June 2011 A/C & T Groupies Unite!
Comments
-
I did, among many other SEs. It definitely slows you down! You're half way there, so hang in there!
-
BobbieJo - I didn't have blurred vision but I did find that I had to wear my glasses rather than my contacts because my eyes (or my brain) couldn't deal with monovision. I did have a little dizziness a couple of times.
Rose - nausea with the Taxol...did they give you any anti-nausea meds or did you fly solo?
Hugs,
Michelle
-
SOLO! They told me no nausea. I did take some zofran, but stayed away from the compazine.
-
OK, then I will put on my scopolamine patch tomorrow morning. Not going to chance it. And I might insist on Aloxi (that's a zofran-like drug).
-
Bobbie Jo, I did not have blurring and I've been wearing my contacts as usual. But I don't have mono vision contacts. I can understand how that would be a problem, Michelle! AC really does slow you down, it is fierce. I was very cautious because it made me so weak so I can easily see getting light headed if you were trying to carry on as usual. I swear, I feel like I'm forgetting the details (ie: pain!) of AC just like forgetting childbirth. I can remember general but not specific. Hmmm....worrisome or a blessing?!
I'm slightly dreading infusion tomorrow. I still need some benedryl to ease the itch, especially at night. The rash flared up on my head yesterday and periodically a spot of rash will show up here or there. Tomorrow is my last day of the steroid pack. I don't know what my MO will say about the rash. If there will be med changes, etc. I know I'm over the halfway mark, but I'm ready for the home stretch already!
-
Michelle & Rose, I had no nausea during Taxol, but I was also getting anti-nausea meds. Amend an hour before infusion, Aloxi & Decadron during infusion, Amend the following 2 days, & Decadron the following 3 days. So, I had an arsenal of meds on board...definitely did not go it solo.
-
Thanks, BobbieJo. I am going to make a big deal about anti-nausea meds today when I meet with the onco before treatment. If it ain't broke...
Michelle
-
I've been telling them all along that I've had GERD since I was a kid, and nausea and heartburn are a continuous problem for me without chemo. I've had bone aching the last couple of days, and it kept me up half the night last night. I understand that Herceptin is probably the culprit. I'll still take that over the nausea any day.
This has definitely kicked my butt, and can't wait until I am feeling healthy and unbroken again. When we're done, we'll have to support and encourage each other in a comeback fitness program!
-
The A/C certainly slowed me down. Especially after the 4th, I'm still trying to claw my way back & can't manage to stay out of bed all day. My vision has been wonky too, I wear trifocals anyway so it doesn't take much. I have Sorjigensons to go along with the Fibromyraligia so my eyes & mouth are always extremely dry & the chemo has made the eyes even worse.
Will see the onc tomorrow after labs & am almost looking forward to a transfusion! I think tomorrow will be my Taxol planning day---if there is enough to go around, if not we'll see what the plan is. I'm ready for most anything.
Did any of you have any rib pain post mastectomy? I'm 3 months out & having spot specific rib pain & it feels like ribs are lumpy. I mentioned it to both surgeon & onc & neither thought it was a big deal but I'm concerned as it is in the area of the hot spot found on my PET scan.
Love, luck, laughter, peace, prayers, & littles SE's to all
-
I have glasses but not heavy script. Until after AC. My options after seeing my eye doc are to wait it ou because it may go away and my eyes MAY return to the pre chemo prescription or take my financial lumps and get new lenses now. I'm still on the fence. Lightheadedness also a common occurrence while on AC
L -
Suzanne - I didn't have any post-mastectomy rib pain. I can understand why you would be worried about it (((hugs))). Hope it just goes away.
I am home from DD Taxol #1, and I am feeling pretty good right now. They gave me ALL the same anti-nausea meds as I had with AC, didn't even have to ask for them. And I got just the 6 mg of Decadron, plus the IV Pepcid and Benadryl. Wow on the Benadryl! I wanted to nap so badly, my brain was so foggy! I guess that's what happens when you "mainline" 50 mg! But I think the steroids wouldn't let me sleep, so I was just in a stupor, slurring my speech as if I had partied all nght long! It was a very, very long day - we got there at 10:00 and didn't get home until about 4:30, 4 solid hours of infusion! I'm sure I'll be asleep early tonight.
