October 2013 Chemotherapy
Comments
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Sebaroni -- thanks for checking back in and giving us an account of your experience. Seems like your message is "eyes on the finish line" and I will try to hold that thought. Congrats for being DONE and thanks for coming back to extend a hand to those of us who are just starting. -
I am feeling much better today 5th day post AC treatment. The last few days I was wiped out but so much better today.
Jaybird- we are very close in age as I turn 40 next month. Happy birthday to you
we will get through this -
Hi everyone, just checking in. Feeling much stronger today, day 6 after chemo, day 3 was the worse. I don't remeber any of this but my MO had my husband call the ambulance, my blood pressure was 95/38 and I had a seizure?? I just felt extremely exshausted. I was part of a clinical trial that is working to help with protecting our heart while on Herceptin. They figured out quickly that I wasn't given the placebo and I am no longer taking the study meds. Drs & I don't even know what med I was on since it was a blind study. Doctors did a battery of tests and will do another brain MRI this week to rule out anything else but hopefully it was just the trail study meds. I don't want to put my family through that type of stress. I have slowly started to regain my strength.
The only thing bugging me right now is certain smells and I have D, but taking some imodium and will ask for something stronger if it doesn't clear up by tomorrow.
Hope everyone who is doing well with minimal SE and for those starting this week- You Got this!! -
Oh MY - ML - that is awful scary for your family. You would think that in a situation like that at least they would notify the doctors what you received in order to best treat. I am glad you are feeling better.
My port placement went ok on Thursday - but until today I have had to take pain pills every 4 hours. I have been walking around like I am wearing a neck brace from a car accident. Today I am just taking Tylenol and moving a little bit better. I did not get a prescription for any numbing meds - is this necessary? .
I was trying to have a fun weekend and that has been tossed out the window. Went out with some of my friends last night as a Kick off to Chemo dinner and drinks. All went well except one friend decides to start talking about her "marital issues" and she is the one who was stepping out. I tried to just ignore that end of the table - not to be snotty but my besties got the group together to support me. Today my parents call and tell me that my Dad was just diagnosed Prostate Cancer - caught early. WHAT!!!!! WHY WHY WHY! So, I step up to the Chemo Bar on Wednesday and I am in such a panic now. Do I have everything I should need? What should I take? - oh just knock me out and wake me when it is over! -
Oh ML...how terribly scary!! I hope that you don't have any more problems like that. Your husband must have been terrified! I'm glad that you got to the ER and they got you better! I hope that the rest of your treatment is uneventful!
travlmom...Sorry your friend took over the night out with her issues
And your Dad...oh my goodness! Doesn't it seem that it's one thing right after another? 2013 has been an awful year for me. I hope that you and your Dad both kick cancer's ass! I'm starting my chemo on Wednesday also...I hope we can both come back and report no or minimal side effects. -
Jaybird, I started the AC regimen at the end of August. My fourth treatment is this Thursday. For me, I am tired for the first few days, and get a migraine. I take a mixture of (ginger, lemon juice and Himalayan salts) as well as an oxycodone and it subsides. I get a shot of Neulasta on Friday after chemo and I think that when my white cells are rebuilding, my hips ache terribly. Tuesday and Wednesday after chemo, I feel my worst. Have flu like symptoms and sleep a lot. I also get shortness of breath which frustrates and upsets me. No nausea or vomiting. I also take Ativan for anxiety and it helps alot. In two weeks, I start a regimen of Taxol, and hope the side effects are less intensive, or that I tolerate it better than the AC.
Good luck,
Debbie -
Travlmom - So sorry to hear about your dad. So happy, though, you were not scheduled for chemo the day after getting the port. I remember all too well, that it took several days for it not to hurt anymore. As far as numbing medicine, I did not find it necessary. When the nurse accesses your port there will be a needle stick. But it is not different than any other needle stick. I know people that use the cream, but you have to put it on sometime beforehand and keep it covered. I just thought it would be more trouble than it was worth. You will want to take some very strong mints with you, however. When they clean out the port before and after the treatment it will send an awful taste into your mouth. In my chemo-kits, I give out Mintz (in the bright blue tin) from Trader Joes. those were the only ones strong enough to take the taste away. It is worth getting a pack.
