Starting Chemo June 2014
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Cammy, my first 4 days were the worst with each day getting a little better than the day before...I was sick for a week but each day gets better. Day 4 was hard for me cuz that's when my prescription meds stopped. I have emend for the first 3 days and it works well...maybe I will ask for a couple more days on it...was much better bye day 6.
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Canuck - are you on A/C? I don't want to alarm you, but one of the things I was told to call about during my chemo class was swollen ankles. It can be indicative of heart issues. Adriamycin is hard on the heart, and can lead to congestive heart failure. It could be as simple as you're retaining water, but I would definitely call, especially if they're painful. Please don't take any chances. I really hope it's nothing, but with all this stuff coursing through our veins, I'd rather be safe than sorry!
I had my follow up this morning with my onc, since he's going to be on vacation (lucky SOB) when I go for round 2 on Thursday. Got the results of my genetic testing back. No mutations. So I have no family history, no mutant genes, and it's not fueled in any way shape or form by hormones, being a big fat Triple Neg that I am. I need to play the lottery, b/c really, what are the freaking odds?
I'm really starting to put credence in the theory that it can be brought about by stress. I've been told by my onc that he thinks it's been in my system 5-6 months at the most, due to it's aggressiveness, sizing, etc. Well, the last 6 months have definitely been the most stressful in my life. Lost my job in Dec, my Dad unexpectedly in March, and then this. Couple that with starting my own business, slight relationship issues, and just general life stress. It wouldn't shock me, to say the least. Since I have no other rational explanation for why this happened, or what caused it to happen, I don't have a better theory, yet.0 -
Today was my 2nd AC treatment. So far I feel ok, just a little tired. I still have hair which is weird because they told me I would lose it at two weeks (3 weeks today). I've also had several hot flashes this afternoon. Anyone else have them?
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I've had hot flashes from the steroid. I'm not on AC though, just Taxol/Herceptin/Perjeta. I find that the flashes occur about 1 - 2 hours after each steroid dose. Then they go away, thankfully!
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I had my 2nd week dose (Herceptin only) yesterday. Started the full cocktail on June 23rd. SE's I've experienced: nausea (controlled by meds), profound fatigue (last time I napped this much I was about 4 months old), no taste (in food, not in clothes), acne (this is just rude at my age), loose bowels (managed), flu-like aches, blurry vision (I had to ramp up my reading glasses)(then again, who cares, I'm too tired to read) and hot flashes that have scorched my sheets. That was week one. I actually do feel better and am thrilled that I have a week and a half before I get the next cocktail. The Herceptin alone is a piece of cake in comparison. Has anyone else got acne over this?!? I'm telling you, I looked better as a 13yr old than I do right now!!!
One down, 5 more to go. Hang in there everyone!!!
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Thanks for letting me know Kimmy..I never knew swollen ankles were indicative of a heart problem. I will talk to my oncologist...they did an ECG and ultrasound of my heart before we started because I have heart palpitations...hopefully the AC isn't causing heart trouble. So scary.
Hiking...I have acne too. Like the 'gonna go bald and fat from chemo' wasn't enough, I've got to have zits too!
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Hikingandhorses, First off, do you ride? I leased a horse a few years ago, and i miss it! As for your acne question, I did find that I broke out after my first herceptin/taxol/perjeta (I've only had one THP with weekly T, go for my second THP today). That was my wake-up call to take better care of my skin (something I've not been very great about in the past). I now wash each morning, use at toner, use lotion, and so on. After losing my hair, it's freed me up to work on my skin. I haven't had a breakout since, but we'll see what happens after today's treatment. Also, for the taste issues, try gargling multiple times per day with salt/baking soda (if you aren't already) and use Biotene toothpaste/mouthwash. I was on the verge of mouth sores and funky tasting food until I started doing that and now my taste is as near normal as it could be. Lastly, my acupuncture person told me to do coconut oil pulling (basically swish around a teaspoon of c-oil in your mouth for 20 minutes) it works as anti-inflammatory and pulls toxins out. I cannot do it for the full 20, but I imagine any little bit helps. Good luck!