Hugs,
Michelle
-
I agree - I had alot of "pre-meds" for nausea and I think it really helped me with the AC treatments. I got the Amend an hour before infusion, Aloxi & Decadron during infusion, Amend the following 2 days. had Zolfran at home if needed...I would mention it to your doctor - whatever it takes to help you get through it!
-
Bobbie Jo i did have blurred vision started around the second a/c treatment i am out three weeks of my last a/c and still have it . My eyes also burn and stick together some nights .
Just started taxol today i sure hope it treats me nicer.
-
My eyes are still sticking together. I can't wait til that goes away! I have a rash now. I think it started last Friday, the day after my first Taxol/Herceptin, and it's gotten really bad. It's on my face, neck, chest, and upper back. Ugh.
Suzanne, I would insist on a repeat PET scan. I pray it's not more than an area of healing. The worry rollercoaster that this does to us is horrible.
Taxol/Herceptin #2 of 12 tomorrow. The last one at Fox Chase, then I'm off to Holy Redeemer with a new MO. Taxol is much better than AC. I think the Herceptin is giving me bone pain. I was up half the night with it last night. I'm going to beg for the Aloxi tomorrow. Hope they give it to me...
-
I just had a/c and my lump shrunk down really good barely feel it now from being huge. My doc said today sometimes on taxol it might begin to grow again since i am not hitting it withthe hard stuff anymore .Thats scarey .He said if it does i will do surgery right away but if it dont i get 6 treatments taxol and then surgery .Nest thing he said after surgery if i dont get clean margins and my lymp nodes are involved i will have to do 6 more. BUMMer i wanna be done after these 6. Anyone els have to do more ?
-
That's discouraging. Especially since I have to do 12 of them. I hope mine doesn't grow!!! I won't have sugrey until I am done sometime in December.
-
Rose, you got my rash! My rash was from my scalp to almost my knees. I had to go on steroids. I was thinking it was an allergic reaction from talking to the nurse but my MO told me it's just a reaction, or side effect, of the taxol. Unpleasant, but not health threatening like anaphylaxis shock type of allergy. So I did get taxol #2 today. She also gave me another steroid pack in case I do get the rash again. She said it's 50/50 I'll get it again and she also said it's likely that if I do get it again it will not be as bad, vs being worse. Also having the steroid pack on hand I can take it right away before it gets worse. Booo! I don't want the rash again!! I dread the pain in the ass days, but it got better quickly.
Suzanne, I had all kinds of pain after my bilateral mastectomy. I didn't even ask my surgeons about it because I already knew of a pain clinic that treats post mastectomy pain. My surgeons are out of town anyway. Ribs are an area of post mastectomy pain. My pain clinic Doc is a BC survivor herself, published a chapter on post mastectomy pain treatment plans/cases, and has a couple PTs that are trained/specialize in that treatment. My rib muscles were TIGHT and sore, along with my cancer side shoulder and under arm. Not directly due to surgery, pain was in my neck and back, but the clinic has been treating my whole body to get me back in better shape than before. I've been getting physical therapy all through chemo and my body feels MUCH better. I started 4 weeks after surgery. Try to find a pain clinic with a PT practice that treats post mastectomy pain. Sometimes plastic surgeons are better at recognizing post mastectomy pain and have a clinic or PT they send patients to. Also check with a local cancer organization like a Cancer Community Center, the social worker if your cancer clinic has one, even look for a PT practice that focus on women's conditions. It's disappointing that docs are dismissive of the pain or have no suggestions. PT can be the solution and worth really investigating before thinking it could be mets (based on surgeon MO not thinking mets).
My sticky eyes have subsided. Yay! I am way more hyped from taxol premeds than AC. I think I also may have a delayed opposite reaction to benedryl (what is that called?) so it keeps me awake later. I wonder if I get more steriods with taxol than ac.
Take care everyone!
-
The benadryl outways the steroids for me! Zzzzzzzzzzzz!!! I'm going for #2 today as well. I'm worried about the rash getting worse.
-
Can I whine for a moment? I'm incredibly jealous of all you who have A/C behind you! Yesterday was day 6 of treatment #2. I was so weak in the morning that I could barely go to the kitchen to get a drink. I called my parents to watch my son for a few hours in the afternoon, then my brother took him for dinner last night. I didn't get off the couch the whole day unless I absolutely had to. And to think that, for most, it gets worse??? How the heck am I supposed to go back to school in a week with another treatment to go?