Debbie629 - The Taxol treatment course is like night and day with the A/C. There will be muscle aches on days 3 through 5 that make you feel like you have the flu and just worked out for four hours, but it goes away and leaves nothing in its wake. Pain meds and Ativan will get your through those days. Taxol does mess up your nails.. They turn yellow and get weird. If you are only having 4 treatments of Taxol, it won't evolve into much beyond the yellowing. There may be some neuropathy, too. Expect your fingers and/or toes and ankles to get tingly. That was only minor for me lasting just the night of treatment. But some women I know have it worse. Of course, they are on the 12 times once a week regimen. So if you are only doing 4 it may not be too bad. -
Sebaroni - thanks for the hint on the mints... What all do you put in your chemo packs? -
Good evening! Are there special shampoo or shower gel etc during treatments that we need to be concerned? Regular hand lotion all okay?
My Oncologist said normal cosmetic that I have been using are all good. She made a great humorous remarks that she "did not usually ask her patients to stop looking pretty....." I love her attitude!
Jen -
I am a fan of both the Emla cream and the freeze spray for port access. All you have to do is put a blob of the cream on the port and put a piece of plastic wrap on it an hour before you leave for the appointment. I never felt the access if I did that plus the freeze spray. My port is very small - it is in plain view (subclavian) and most people can't see it, so some onc nurses found it hard to access - I would rather not feel the digging around. It is a personal choice.
Here is a link to a site that lists ingredients in cosmetics, shampoos, lotions, etc. I made sure to eliminate things that many ER+ people do not want to be exposed to like lavender, soy, and things that cancer patients in general should avoid such as parabens. I like this site because you can look up products specifically and get the number rating, or look up by category to find a well-rated product. -
Today was a good day. Did the 4K walk at the Komen race for the cure with family/friends and 15,000 other people. There was a procession of survivors as one of the events, one lady was a 36 year survivor, i think she was 89 years old. My friend wanted me to sign up as a survivor, so I could get lots of free stuff, but I was in denial when we registered and didn't want to be acknowledged as a survivor. I made it a goal to run the 5K next year and I'll be wearing a pink survivor shirt.
Kellee318 - thanks for the advice on ACT. I'm going to tell my Dr. Tomorrow that's what I decided. I'll be thinking about you on Wednesday.
Sebaroni - I'm be sure to ask my Dr. About DD 4T. I didn't even know that was an option.
Wish I had more time between the port surgery and my first chemo. Port surgery is Tuesday at 7:30, chemo is Wednesday at 10:15. I'll be five weeks post-op, so I'm ready to get going with the next phase. -
Hi all! Like you, I started my chemo recently (first treatment was 9/27) and am trying to adjust to the whirlwind. I was diagnosed on 9/10 after seeing my OB about a small lump on 9/5. Three weeks later and I'm in the chemo chair! I'm still reeling I think.
I am on a weekly dose of Taxol (for 12 weeks) followed by AC every other week for 8 weeks. I had my second dose on Friday and am starting to feel some side effects Been really tired, sluggish, and lethargic with serious muscle aches and lightheadedness. A little nausea (day of chemo) but mainly a kind of loss of appetite/smell sensitivity. It's been super difficult because I have a 15 month old son and he is so active. I know it's only going to get harder and harder to play with him
Also cut my beautiful long hair short this past week....ugh. Haven't had the strength to go wig shopping, but supposedly I have some time on the Taxol. My brother's fiancé works as an esthetician and recommends this site for product info for those of us on chemo, especially the Relief Spray: http://cvskinlabs.com/skin-conditions/side-effects-of-chemotherapy-and-radiation/ I
I'm mostly...scared....of what's coming....of how it's going to get worse and how long it all takes. And of course everyone is saying that i'll be ok and "get through it" because I'm so strong. But all I can think is how everyone is looking ahead to when this will all be over, while I'M THE ONE who actually has to go THROUGH it.....ya know? -
@ms.Jean: We are starting chemo at the same time! My big day for everything is Wednesday. Like you, I don't have any time between port placement and the first chemo. I'm not sure how I feel about it happening that way but hey, at least we are getting it done all at once! Good luck to you on Wednesday. I hear that the anticipation is worse than the actual event. I'm also 5 weeks past surgery and like you, I'm ready to get this started.