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I have a serious question? Does it seem crazy if I ask my doctor to cut the 12 doses taxol to 4/6 doses? I feel like I am appreciative him wanting to be aggressive 4 AC 12 taxol, full hysterectomy, 10 years tamoxifen is a lot. Am I wrong please help
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Cammy, 12 Taxol is pretty much the standard, unless you're doing dose dense, then it's 4 treatments. Some docs prefer to give it 12 vs 4 b/c of the side effects, but it's the same amount, to my understanding.
Why are you having a full hysterectomy? Is it because you have family history or BRCA mutation? Mine is triple negative, so I know nothing about the hormone part. I just know that if my BRCA had been positive, they would have recommended a hysterectomy for me, as well. But I'm negative, so my ovaries are safe for the time being.
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yes hysterectomy I am brca 2+
I guess I am being a whimp. Lol0 -
you're not being a wimp Cammy. I question the chemo almost daily...hang in there...the alternative is worse. I have a friend who has been stage IV for 8 years and has been on chemo for almost that long...unfortunately she doesn't have much time left. You do not want this to come back...ever. What scares me is the possibility of leukemia...heart problems..if only we could see our future.
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2nd Ac was Tuesday, Neulasta today. I feel good. My onc prescribed calibration for the acne/backne the steroid seems to be causing. It's a twice a day topical and it's already helping.
My hair started coming out in clumps Monday. By Tuesday I got hair all over me every time I touched it. My cousin shaved it that evening. I couldn't stand shedding all over myself!
Onc also said my headaches are from the anti-nausea drugs...told him I'd rather have a headache than be nauseous. He told me to take an Advil! Lol
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Radical2 we are on the same schedule, except I finished #4 AC yesterday. I thought it was the Nuelasta giving me headaches, and I agree I would rather not be nauseous. I shaved my head when I could grab clumps and found it to be a great relief.
Cammy, you are not being a wimp! These decisions are really hard and it's a ton of overwhelming information to deal with in a short period of time. For me, I was actually glad my stage required chemo - throw the book at it. I am not BRCA positive so I can't say much about the treatment, but getting another opinion wouldn't be wrong. It's totally okay to be feeling the pressure, and again, you are not a wimp.
Ready for bone pain, this time I took the Zyrtec, hope it works better than the Claritin!
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Cammy, I replied to your last post but then I felt it was a bit negative towards our situation. I have the same doubts as you do but as my surgeon said " with your triple negative, nobody is going to tell you not to do chemo..you don't ever want this to come back, ever!"
I think chemo may shorten my lifespan but it will give me years I would not have had otherwise. So I guess I will do all the treatments I can as well as stay on a good diet & exercise program and hope for the best outcome!
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Fionascotti… I have burning too.. I have a uti as well as other infections right now. (white blood cell count went really low) I will try the spray bottle of water that was recommended.
Radical2Squ… I would rather have the headache than the nausea too! I think I will be getting my hair shaved in the next few days!
Had a rough few days,Very tired and weak.. still feeling nauseas, but think that might be due to having a few infections. Worst one is in my lumpectomy site. See the PS tomorrow to decide if he wants me on IV antibiotics.
My hair falling out has become my new obsession ..lol I keep checking it now it has started.
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I told you all I shaved my head...I had my cousin do it (he's been bald for years) and we walked the neighborhood bald together afterward. I kinda liked it! I have hats and such, but it was 98 degrees out! I didn't want anything on my head!
I started sending bald pics to friends, then finally bit the big one and posted it on Facebook when my friends were responding well. I got back tons of pictures of Jessie J, Sinead, and Demi Moore from tons of people. My ears stick out, so I kinda look like G.I. Jane with wings but I still thing I'm going to accept this bald thing! It's kinda nice to NOT have to style my hair!
I'll use hats for Sun protection but just a ball cap. I was previously so scared about covering up enough so you couldn't tell I was balled! If I have a self-conscious day, I'll attach one of my hair halos to the hat!
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just a quick fly by..the Zyrtec seems to be working as my bone pain is minimal, headed to work! Yay. Have a great day all.
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So for the others that have done away with your hair - did you all go straight for the shave, or did you buzz cut? I've heard it recommended both ways. I saw your post, Rads, so I know you actually shaved it down to cue ball style.