-
BobbieJo - sorry to hear that you are feeling so weak! I wondered whether doing Taxol first would make AC harder at the end. I am so glad I am doing the opposite, and I am glad I'm doing DD because I will be finished 4 weeks earlier. The idea of going to the chemo lounge every single week for 12 weeks is a little daunting. Can you delay your return to school (are you a teacher)? I'm pretty energetic under normal circumstances but the last AC sent me to the couch a lot. And by all means, this IS the place to whine! We might serve up a little cheese to accompany it
Rose - I had the morning/night eye stickiness, too. I'm hoping that goes away with Taxol. That was another reason why I was uber-careful with my contacts. I usually wear them 30 days and 30 nights, but I was taking them out often for cleaning and when my brain was confused by monovision. I hope you get your Aloxi without too much begging. I think you could just tell them you're not accepting chemo without it, and see how they react.
Suzanne - my oncologist gladly wrote a referral for PT - I was having a little swelling on the left side of my back near the area of my TE. It was very helpful and my PT ordered my LE sleeve and gauntlet, and they took care of all the billing so I didn't have to pay a penny.
Justme - sorry you got the news that you will need more chemo after your surgery. Are you doing 6 weekly Taxols? I am SO glad I opted for surgery first - I really didn't want to give anything a chance to "grow" during chemo because my Ki67 was 90% and that sucker was growing exponentially. I probably would have been stage IV in a heartbeat!
Paula - I did NOT get more steroids for the Taxol, just the 6 mg as part of the pre-meds an hour before my infusion. None for the days after, either, so no steroid crash for me.
I have to say that I woke up this morning feeling pretty darn good. No aches or pains (maybe because I took Claritin and I take meloxicam for arthritis so I have the pain covered???). I am aware there could be rashes, swelling, and all kinds of other fun stuff. But I've decided to just skip all that...lol. And I decided against icing fingers and toes. I'm going to count on the supplements to ward off neuropathy and hope I don't get any nail bed separation as I hear that is quite painful. Yup, I've decided...none of this crap is coming my way
Have a great day, everyone!
Michelle
-
If I remember correctly, the bone and muscle aches started about day 4 and lasted to day 6, more intense than AC. Days 2 and 3 I was wired! We'll see if it's the same this go around. I've got errends to do today while I have the chance! I'm also taking my 5th grade girl scout troop camping, over night on Friday only. Thankfully it's a multi-troop planned event, so we don't need to do any cooking and I have parents that will take the girls from activity to activity. So while it's not real camping, it's the first time the girls will be sleeping in permanent tents and doing some camp activities like canoeing and archery. I'm planning on staying put (I'm the camp certified person, so I have to be there), but if I find I'm not fatigued I will meet up with them. It's really the perfect scenario for me, because I would not be able to lead a real camping weekend for 8 girls and a co-leader that don't have camping experience.
Bobbie Jo, AC is fierce. It's a knock out. You may need to make some work adjustments until treatment is over. Taxol makes me slow, but AC stopped me. It's simply how it is. We'll be done soon, but today...we have to listen to our bodies. Fighting it makes it worse!
-
I just got back from having my mid-cycle labs. Like Michelle, my counts are tanked. I am on an antibiotic in the hopes that I don't get sick. I am quarantined for at least 48 hours until the antibiotic can kick in. If I must go out, I have to wear a mask. I guess this explains why I'm struggling so much with the fatigue. Not what I wanted to hear...
Not sure what to do about starting the new school year. I've been off since Spring Break already. I guess I'll call the district to see what my options are just in case my counts stay down. I hate the thought of a sub starting out the year for me, but I guess I need to do what I need to do.
-
LuvRVing i am doing 6 weeks of taxol now and he said if i dont have clean margins and if the lymphones are involved i will have to do 6 more .I really thought i would be done after these 6 guess it will just be a lil more time dealing wth chemo if i do have to go back to the chair after surgery . Then a month of radiation its looking like toward Christmas if thats the plan i have to do oh well the New year will be better.