@kittykate: I understand your fears because I'm right there with you. Just remember that everyone reacts differently. I know what you mean about everyone saying it'll all be okay and since you're strong, you'll get through it fine. At least for me, I'm a little sick of hearing that although they are right and mean well. (((hugs))) to you!
When I first found out about my diagnosis, I called an former colleague of my husband's who had breast cancer 5+ years ago. She now lives clear across the country. She gave me the best advice that I try to remember. She said to always keep in mind that my journey with this is completely my own. No two stories are alike and I should never compare myself to what happens to someone else. Good advice, I thought! -
Hi Ladies,
This is my first time posting. I was diagnosed on August 5, 2013 with stage 1 grade 3. Boy, I wasn't expecting that kind of news. I really thought that I had a cyst that was inflamed as my breasts are very cystic. My first week of excepting the news was not very good. I went to my primary who got me on Lexapro and Xanax. I take Lexapro every day and it really helps with my anxiety. I am down to only taking Xanax on the night I have treatment to help me sleep. I also take Claritin starting the night before my treatment and for the 3 days following it. It helps with SE from both chemo and the nulasta shot.
My first treatment was September 25th. I am getting 4 AC and then 4 T every other week with the Nulasta shot on Thursdays. I wish someone would have told me how bad the SE could be, but those I spoke with said "you will get through it", "you are strong" etc. Well, the Thursday after chemo was good, Friday I stared to get nauseous and since I couldn't take the Zofran for 48 hrs after chemo, I took a different nausea medication that made me extremely tired. I had to leave work early to go home and take a 3 hour nap! Woke up, had some soup and back to bed it was. Saturday was my worst day. The nausea set in big time, dizziness, vomiting and so many other SE that I told my husband I was never going back for another treatment! Of course I am going again on Wed, because when I woke up on Sunday, I felt like a brand new person! I guess I just wasn't as prepared as I thought I was. I now know what to expect this coming weekend and I am hoping that I can once again get through it.
As for my hair, I had it shaved 9 days after my first treatment. I had major anxiety right before getting it done, but once I saw myself without hair, I felt like it was a beginning to an end. I wear my wig to work but then take it off and go bald for the rest of the day and for the weekends. I did try scarves, but that just isn't my thing. Hubby and I went out and bought some cute hats. Can't wait to wear them!
Thank you for starting this post and for all the experiences shared. -
Good Morning!
Travlmom - In the kits I make, I put the following items: Avon Care Deeply Lip Balm (no perfumes, no dyes - I love it. Also, Taxol dries out the mucus membranes and it is great to put on a Q-tip and rub inside dry, hairless nasal passages); Extra soft toothbrush (gums may be very sensitive and bleed, EXTRA soft toothbrushes will help); Mintz (Trader Joes - to take away the awful taste of the Heparin when they clean out the port); Biotene Mouthwash (Your mouth will be very dry, this is like Chapstick for your mouth. I used it all the time.); CeraVe Hydrating Cleanser and Moisturizing Cream (Chemo will dry out your skin. It caused my wintertime eczema to come back and this stuff cleared it up. I will never use anything else!)
JenSF - You will not need any shampoo as your scalp, without hair, will be fine with regular cleansers. As I mentioned above, the chemo will make your skin very dry. I was using Cetaphil cream before chemo and it wasn't strong enough. When I switched to CeraVe, it made a world of difference.
