Starting chemo August 2014
Comments
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Hi Kelly Ann,
Yes we will have to compare notes on SE's. Are they adding carboplatin to your regimen with the taxol? I was not going to have the carboplatin originally but my MO decided to incorporate it to keep up with the latest TN research.
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Thanks for the tip on the Lidocaine cream /EMLA. I called my MO for a prescription. I agree no extra pain when it is not needed :-).
My MO indicated I should try Pepcid or tums or something like that to settle my stomach along with the anti-nausea meds. I was switched me to compazign (sp?) as Zofran did not help and also gave me terrible headaches. Any suggestions on what has worked best for acid in tummy?
Strongenough, yes I agree to use "temporary" normal instead of "new" normal as we will get through this together. How are you doing now?
Port site and neck still a little tender and neck but hopefully it goes away with the Tylenol I just took. I will shy away from Norco until the chemo days since it makes me non-functional and very loopy and I want to have fun today :-).
Gatomal, JustAmy, LLizz and Hope50 how are you doing? Hopefully bouncing back. Thinking of each of you and everyone just getting there treatments.
Jaycee, JetGal and SLB how are you doing? Oceanbreeze glad to hear from you!
Have a great weekend August Ladies!
-Angie
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Hi Ladies,
Well several inches are now gone from my hair. My hair now hits my shoulders...that is about as short as I could get myself to go. I loved it at the salon but now I'm home and I'm really bummed to not see my long hair. I don't envision having hair much longer..today is day 10/11 pending on if you count the day of treatment or day after and no hair loss. I'm thinking day 14 it may start and that is Wednesday. At least my stylist was able to cut bangs in my wig.
Ugh, this sucks...
Hoping everyone is having a good weekend a side effects are kept at a minimum.
Take care,
Karina
Ps..thanks for letting me whine about my hair.
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Sounds like you got thru chemo ladies and are taking well deserved advantage of feeling good. Listen to ur bodies and rest when u need to. If u even think u r feeling nausea take ur meds as a preventative.
Purplegurll - I am also a morning coffee drinkers, but surprisingly my taste has changed since treatment. They say caffeine at this point in time is not good, so if I have anything it's decaf or half/ half.
Hang in there and take care.
Cathie
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we aren't suppose to drink coffee once we start chemo? Oh no! I'm use to 3 cups in the morning.
Purplegurll, I will ask about that. She never mentioned anything with the Taxol. Wonder if it goes with the type?
Karina, hang in there! I have shorter, to the shoulder bob, and felt I needed to keep that so bought my wig. As soon as I get the tingle feeling, I'm shaving my head with a #8 at my salon. I don't think I can handle seeing it fall out.
Ladyb, glad you got the cream! I know I take Claritin the morning of chemo and Dexamethasone the three days following. I also have lorazepam and prochlorper but I don't know when I take those, just says every 4 or 6 hours. I will ask on Monday.
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Hey Everyone,
I got to say that I enjoy reading these postings much more than going to my AA meeting today and having some random guy list off all the terrible things I should expect.
Thanks, Guy. Not.
Anyway, yesterday was my 5 month anniversary to my husband! We forgot though.
Our first monthly anniversary that we forgot. We will not forget anymore!Today I'm having some nausea, taking Zofran and still able to eat a little, achy and intense headache, but no migraine. I'm trying to drink a bunch of water today, because I've already had to take 2 Immodium.
My first 3 days after chemo, I couldn't poop to save my life and now I'm having the opposite problem. Yikes.
I cut about 13 inches off my hair, last week, but I need a new haircut. My husband has asked me to put it off as long as possible, but I had a nightmare last night that my hairline began receding all at once to the back of my head in public. lol.
My scalp is tingling today, but I'm trying not to think too much about it. I've decided to include 2 pictures here. 1 is from my wedding in March. The other is from my first chemo treatment.
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Kelly and Catie, I did not know caffeine was "out" altogether during treatment. I lost my desire for coffee today (I always did when I was pregnant as well, it has to do with that queasy stomach feeling) but did drink two glasses of coke today to try and head off that caffeine withdrawal headache! Guess I need to ask the question too about caffeine during chemo!