-
bobbiejo there is no way i could of worked on a/c it was brutal .I stayed in bed at lest 3 days the couch a few days .Then my white blood count would go down and i would get another round of being knocked down finally by the next week i would feel better just to do it again. Rough but roll with the punches and u will be over it. U can do this i am the biggest whimp cancer has ever attacked and i made it u can too.
-
bobbiejo there is no way i could of worked on a/c it was brutal .I stayed in bed at lest 3 days the couch a few days .Then my white blood count would go down and i would get another round of being knocked down finally by the next week i would feel better just to do it again. Rough but roll with the punches and u will be over it. U can do this i am the biggest whimp cancer has ever attacked and i made it u can too.
-
Bobbie Jo - AC is a really strong treatment and I think you are totally right, because you have taxol before this experience must be harder on you. (You can join me in the whinny and bitchy threat whenever you want
) Eyes: Natural Eye Drops. Really helps with the blurry, ichy, dryeness, etc. Believe me saved my life.
Dry Nose: Little Noses Saline Spray/Drops Gentle Mostirizure.
Be on top of your meds and do not wait for the syntoms.
Good luck!
-
So glad you guys brought up the eye ball issue. My eyes have been bugging me since my 3rd A/C treatment. Blurry, have to wear my reading glasses and watery and then sometimes dry. The doc. just said to get eye drops. Have my 4th and final A/C on Monday the 22nd. Then Taxol.
-
Amazing Women - I know that a lot of you are starting on Taxol this week, for us that we are still doing AC everything you share has been precious to be prepare for what is next. I am beging you (especially the ones that are doing 12 weeks after AC) to report your experiences. So far, we know that it makes a big difference to have Taxol after AC. I am trying to give back and find time to share my experiences and I know that sometimes we just can't fit the forums into everything else we have to handle, but I keep posting, because I know that they are our "silent companions", people like me that I was too afraid to participate but I learn in silence from all of you, by following the threads but I did not participate for almost 4 months.
That said, I have my 3rd AC last Tuesday, I felt so good that I had a big dinner that night. Big mistake!!! Everything including ALL the water ended in the toilet. Next day they hydrated me during 2 hrs. before neulasta, and I am going to do it again today and tomorrow as well (trying to protect kidneys and liver). Zofran and Decadron one more day, but again I counting my blessing, normally after day 3 not nausea, fatigue, constipation, pain or any major SE's. My life is as normal as it can be. I have been stopping to take any pills after Day 3 and it has worked great for me.
Okay, I had my period just during my 2nd AC and I am having it again during my 3er AC. ON said is "normal". I haven't eaten red meat for years. I changed my diet a lot of red fed grass organic meat, lentils, kidney beans; peanuts butter, etc. (help a lot with light headaches and dizziness). Good news my WBC, RBC, Hmg and Platelet Count went up to normal! Please take in consideration that in my case my body is not use to red meat, so it really made and impact.
Michelle - Finally I am attaching a picture of my hair. Please keep ruling for me. I took them yesterday and today is Day 31 for me since I started. By the way, I am really confused because my ON and my husband were doing the happy dancing because I have just 1 AC left. They keep saying "you made it" and I keep thinking "Are you crazy, I still have 12 Taxol to go". I am reaaaaaaly confused...
That said, this is how much hair I lost after my 2nd AC...
The good news is that my new hair is strong, these "babies are glued to my scalp"
PCC protocol said that after my 1st Taxol between Day 16 and 25 I will shed again, but a lot of women on weekly Taxol that shampoo their scalps with cold water just once a week with sulfate free, parabeen free, and gluten free shampoo (I use Pure Results) begin growing hair after their 5th Taxol. It's thin, fuzzy almost baby hair but if you do not keep shaving will grow strong. Please, please let me know as soon as your see any hair growing (now, these is completely different for women doing DD Taxol, because they keep losing their hair 3 months after finish their treatment since the SE's are a little bit more harsh their digestive systems take more time producing enough nourishment for the hair).
Good luck to all of you!
-
Did i read here tree oil is good for your nails while dong taxol? I know i read it somewhere didnt i ?
-
Okay- just got home from round two of AC. My eyes hurt. I am nauseated and I have a headache.... And this was after all of the new meds?
Yes, I called and I am going in tommorrow......
It is the cytoxin....I'm telling you - that stuff is evil!
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