If those of you starting on the journey would like to check out what I went through, please feel free to access the blog I set up for my family and friends at Be Careful What You Wish For - My Breast Cancer Journal
People told me all the time how strong I was while I was going through everything. I didn't really feel all that strong, just someone trying to get through another day. People would say stuff like, "If it were me, I would just crumble." That's just not true, we all have an amazing ability to take what is thrown at us and do what is necessary. It is our survival instinct. It's just that the way we choose to approach survival may be different. Some people like to act as if nothing changed, they still work full-time, take care of their families, don't ask for help and go about life so no one knows. Some people close themselves off and deal with it on their own. It is a trying time, to be sure. For me, I learned to accept the help that was offered and gave myself permission to take care of myself. Some days that meant laying in bed all day. Before all this I would automatically say "No, that's okay, I can do it," whenever someone offered to help me. Now, I say, "Thank you that would be great." I was never ashamed or afraid to go out in public, if someone approached me with questions, I was happy to talk about it. You have to do what feels comfortable for you. -
Deb are you getting your chemo at the cancer agency on W. 10th? Sorry you didn't get a lot of information. I didn't get much either and was seen mostly by a resident and then the MO came in for the last few minutes of my appointment. I actually didn't get any information from surgeon either and wasn't told I had triple negative. Everything I learned was from this site.
I hope you get some answers. -
DebDylan - I got mouth sores one time. If you use Biotene, that will help. If you get them anyway, ask your doctor for "magic mouthwash," it will help. The steroids with A/C are in the IV and some doctor's have you take them orally the days leading up to and after the treatment. It is supposed to help with the nausea medicines. -
debdylan - the reason people get a port for AC is that the drug itself is a vesicant and can burn your skin and damage the veins if it leaks from an IV. The oncology nurses need to be exceedingly careful when they give you the Adriamycin as a bolus to your existing IV (a syringe of the drug injected into the IV line). For mouth sores you can hold ice chips in your mouth during infusion, use Biotene products, get a prescription for "magic mouthwash" or one for Caphosol. Chemo brain is pretty common and usually resolves once chemo is done, but can linger for a while - it is characterized by forgetfulness and a foggy feeling. It can also be exacerbated by fatigue and low hemoglobin. Are you sure you are not getting steroids in your pre-meds? It would not be given as an injection, or shot, it would be a small bag infused through your IV prior to receiving the chemotherapeutic agents. I did not take any steroids prior to chemo, or after, until the third infusion when I developed a rash. Not all oncs use the before, during and after approach - but the vast majority do give them on the day of chemo. Look for Decadron or Dexamethosone in the pre-meds - that is steroid.
On the subject of using mints so that you don't taste the Heparin when they flush your port - you can use a flavored candy, or hold your breath and literally hold your nose - the reason I say this is that many who are having issues with heartburn can make it worse by using mint flavored candy or toothpaste. -
Thanks! I had my first A&C end of September so tomorrow (Tuesday 8th) will be my second infusion. So far so good! -
Hi Oconnor
oh that is a long haul! I am in NH & met a gal last week at the Seacoast Cancer Center who had her surgery at Mass Gen but is having her treatments here.
Good luck to you! I got tomorrow for my second infusion. Doing A&C every other week & the first one went well. -
Thanks I am an antiques dealer! Mostly deal in vintage furniture, that's where the name came from. (well I am almost 60 years old so guess I am vintage too)
I have 4 infusions of A&C then 12 of T&H.
Long road ahead!
All the best to you! -
How are you doing this week JayBird? -
Hey Justaskmom
how are you doing? We have a similar treatment I think? I have 2 months of A&C, then 3 months of Taxol & Herceptin...followed up with Neulasta after each...then 9 continuing months of H.
When will you make your decision between the two *T* drugs? My decision was between East Coast & West Coast. Being on the East Coast I went with tried & true!