Karina, I totally relate to your feeling about your hair. The last time I had short hair was in 8th grade when I got a Dorothy Hammill cut! Does anyone else remember that or am I really dating myself
) And I can say short hair is NOT a good look for me. So when it comes time for the wig salon to buzz my hair, I know I will be sad. But as other ladies have said, this is only the temporary normal. And we will get through it together. Take care,
Robyn
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Thanks for asking about me, ladyb. DH buzzed my hair today to about half an inch. When I was a kid, I was a tomboy. Now I don't wear a bra and have no hair...a real boy. I kind of like it but it gets cold when the AC is running. My GI system seems to be reacting to the Herceptin alone that I get on the 2 in between weeks. It seems I never get a break. Every week, something is pumped into my body. I'm trying to ignore it right now. Big 3 drug number 2 is next Tues. and I'm not looking forward to that. I am more prepared with Imodium multi symptom and Bentyl, an idea from Mag in the July group. The best moment was right after DH buzzed my hair, he told me he was so proud of me for the way I am handling this. I'm tearing up just typing it now. He keeps me going, as do you guys.
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Is anyone else getting TCH every three weeks and just H the two weeks in between? My MO swears that H alone has no SE's. The H alone weeks are not as bad GI-wise as the three drug weeks, but they are not nothing. He wants me to do the rest of the year with H alone (after the 6 cycles of TCH). It makes me crazy to think about that. Maybe I'll get used to it? Maybe the SE's will decrease? I'm at a loss.
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Jaycee49 - I'm getting TCH every three weeks for a total of 6 chemo sessions than will continue H every 3 weeks thereafter for 12 more rounds. A year total of meds.
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Hey,
I am getting the TCH all together with the Pejerta every three weeks. All 4 at once for 6 full doses and then I continue Herceptin until my 1 year anniversary of Dx.
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Day 3: The word for the day is "weak." I've been sleeping most of the day. I tried to get up a few times and do something only to feel dizzy and have to sit down. I've had a little GI problems. Immodium helps. No bone pain from the Nuelesta shot yesterday....hope it stays that way.
As for caffeine my doc did not prohibit it...only alcohol. Strangely enough I don't want soda which I used to have every day...hmmm.
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llizz, thanks for sharing the photos! You actually look very happy in both, I'll bet your hubby is there at chemo with you.
hope the tummy issues settle soon for you.Jaycee, get one of those sleep hats you find at a wig store, or just a beanie of some type to wear in the house and when you sleep. Will keep you warmer and more comfy. I have a couple I will resort to. Seeing this change has to be so, so hard. I am not looking forward to it at all!
Justamy, glad you don't hurt from the shot! Did they give it to you in your stomach? Rest up today. Glad to hear we can have coffee! Not even a little beer or wine?
I don't have that cocktail of TCH, glad several of you are doing the same one though, I think it will be nice to share with each other on how you do. Also if you compare SEs you will see someone doing something you are not that will maybe help you. I am very thankful for finding this blog!
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Jaycee. Hugs to you today. I thought it would be better once we started chemo, but in some ways now the real work starts. Today is one of those signposts on the road to getting through this.
For you other AC folks that started this week, I was expecting that the first two days would be great, and I would have so much energy. Not the case for me at all. Maybe I didn't get enough steroids?
Day one, feeling kinda shell shocked and tired. Not sick per SE, just like a bit of brain fog and not wanting to be very engaged with anything. We did get the car packed up to get the family and kids from San Francisco to Reno last night, and got here safely around midnight. It's nice to be back in a house with more than one bathroom now, and I can really recuperate and close the door to sleep.
Day two, feeling more tired, nausea starts to kick in, but I am taking Meds at the first inkling. Miralax is amazing, and I feel so much better. I got really deep naps in, wake up, wander downstairs, get a small snack or mini meal, refill my water bottle, and wander back upstairs (which is really difficult). One thing I am concerned about was my red devil dose. Most folks get between 40-60mg, I asked the nurse what I got and she said 100mg, and she even checked with the pharm since I'm pregnant. I wish the doc would have told me, not as if I would say no, but I do like to know why. I am not a child and like to know the reasoning behind it. It may be because I'm cycling every three weeks, or because they found that big node upon the second exam and are saying I'm between maybe a stage 2 or 3 now? I swear the tumor has gotten bigger in the past two weeks with the pregnancy, but as I lay on my stomach to sleep last night (I still can for a weeks weeks yet I hope), the tumor feels different. Less dense? Like it did a few weeks ago. Is that possible? Weird.
