlcw: I did the ac/taxol first and it was bad but not unbearable(well the leg pain was at times) and I am looking at getting TCH this time. I hope those se's aren't as bad.  I will find out Wed what my treatment plan will look like and will know for sure on Fri when I see my onc. Once this course is over then onto radiation and tamoxifen. I am so so done with treatment and just want to be "normal" again.

nolaa

dlcw - I just looked up my ki67 and it says <5%, so I gues that is pretty low proliferative activity.  What I don't know is how to compare that to the histologic grade (grade II with tuble formation 3, nuclear grade 2, and mitosis 1).  Sounds like ki67 is similar to mitosis?  You can certainly look back on these posts if you want to know what to expect with ACT.  The most important part when going through is be able to focus on some sort of end point.  Helps get your mind off the short term misery when you can focus on the bigger picture of getting better and moving on.  I have to say, I haven't found a superb onc in the east bay.  LOVE all of my surgeons and other docs, but the onc has been a bit weird and she's moving away soon so I have to switch to someone else in her practice.  

They started me immediately after the pathology on an aromatase inhibitor and I have to say I feel like shit.  Well, compared to ACT, not THAT shitty.  I had so much energy after chemo ended.  Even as I was recovering from surgery I had so much energy.  I just felt lighter.  But the AI makes me feel sluggish with that tired kind of feeling behind my eyes.  I miss that energy so much!  I was so very happy when I was feeling back to "normal".  The doc say to wait a month and then see if my body adjusts to it.  Sigh...

dlcw - I just remembered -- there is a doc at Stanfod named Natalie Rasgon.  She does research in chemo brain.  You should contact her and see if you can get a baseline brain scan before you start your next round.  I know ACT hit me hard mentally.  There might be some protocols in her research you could join.