Starting Chemo May 2008
Comments
-
To all who responded - thanks for reinforcing my decision to seek a second opinion. I tend to be too passive and have now seen that I absolutely need to be my own advocate. The day of my lumpectomy I was escorted to my bay to be prepped for surgery and I noticed the sign saying NO tubes, needles, etc. on RIGHT arm. After getting into a sexy hospital gown, an aide came in to do bp and pulse and started to put the cuff on the right arm. I pointed out the directive and she took it well, saying I might need to remind others as well. Easy to do when you are awake but not when you are anesthetized! I also appreciate the comments on the dose dense regimen. The studies seem to indicate "acceptable" SEs when the treatment is condensed but who knows what acceptable means. In any case, I still have to get my second opinion, possibly the results from the Oncotype and get bone scan and echocardiogram before I can start anything. In the meantime I continue to obsess and swallow atavan.
-
collector, "acceptable SE's" is what the onco thinks when he's out on the golf course on Wednesday afternoon and his cell phone is turned off. Hah!
drcrisc/Christine,
I can understand about the confusion regarding LE risk. I only had 3 nodes removed with my left mast/SNB. There wasn't much digging done in my armpit itself (2 of the 3 sentinel nodes were lower), and I didn't get rads, which further increases the risk of LE.
Even so, my surgeon and all her nurses told me never to allow any BP's, injections, blood-draws, or i.v.'s on the left side. There was a huge sign to that effect over my hospital bed when I was wheeled in from the recovery room; and nobody violated the rule. My surgeon told me I had around a 5% chance of developing LE, but that risk would last my entire life; and I would never know what might trigger it in me.
Already I've been tempted to let people do BP's or blood collection on the left arm, just because it's easier and because my right hand and arm are getting all the abuse lately. My onco's nurse, though, said not to be tempted. She and the chemo nurses have all told me they won't have any problems using my right arm for everything. My onco's nurse said they do BP's on legs whenever necessary--no big deal.
Even the nurses at my PCP's office didn't flinch when I asked them to use my right arm; and when I explained the situation and said I'd like to let people use the left side, they said DON'T DO IT!
OTOH, there are docs who say it's OK to use the surgery side as long as "only a few" nodes were removed. How do they know how many are too many, and whether removal of just one node messed up lymphatic drainage so much that LE is going to develop? They don't know.
The literature I was given by the physical/LE therapist I saw last month said after an SNB we should "avoid, whenever possible," using the at-risk side for BP, needle sticks, etc. I thought that left some wiggle room, like when you're in a car wreck or something.
otter
-
Thanks, Otter. And you can just call me Cristine. I was in a fog when I picked my user name (the first part of my regular email) and didn't realize it would be so used here! I would change it, but then that might confuse people and I would have to explain it!
I see my bs on May 13th and will definitely ask him about it. I will also ask my onc the next time I go in. It will be interesting to hear their responses and I'll let you know.
Wishing everyone a decent Monday and again "good luck" to all those starting this week along with a great big hug!
-
Maybe you all can shed some light on LE. I had my lumpectomy a month ago and the mastectomy two weeks ago. I've been doing all my exercises but still have no feeling under my armpit. My daughter has to shave for me...what a trooper. Does this mean I have LE or just some nerve damage? How long did it take for your feeling to come back? My surgeon said it's not LE but will take some time to heal. He couldn't guarantee that the numbness would subside either....ladies??? I see my plastic surgeon today and will hopefully have the drains removed.
Roxi -
Hi Roxi- it doesn't soundlike LE (no swelling), but nerve damage from cutting. Some of my feeling along the bottom of my arm has returned, but not the arm pit or back of my shoulder. I had my surgery March 24 and I'e heard others that have been numb even longer
-
Caveat: I had a lumpectomy (lemon-sized lump o' tissue removed) with a re-excision on 4/4/08. I still have quite a numb patch which covers about a 5"x5" area, but the feeling is coming back.
Scarring (inc from radiation) can disrupt lymph flow. So check with your doctor about this, but at the suggestion of my sister (an OT) and with the okay from my docs, I've been doing "scar massage" since the steri-strips came off. Nothing too fancy: When I'm hanging out watching TV,* I just put some antibiotic ointment** on my fingertips and massage the site to improve the circulation, flatten the scar itself, and reduce the cording. Firm, but nothing painful; I kind of pay attention to the way the skin feels.