I'm planning on getting mine buzzed tonight, because it's been shedding like crazy the past 2 days. Wasn't sure which clipper guard to go with. I've heard anywhere from a #1 to a #3. Might split the middle and do #2. I know those suckers that are left are still going to fall out, but I just don't think I can go from shoulder length to cue ball in one evening. Round #2 was this morning, 6 left to go. It makes me feel better to think of it as being 1/4 of the way thru chemo.
Hope everyone is doing well... I'm off to take a nap.
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Radical2Squ… I love that you sent out pictures to friends and then uploaded to FB. I might do that. I think everyone is so supportive of us, it can really lift the spirits and give us that little bit of a mental strength boost just when we might need it most.
Bow1965 Glad the Zyrtec seems to be working for you!!!
KimmyD78 I think I am getting my hair cut/shaved tonight too. My little girl wants to cut it first, then my husband will shave it but am not ready for the bald head just yet so might go 1/2 an inch..lol.. am a bit nervous. Part of me just wants to get it over with as mine is shedding lots and coming out in chunks if I touch it, but I know once it's done, it's done, no turning back.
Went back to the hospital today and my boob is so swollen and sore. Dr drained off a lot of fluid and sent off for testing. Put me on another two different antibiotics and drew around the infection and said I will need to got in for IV antibiotics if it spreads. I go back on Wednesday for an a ultrasound once the antibiotics have a chance to work. Hopefully it will all be ok by chemo day on Thursday.
So I am going to a Look Good Feel Better class next week! I am excited.. anyone else been or going to one ?
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Ran my hands through my hair last night, and realized I was starting to shed. My husband said he had noticed a lot of hair in the shower, but I hadn't noticed yet. Tonight, we went out for dinner and about halfway through the meal I noticed a hair in my dinner. Two seconds later, I realized the hair belonged to me. I'm done with it already. My friend is coming over in a little while, clippers in hand. Buzz buzz!!
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Hair shavers - get some pure coconut oil to put on your head - the stubble is a prickly nightmare and my head was very tender, probably an se from AC or Neulasta. I also bought a soft nightcap online, maybe from headcovers, I still wear it every night it keeps my head warm.
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Hi Ladies,
Thanks for all the hair posts and hints and tips I am starting to shed a lot, but not ready to shave the pixie cut yet. I'm sure it won't be long.... It's short enough now that i will probably wait until it starts to be noticeable. Part of me is fantasizing that it will just thin out....the nurse at my first infusion said it was possible, but unlikely. Guess I'm hanging on to that remote possibility for a couple more days. Ha!
Radical - I love how you are embracing the new look.
JD - I am signed up for the class on Wednesday in Chicago. I was pretty cranky the Wednesday after my first infusion, so I hope I feel up to it next week. Whay day are you going? Hope the anti-biotics do the trick and you don't need the IV.
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Cceandme I have been told the same thing about not shaving too close. Shaving mine tomorrow.Lynndeidre Same thing happened to me.. was out for lunch and noticed my hair in my plate and on the table. ..then I wrapped it up in a napkin and tried to hide it in another napkin.
Bow1965 I will try the coconut oil. I read so much about coconut oil being good for so many things!
Grace3Boys I have been holding off, convincing myself it would only thin out. It has thinned out..lol but its still thinning. .My class is on Monday in Indianapolis. I originally was going to one later in the month but decided to go to this one. and I am really looking forward to it. I think my white blood cells are on the up as I feel a bit better, so maybe the infections are already starting to clear up!
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Checking in...Radical - so inspired about your head-shaving. I think you have such a great attitude!
Thanks to the rest of you head-shavers for your tips..I'm 13 days out from first infusion and not ready to shave just yet...am on holidays at the family cabin but brought the clippers just in case..I'm going to shave as soon as the clumps start falling (I already cut it from really long hair to 2 inches short to get my 3 little ones used to it).
Jdmac...let me know if you like the class..I've been planning to go myself but not signed up yet.
Side note - got my visit from Aunt Flo today...grrr...couldn't I at least get chemo pause?
Goodnight All.
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i started on June 6 and yesterday I completed my 3rd round of chemo (A&C yesterday. On the whole my good days are more than my bad days.