Scared that days 3,4,5 are going to be even worse. At least I have lots to watch on tv. Keep strong women. Report everything! I love to hear how others are feeling and any little tricks they may have for feeling better.
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Day 2 and still feeling pretty good. My mom just gave me my Neulasta shot because she's a nurse and the thought of giving it to myself makes me want to vomit.
Kellya I am Kelly Ann too. My nurse said the swelling should go be good after a few day so you should be fine.
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Jaycee , we do the same chemo drugs. My MO planned to do Herceptin weekly initially with TCH every 3 weeks for 6 rounds. My Echo turned out great pre chemo, so he changed the plan for Herceptin . Every 3 weeks now with the higher dose. I will do Herceptin again after surgery 3 weekly for a year. He said that Herceptin alone will be like a breeze compare to the TCH I'm having now.
Llizz, we started chemo on the same day 8/19, I do not have Perjeta on my list. My 4th day today is better than the 3rd yesterday. Nausea was bad on the 3rd, Biotene and lots of water helped. Had to have 2 Imodium this morning and feel better now. My head is really itchy, fatigue was at its worst yesterday. Has been sleepy around 3-5pm. I am hoping tomorrow will be better.
Hang on justamy, we could do this.
Hugs to you all ladies...
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I need to clarify my comment on caffeine. It's not a no no. It's just that caffeine is a diaretic and can cause dehydration. Having said that, if you are drinking water then drink coffee too. I just limit myself so I don't run into problems. I definitely stayed away first week of chemo because I had stomach issues. Sorry about not being clear before.
Just want to say to the ladies going into 2-4 days after treatment, you are awesome! We are kicking cancers butt, even though it may feel the opposite at this moment. This will pass and we will win this fight!
Wishing you minimal SEs....
Cathie
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Hi, everyone! Welcome to all who are joining this great group. Such a great source of encouragement for this journey.
I am glad to see that SEs are easing up for so many.
I survived infusion #2 yesterday. Still not having much in the way of side effects. Just a little tingling on my tongue, and now and then a sniffy nose. My onc says taxol/Herceptin will likely just be boring. Fatigue will increase and I will likely get achy.
It turns out that the steroids really agree with me. I sleep well, yet have a lot of energy. I will only get them for one more session, though, since I had no bad reaction to the infusions and don't need the steroids. Rats, they are they only good part.
I will lose at least half my hair starting in about 3 weeks, the onc says. So I am going to get my already-short hair down to about one inch, just to prepare. I couldn't get too excited about the standard cancer-related head coverings - don't know why, as lots of them are really pretty. Maybe because I sort of live in cargo pants and don't really ever have to dress up - I work from home - and the coverings largely seem dressy. So anyway I went to REI last Night and got a Buffs cap and two hats that I will wear even after my hair comes back. Am waffling on getting a wig but I guess it could be fun to have afterward too. Are you ladies with wigs finding them easy to get used to? Any tips?
Angela
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HeyEveryone!
I am reading all of your entries, I know I'm a little quiet. I just want to let everyone know that hearing your stories has really helped me understand that I am traveling a well worn path. And if you guys can make it through, there is hope
I saw a woman today at the pool. She had no hair, was wearing a hat and I could see she had a port scar on her shoulder. I desperately wanted to approach her, but didn't.
That is all.
Good night, Ladies
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I started losing my hair earlier this week and by Friday it was coming out in clumps and was all over the house...so gross! Had no choice but to buzz it off today. My daughter is incredibly stubborn and was determined to shave her head to show her support but she finally compromised and agreed to leave a little bit of hair in her head.
I attached a before and after photo. The before photo was taken on 8/7 at my first infusion and the after photo was today.
My crazy daughter had the biggest heart ever 💕💜💕
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You both look beautiful! I love your smiles!
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Wizard - you are both beautiful women! Love your pic, and love the way your daughter supports you.
I have been experimenting with my head gear this weekend. Wore my wig to dinner last night and a couple of hats over wknd. Comfortable! It is what it is....
Tabbygirl - Wow already did 2nd treatment. Glad it went well. I didn't realize that the steroids may not be used thru all the treatments, or maybe it is just the cocktail you are getting? Good question to ask MO about next time I see him. I get my 2nd on the 29th. Still feeling good and have been doing a lot of walking and stretching.