I think it has helped a lot and I am amazed by how much and how my body has healed! The site now feels normal save a small 1" square that is still hard. I like the idea of doing something nice to my increasingly beleaguered body & breast. And I swear, it isn't as weird as it might sound. See also: http://www.lymphnotes.com/article.php/id/31/
My little sister says scar therapy can often even help with "old" scars. The important thing is a) to get doctors okay and b) make sure your incision has healed.
* Or once, during a 500 mile late-night drive across the rural midwest! (Lucky I didn't get pulled over! "Well you see, officer...")
**Like many people, I'm sensitive to Vitamin E--gives me contact dermatitis.
-
hi roxi, sounds like you are dealing with some nerve issues, they get quite dissrupted throughout the surgery.
I had mastectomy with axillary node dissection on April 2 and still have the numbness under my armpit and bottom of that arm. I doesn't feel as thick and sticky as it used to, but still am leary with the shaving. I asked my surgeon as to how long this will last.....and he said you usually get about 1cm of feeling back every 3 months. With everyone being different this is not set in stone.
good luck with getting your drains out, there's nothing to it !
-
Thanks ladies for your speedy responses. I was told I may need physical therapy but have been walking the wall everyday. I'll make sure and ask about scar massage. It's great to have you all here for support!
Roxi -
Roxi, I think it's very common for the armpit area to be numb after a mastectomy, especially if there were lymph nodes removed. My mast/SNB was Feb. 5 (3 months ago), and my armpit is still totally numb even though the incision runs just below the "hairy" part. My armpit is not swollen, and I know the numbness is not due to LE because I had an exam/evaluation by a certified LE therapist in April.
The surgeon has to cut some nerves during the surgery; it's pretty much unavoidable. Sometimes the numbness includes the back part of the upper arm, and even the shoulder and back, if the intercostobrachial nerve was "sacrificed" (love how they use that word!). For a mast, the numbness nearly always includes a strip along the mast incision itself. I've heard that the numbness may be temporary at some of those locations, but at others it will probably be permanent.
I've been able to resume shaving my armpit (very carefully) by twisting around so I can look where I'm pressing the razor. I had to practice to see how much pressure I was using (comparing it to the "good" side). It works fine, though; and I would much rather trust myself than let someone else do it who could not possibly know how much pressure was being applied.
Gosh, there are so many changes we must adapt to, when finding our way through this maze!
otter
-
Hi everyone-
I'm usually on the April thread but jumped over here to see what was going on. My first tx of A/C was April 25, I go again on May 15. I still have my hair but I know my days are limited and I'm getting pretty anxious...my husband is going to shave my head when it starts to fall out. I have 23 yr old daughter that lives in Texas and a 18 yr old son that is a Junior in high school. It is much worse for my son, he's mad that I chose to have chemo! I've explained to him why and how I was lucky to have a choice. When my hair is gone I'm sure he'll be upset for awhile. With him I have to act like it's "no big deal" he's the kind of kid that needs positive reinforcement.
I've got 1 wig and several scarves to get started. I need some hats though, they're really stylish now
To all that are just getting started with treatments, expect some icky days but certainly some great days too. I've just had 1 treatment so far, had a lot of nausea the first 3 days, but after that I've had no other se's and have been able to work full time. I hope the next 3 treatments will go as smooth.
Thinking of you all!
-
I had a lumpectomy Feb/08 along with the SNB biopsy. I had no drains but a lot of swelling under my armpit. I remember taking a walk about 2 wks afterwards and I had this terrible tingling in the upper part of that arm (like knives were poking me) I had to hold my arm in really close to my side to finish my walk. At about 3 wks I had the doctor drain the swollen part under my arm, it felt soo much better afterwards. So, it's been almost 3 months since the le and I still have total numbness in my armpit and the tricep area, the tingling has been gone for 2 months though.