"
adriamycin and cytoxan for the first four appointments and then switching to taxotere or taxoll (sp?) for the rest -
debdylan - if you are receiving pre-meds and Cytoxan prior to the Adriamycin you should be able to tell if you have any leakage with the IV in the vein - that should be a good indicator of whether it is set up correctly. When they hand your pre-meds look at the little bags and look for the drug names - or ask the nurses what they are giving. I asked them and looked every time - and I had 7 different drugs for the first 6 treatments, and one drug for 11 more. Also, with AC I am not sure that whatever they are giving you by IV will give you 72 hours of anti-nausea protection. I received steroids and Aloxi by IV but started with Zofran/Compazine/Ativan - any of the three depending on whether they were working - the same evening as my treatment. I would make sure they give you something for at home consumption. -
Hi Pam358
how did all that go? I had some done before chem & the ct scan & bone scan done after my first chemo. My *team* just didn't move in a timely manner it seems. I was frustrating that all those tests weren't scheduled in the days awaiting chemo.
Hope all went ok for you. -
Hi vintagegal,
I am doing well this week. Thank you for asking. No more headache or nausea. This is day 5 post first AC. Actually feel normal if that is possible. Well I am constipated though. Probably from all of the medication. But that I can deal with. Just keeping my fingers crossed that my side effects will remain minimal. How are you making out so far? Janet -
GOOD! We have to remember to take the stool softener, and munch on prunes! :>)
The last week or so was good for me too. I did have a slight set back from the drink I had to have before the ct scan last week, had a gluten reaction though they said there was no gluten listed. But that brought on a reaction I get in my mouth, plus diarrehea & migraines.
VintageGal -
Welcome Bellyboo and KittyKate!
ML40 - so sorry to hear about your low blood pressure and seizure. That would be so scary. I, too, hope it was just the trial medication and that it's all over and done with and it's not anything else. Good Luck with the MRI.
MsJean - I didn't have to make a decision about what chemo I would be receiving - I did have the choice between every three weeks and the dose dense version of every other week. It seems that we share similar diagnosis and my MO went with ACT (Adriamycin,Cytoxan, Taxol) There were so many other decisions I'm glad I didn't have to make that one.
Oconnor - October Chemo Queens - I like it!!
Travlmom - sorry to hear about your Dad's cancer diagnosis - sheesh wasn't one in your family enough!
Deb - the port does seem to be a personal choice. For many their veins are just fine and they would rather not have a port. For me, blood draws are fine but putting an IV in can be a real challenge and I didn't want to deal with that. As far as the anti-nausea meds my prescription reads "take every 6 hours for 3 days, then as needed after that. I have it ahead of time for Wed just so I have it ready to go. Usually they give the prescription that day but my pharmacy and my MO are in two different directions.
The follow-up pelvic ultrasound that was ordered after my CT Scan report did not indicate any cancer :-) I was supposed to receive the results in 3 days but had to follow up with a couple of emails to finally get the results from a covering physician as my gynecologist was out until 10/14.
It looks like there is a large group of us getting chemo on Wednesday - that is my start date as well. I will be having 4 dose dense AC followed by 4 dose dense T if all goes as planned. Just like the rest of you I'm a bit anxious/scared/terrified (depending on the moment). I can't wait for all of us to write that it was less scary than we had imagined. It's not the actual process that scares me it's the possible reactions, major side effects that are most scary to me. I've had my port accessed once for my CTScan so I know what that's like. I have been in one of the rooms where I will get my infusion, so that's checked off the list. It's a small clinic so everyone gets a private room.
I'm picking up clippers tomorrow from a friend and will shave my head at some point after the first chemo and before it comes out in clumps - maybe for my birthday on Friday. I already cut it short 3 weeks ago so I could donated the 11 inches to Locks of Love instead of just watching them pick it up off the salon floor. It at least felt like it had a purpose.
Best of everything to those getting chemo this week - may your side effects be easily managed! -
BellyBoo - glad to hear you are going back for another treatment even though you had so many side effects. Some have said they schedule their anti-nausea meds after their chemo for the first few days and even set the alarm to take them and others have mentioned making sure to eat something - even saltines and that has helped them. You are actually one chemo ahead of me so I haven't tried the advice but thought I'd pass it along. -
Good luck tomorrow Pam. I hope your chemo goes smoothly with manageable side effects (or none) :-)
Thank you for all the support you show to all of us. You've made things easier for us. Take care of yourself. sending cyber hugs
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