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Wizard50 - you and your daughter look beautiful! Rock on! ☺
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Wizard, two gorgeous ladies and such a sweet daughter to want to support you this way!
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wizard what a great picture and you do have an amazing, supportive daughter!
Catie, glad you are able to get your walks and stretching in. I may try to get one in today, may be way too got though. Going to only take one Norco so I can feel better.
Lliz, hang in there, quiet and lurking is fine, just let us know you are here with a smiley or sad face for the day. I saw a lady while we were in Florida last week who was going through chemo. She was getting off their boat and she was positioning her hat on her hairless head. She had a dozen raw oysters and a shock top beer. I didn't say anything either.
Those of you with ports, should I be off this Norco before chemo tomorrow?
Also, what would you suggest taking to chemo? Am taking iPad, lemon drops and a jug of ice water. Am thinking of bringing a Popsicle for when they push the red devil.
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ok so I heard the expression red devil several times now, but do not know what that is. Can anyone tell me?
kellya - you are in my thoughts for ur treatment tmrw. Would also recommend bring a snack or some food, maybe a light blanket, although they usually offer one there. The fluids going into IV are cooler then ur body temp, so u tend to feel cool.
LLizz - love ur wedding pic. Long hair or short, u look great.
Wishing everyone minimal SEs.
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Catie, I'm not sure what determines how they prescribe the steroids. I will ask for more detail, too, because now I'm curious. I assumed we all got cut back. Maybe it is because I am on just Taxol/Herceptin and I didn't have a bad reaction. I will miss feeling like Wonder Woman.
I also asked about any food or drink to avoid and was told no restrictions. Sushi was even OKed as long as I know the source and have eaten there without incident in the past! Again, maybe this is because I am on low-dose Taxol? I dunno. I can imagine that we might have different tolerances based on our cocktails.
I asked if an occasional glass of wine is OK, and was told yes, but to avoid alcohol the day before, the day of, and the day after infusion. In general, my onc supports daily wine for heart health. She rocks.
So I woke up this morning with some gastro activity, but nothing horrible. I guess I had this last week on Day 2 or so also. Not bad, but I had hoped to sleep in.
Before my dx I had come across a great new cookbook, "Brassicas," full of interesting and uncomplicated ways to prepare broccoli, kale, and all their many relatives. I planned to add a lot more brassicas to my diet. Since the dx I am trying to eat a brassica a day; my personal challenge. I am sure as my taste buds start to go, it will be a REAL challenge but it feels like I am Doing Something, for now.
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Catie, they refer to adriamycin as red devil. It is bright red in color and I'm guessing it got its name from both color and side effects. BTW, if anyone is getting adriamycin and has not yet had first infusion, be aware it will turn your urine red for a little while. Glad that a friend had given me a heads up on that so I didn't think I was having internal bleeding or something!
Kellya, I brought a blanket (though I ended up using theirs), a bottle each of water and Gatorade (my center offers water and juice only), my iPad, some saltine crackers (which I did eat), and some hard candies (which I did not eat). Oh, and let me not forget, my hubby came as well to keep me company. Good luck and will be thinking of you!
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yep, my hubby will be there for this first one too. Will drink lots of water today to be hydrated. I'm bringing animal crackers, love those! I will bring a G2 too, great idea! He can watch netflix on the iPad if I zonk out from the Benadryl. Heard if you drink plenty, it dilutes the red color. Also heard to flush twice the first two days wit seat down.
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Kellya: I took my laptop, because my center has Wifi and I watched Netflix
I brought my ipod (didn't use) and my knitting. I also needed to bring lunch. I was actually hungry during my first chemo, because it was rather uneventful and I was there from 9:30-3:30. I even ate pizza! Thanks for the tips on Biotene! im going to get some.WIzard50: I'm planning to clip my hair today! Probably the same length that your daughter cut hers. I keep having dreams of it falling out in public.
pangtidor: I want to stay in touch with you, since we have a very similar regimen and we started on the same day. I'd love to do some comparisons, just for my curiousity sake.
For me so far: I woke up in the middle of the night with a bad headache. No migraine, but pretty terrible. I took one pain med (hydrocodone 5-325) I finally went to bed again. Now I'm having all kind of muscular cramps. Nothing very very terrible, but a lot of those leg cramps and feet cramps. My tummy is having light cramping too. Not sure how I should address it, if its just one of those, "deal with it" things.
Wishing everyone a great day
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