So this too does pass
-
Thanks again Ladies,
My appointments with the PS and General Surgeons went very well today. They yanked my drains and have provided clearance for the oncologist to lay out my chemo schedule. I see him tomorrow. I'm glad I'm not doing this alone and all of you are here. I also saw something on the 5:00 p.m. news today that they are getting close to a possible vaccine for breast cancer. I dropped the phone to catch what I could. Not sure if the link below will work. It's all over the news....promising
http://www.washingtonpost.com/wp-dyn/content/article/2008/04/13/AR2008041301616.html -
ECHO and PET scan today (chemo starts Wednesday). I have a mitral valve regurgitation but otherwise am in good shape. PET wasn't bad -- After opening my eyes once and thinking, "Hmmm, perhaps I AM a bit claustrophobic!" I kept my eyes closed the whole time I was in the "tube" (which was open at both ends) and managed to doze off for 20 minutes or so. BRCA counseling tomorrow. Have adjusted to my short hair -- why didn't I try this before?! The fun never starts, er, stops! Am thinking of Christine and eak and anyone else whose Big Day was today, and everyone else (KristyAnn?) in the pipeline.
-
Hi all,
Rockthebald - I didn't start today, but thanks for the good thoughts anyway. I am in "insurance limbo" - still trying to get approval for the second opinion on my pathology. Now my onc won't even start until we get it because I asked for it! They got confused because the original request was for Vanderbilt Univ. but we are in CA with CA insurance, so they didn't know what to do with an out-of-state request. One of the ladies in the onc's office has made two requests - tomorrow will be the third. I have called twice. Grrrrrr!!!
Guess I still have time to shop for stuff on that list...glad your tests went o.k.But eak did (if I remember right!) and I hope it went well. Let us know...
Roxi - good luck with your appointment with your onc tomorrow.
Ladies, I must have missed the numbness part, 'cause nothing is numb, but the incision and surrounding area from the SNB is still tender to the touch after 4 weeks. The lumpectomy/re-excision site is not as tender though.
Happy Tuesday to all!
-
Hi ,
Well i finally got my protocol, not one I have seen here, but this is what he has me on after consulting with another onc, they feel this is best for me.
3 treatments of FEC at 3 week intervals and 3/3week treatments of Docetaxel (Taxotere)
F- Fluorouracil
E- Epirubicin (he said this is instead of the adriamycin)
C- Cyclophosphamide
D - Docetaxel (Taxotere)
I go in tomorrow for my port or dome as they call it and then start on Thursday May 8th. Has anyone else been on this mixture ? thanks
-
Starting chemo in the morning. Very nervous but feel that I am as prepared as I can be
.... I hope. Angels...I also have a port. I have a feeling that we'll be very happy that we have them. It will be uncomfortable for the first week but then its just there.
I'm having a glass of wine (or two) in hopes of being able to sleep well tonight. I prefer it over sleep meds.
I wish everyone a good week. For those who have started chemo, please check in and let us know how you are doing if you are up to it.
-
Familyroks, I'm starting chemo in the afternoon (EST). Today was consumed by a wonderful if a bit draining session of gene-counseling. Long story short, Dr. O said that recommending that I get tested for BRCA mutations is a "no brainer" and that quite likely I will have a mutation.
Got home late-ish. Still have a couple hours of housework to do before my out of town friend arrives. Instead, I talked to my little sister and hung out with a friend and her daughter. Figured it was as least as important for me to feel relaxed (and for N, who is 10 yo, to see me normal and healthy -- we tried on hats!) as it was to have a clean kitchen floor.
Familyroks--all the best! I think that if one takes into account the time difference, we'll be in the chair at practically the same time. Take good care.
-
"In the chair"?! Well that doesn't sound so good! lol
We might well be in the chair at the same time...I'll be 9:30 or so Pacific time. I spent today Lysoling everything. Hand scrubbed all floors, dusted the heck out of everything, wiped everything down. Can you say paranoid? I just don't want to be any sicker than I have to. DD, in her senior year of high school, wakes up with horrible sore throat and runny nose. *gasp* I immediately tell her to stay away from me. Guilt to follow. Such a loving mother. She stayed in her room all day.
DH has the day off and will spend a fun filled 2 hours with me in chemo. I have my LemonHeads packed, a good book and whatever else I think of in the morning. I'm thinking a light breakfast. Light is relative as I've been on Weight Watchers since October and all my meals are fairly light. Maybe just a yogurt. I would hate to embarass myself. Emend...got it.
Dang I hope I sleep tonight.
Rock...YOU take care. If you can, check in tomorrow. I will try as well.