These symptoms came up: poor appetite, mouth sores, and bone pains . Many of these were nipped in the bud.
For taste and appetite: I make good smoothies with plenty of kale/spinach, carrots.and blueberries with flaxmilk and plant-based protein powde (Plant Fusion is non GMO, non-soybased)...knowing the beneifits of these smoothies I tend to drink this down quickly and they really taste quite good. Using ginger, garlic, and a dash of sesame oil helps to turn on my appetite and take away the metallic taste,
Mouthsores went away each time I used the mouthwash prescribed by my dentist (who coordinated with my oncologist) - I was prescribe with Chlorhexidine Gluconate Oral Rinse
Nausea and bone pains subsided with acupuncture. I was fortunate to get a call from the head of Integrative Medicine who is a good friend to a colleague of mine. There is a good chance that insurance will approve it as a treatment for nausea resulting from chemotherapy.....if it does not get covered...I will have to stop.
My new problem is that my red blood cell count is too low, and I was asked to go back in another 2 days to take another test. It's possible that I need a blood transfusion if not.
Than, I want to talk about my hair, much of it fell off on day 12 and I was in the office. I kept pulling chunks of them and throwing them in a box and cried even though I knew this was going to happen. Fortunately my mid-length hair at the top of my head was very much intact and hid the blank spots well till the next day. My step-daughter and nieces came by to see me get my GI cut. Than I fought my pride and showed up 2 days in public with much of the hair having falling off after the cut ...and no scarf. It was liberating. I used make up and awesome earings and stood tall. My husband came home bald and surprised me. I had prepared by buying 2 wigs, and till today have not use them. I now go to work with scarfs on my head. I think this look is fine for me....very comfortable. I also feel that I am not hiding the condition...I am just being me.
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Reason why I posting messages at this time is that I had slept for hours before this....am going to shut down soon.
Radical2squared and JDmac1199, excited that you are posting on FB your bold new look. If you or anyone else is interesting to share your pictures, I have a FB page #decorateyourhead (no spaces) under my FB name Howe Starks, share it using the #tag....not sure you have to send me a friend request first...I will accept! I have not posted a bald picture but intend to work on one this weekend.
The idea/movement was created by my stepdaughter, a social media advanced student. We discussed created a page for all fighters of cancer to make a statement by doing something radical with their hair in support of those who will lose theirs, to take the opportunity to connect and re-state that "Cancer Can't Win". We gave it a fun element and didn't require any one to cut their hair - just do something crazy/different. People from Singapore, Germany, and other places in the U.S. have responded. I intend to post a comment at some point to acknowledee everyone and to remind all who support to focus on their health and wellness. Hope my new found friends on this site can participate!
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Good for you HoweFun for standing tall...I am wigging it at the office and wearing buffs and baseball caps otherwise. Funny, the only time I felt completely intimidated was when one of my daughters friends stopped by - a fifteen year old who is always impeccable. Haha, I got over it, she's kind of shallow. Can you eat meat for your red cell counts? We don't eat much at all (like hamburger or steak once a year) but I have been craving, so I indulged this week on chemo day.
Canuck I too have been getting my period with each treatment...I'm 49, thought this would end it for sure! It's cruel and unusual punishment in my opinion.
Day 4 (I guess, I had chemo on Tuesday) and I feel okay, woke up with the headache but minimal bone pain, no nausea at all this round, and staying regular. On that note, I am taking 2 Colace morning and night, and one Sennacot at night starting day before chemo and for about 4-5 days after....has worked like a charm. My chemo nurse gave me dire warnings about constipation and freaked me out!
Have a great fourth all!
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Howefun,
I'm with you on the liberation aspect of the whole hair thing! I'm a single gal and you would not believe the male attention I've attracted! Lol The explanation I've gotten is that there is something very attractive about a woman who owns her issues and fights them proudly. It's all in the attitude and holding your head high just as you said!
Your newly bald husband made me cry! I'm thankful you have such a special man in your life! That is love and support!
I'm off to find your fb page!
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Thanks for your note! Yes courage is beauty in itself. I didn't know till now. My husband had long hair in locks and just went to the barber to get it all off! I just accepted two new friends on FB...am sure you are one of them!
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