-
Angels - I will also finish with 4 rounds of Taxotere. And he "substituted" Carboplatin for me instead of Adriamycin - there can be heart-related issues for the Adriamycin. The "C" is also called Cytoxan - there are several of us on that one as well. And I think the "F" is the same as the "CMF" (and the "C" in that one is Cytoxan/Cyclophosphamide also). So it sounds like you are on some well-known meds and some newer ones.
Familyroks - Hope you have a good night and it goes well. Let us know.
I'm finally out of "insurance limbo" and got the second opinion approved. So it should go out to Stanford first thing in the morning. Which puts me into next week for sure.
We're quiet tonight...
-
...bumping for Carla, so she doesn't start a new May '08 thread. Oh oh, too late!
I'll get back here as soon as I catch up with my reading...
otter
-
Good morning and good luck to all who are starting today. It seems Wednesdays are a pretty busy day. You have done the hard part, or almost completed the hard part - the anticipation. Once you get "in the chair", and start, you'll feel better.
Rockthebald = it's more important to feel relaxed than have a clean house. It was one of the hardest parts for me to accept. but now I've found my definition of clean has changed, and life goes on.
familyroks = don't feel guilty about telling your daughter to stay away. She probably would have anyway, and I"m sure she understands
It's a beautiful day here, sun shining, wind blowing so we're off to the boat. And yes, I"m loaded with sunscreen
-
To Family and Rock:
I've just prayed for your "time in the chair" and the days that follow. Here's hoping for minimal SE!
I remember the apprehension prior to #1 (last Thursday) and was glad it was short lived. Today,day7, I feel almost normal. I have a PT appt. and may get my hair trimmed (to look good for the remaining week I actually have hair)
Otter: you are awesome to keep track of everyone. Thanks
Good Wednesday to all!
-
Instead of "in the chair", how about "in the pool"?? That sounds a bit cheerier. (And is that drcrisc standing over by the diving board talking to a lifeguard? ; )
Familyroks: Last night, my friend's daughter was sniffing and sniffing. At some point, with finger mentally on the pump of Purell, I gently ask, "So, N, got a cold?" I was quite relieved to hear the poor kid has horrid allergies. I suspect (hope) my "vigilance" will wane to a less paranoid level at some point.
One day, one chemo, one set of test results at a time. It's got us this far...
Thanks for the good wishes. They do help!
-
Or maybe the bar? Aren't we getting "cocktails"
-
rockthebald, and familyrocks, best wishes to you on your first tx, my thoughts and good vibes are with you !
-
A floating bar IN the pool!!!! (You know, like the ones at resorts?)
I'm sidestroking over there now . . . (you guys are the best)
-
I like that...floating bar in the pool. I'm getting on my raft now, ready to soak up some rays!
Just got home from Chemo #1. Everything went well and I hope that I won't need to take any of the anti nausea medicine that I have on hand. First thing I did when I got home was make a sandwich. I was starving!
I will say this (and I have a feeling this is key) I am drinking tons of water. I usually have a minimum of 70 oz a day. Today my goal was to have 28 oz down before chemo...I actually got 42 oz in and drank another 32 during chemo. I hope I am right and that it will minimize some of the SE's. We'll see......
Rock - I hope you had an uneventful session!
-
Hi everyone! I will be another May teammate, I start tomorrow with 4 rounds of T/C, once every 3 weeks. I was diagnosed in early February, had a bi lateral mastectomy on the 11th of April. Also had tisuue expanders put in at that time. Have several wigs and turbans set on "their" heads and awaiting mine.
Figure I will lose mine in about 2 weeks. I'm in the beauty field so want to make this as positive and "fun" as possible. I am going back to work on the 13th. My clients are waiting with bated breathe the different wigs and looks I will sport. lol. Trying to keep "UP". Dread the chemo, like all of us do. Even considered not doing it, but, as before the mastectomy, am tired of whining about it so have decided to face it Head On. Cheers to All of You who write and respond and offer guidance, strength, and Love to those of Us in need. Couldn't and wouldn't want to do it without You. Best wishes and Positive thoughts to all! Carla -
Way to go, Carla!
otter
-
Carla - Welcome to the club none of us want to belong to yet thankful there are others to share with and learn from.
You'll be happy to get the first session behind you and should ease your mind somewhat.
Drink lots of water!
~Adrienne
; "Innocent"){kind=small}
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team