Chemo in July 2015

Bliss58

@Suzanne1971, I agree that I'm happy to be doing neo-adjuvant because it gives me more time to think about everything else to come! Also, I have positive lymph nodes, so my team thought it best to attack with chemo throughout my body first rather than waiting for me to heal from surgery. My 3rd treatment went well Thursday, I'm feeling pretty good, and hope you are, too! I'm having itchy skin, but I think I just need to take better care of it; pretty dry. I usually have to take Zofran by Friday evening, but this time I haven't taken anything so far. I do feel mouth changes, so I'm rinsing and expect food will start changing taste today.

I'm working a combination of telecommuting from home a few days following treatment and working in the office for a week and a half or so. I'm lucky that my workplace is very flexible and that my work is mostly computer, so it's easy to be at home, but still in touch at work. I'm looking forward to going to a baseball game tomorrow with my coworkers, their families and mine. Also, now have a planned, and looking forward to, a long weekend break in October with the in-laws during my daughter's fall school break that coincides with my last chemo round. Time to celebrate that!

Hope everyone who've just had treatment are doing well with few SEs. Hugs to you all and happy weekend!

Bliss58

@Melinda531, yes it looks like we and @Suzanne1971 are pretty much doing the same regimen and on the same schedule. I am celebrating 3 down, 3 to go! But of course, then it's 6 more rounds of H for me and I expect for you, too? Sorry to hear you've had such trouble with the Taxotere. My counts have been good, but this time I was potassium depleted, so I had to stay an extra 2 hours for that infusion! So much for the lesser infusion time they keep telling me about, but hasn't happened yet! ha. Wishing you a good weekend.

Suzanne1971

@bjsmilller itchy skin!? I don't have that one. Generally my side effects have been manageable. But today was my crash day, and it wasn't as bad as round 2, so I'm hopeful at was a fluke.

I do find it hard to drink a lot of fluids (and normally, hydration is no trouble for me)- but I put ice in my water yesterday and holy moly, I can drink it! I'm a room temp water drinker normally 😜

I'm in Rhode Island, and we have something called TDI here- temporary disability. I am eligible to receive it, and will use it when I'm out for surgery. It's nice to know it's there when I need it.

Speaking of surgery- for those that had bilateral with TE, how long was your recovery? And by recovery, I mean feeling like you could resume most normal activities. I know many of you went into chemo after surgery, so I'm sure that's impacted your timelines

RuthElizabeth

hi everyone. I had a double mastectomy. The first week was awful. Couldn't use my arms much at all. Once you get the drains out, things go fast. I think it was a breeze towards the chemo. I only took pain meds the day I came home from the hospital. After that day, nothing. I hope you have the same luck...

Have a good night. Ruth

Jbandkb1

Ruth I will be having a double mastectomy after chemo is finished. I have 2 small kids. By the time of my surgery my kids will be 3 1/2 years and 16 months. Do you think someone with kids is going to have a extra hard time with recovery I know you said the first week seemed to be the hardest.

RuthElizabeth

jbandkb1, yes,you will definitely need some help. You won't be able to sleep in bed for at least two weeks. I slept on a lazy boy for three weeks. I'm a side sleeper, so it was so hard to actually sleep. Once I finally decided to try to lay on the couch to sleep, I positioned my chest between the couch cushions, and slept on my left side, with a pillow propping up my right arm. They make a pillow buddy, but I just used a couch pillow to prop up my right side, arm. I had my tumor in the right breast, but chose to remove both. My left side wasn't as sore as the right. You won't be able to lift the kids for at least three weeks. I cried and was embarrassed for the first week, I couldn't wipe my butt. My son was here to help for five days. Bless his heart, he did it for me. I was so embarrassed. But, he was good about it. You have to take a sponge bath the first week, till the drains are out. I got baby wipes and used them to clean myself. Also a back sponge to help to wash. Again, your first week, you are totally reliable on someone else. I also bought stretch capris so wear. Easy to get them on. And larger than your size button tops. You can't life up your arms to dress. So, my neighbor actually went to goodwill And got me some extra large tops to wear. They were ugly, haha, but worked. You can use your hands, just have to keep your elbows at your side the first week. If I can think of anything else, I will let you know.... Good luck to you. Ruth

Bliss58

@suzanne1971, the itchiness seemed to be deeper inside my skin and not on the surface, but today I don't feel it. My SEs have been pretty manageable, too. The Saturday after treatment is always my worst day. Last night I was wondering if I would make the ball game today, but this morning I feel much better, so off we go for some fun. That's great that RI provides temp disability; take advantage of that!

MissBee123

Hey all,

6 days out from my second infusion. Much better this time around, no rash. Still have the fatigue and, sadly, nausea. The weird thing with the nausea is I can barely stand to look at or think about food, but if I make myself eat I feel so much better.

I get my pre-med steroids and have dexamethasone to take during the week, but the nausea still creeps in like I am constantly sea sick. I am over all things ginger, though! Same goes for lemon. Crackers and bread do help but they're hard to swallow.

Has anyone had success with any other types of nausea alleviation?

Janaples

I started chemo on July 7 and am receiving Herceptin and Taxol every week for 12. I just finished week 7 and the side effects are dragging me down. Not only the severe constipation but running bloody nose constantly and now my hands are swollen, red and itchy. Driving me crazy. My oncologist suggested I take a break from the Taxol for a week but I want this to be over with and don't know what to do. Has anyone taken a "break" and had it relieve some side effects?

Twnkltoz

the absolute best thing for me for nausea is the Relief Band. Get the one with replaceable batteries. Half the time I don't need any meds when I have it on.

Twnkltoz

and ugh.... Not looking forward to recovering from my double mastectomy after chemo, especially after reading that. :-\

Suzanne1971

missbee- have you talked to your MO? They prescribed compazine for my nausea. I don't have to take it often, but when I do, it works.

As for foods- what about something softer like oatmeal?

Ironically, I spent the day yesterday watching the food network, drooling over all that food. But the actual thought of eating it made me nauseous. I ended up eating cereal

Mom2ABoy

Hello July ladies!

Visiting from the August chemo group to ask a question. I just started chemo this past Friday. The last week of September I've got plans to be out of town at a workshop, and my accommodations will probably involve camping. This was all set up before I knew I'd have chemotherapy, so now that I've had one treatment, I'm wondering what I'll feel like by then. It will be six weeks into, or about half way through, my treatment. I get treatments weekly, so it's not like there will be a break before the workshop. Probably go directly from the treatment to the workshop actually. How are you all feeling at this stage? If you had a weekend away planned soon, would you be able to do it, or no? I don't think there's a lot of demand involved with the workshop, but I'm nervous that I won't even be up to going to it.

Batesburg

Hello Mom2ABoy,

I am doing weekly treatments, also, and from what I can tell from reading posts here and after having completed my 7th week, I think everyone is different and there is probably no way to predict how you might feel halfway through your treatment. One nurse told me that how you respond in the first few treatments is a good way to gauge how you will do throughout- but, I am not sure that is definitely a "truth"....because one might have a reaction/side effect early on and then get it under control or vice versa.

I do believe some of this is mind over matter for me, anyways. I am finding myself feeling a bit more tired as it seems the chemo accumulates over time. Plus, I am having some side effects from bone marrow suppression and am currently dealing with a low hemoglobin- but, that is easily "fixed" through a transfusion (going to get blood from my daughter if it drops further!!).

So, all this to say, maybe see how you do with the first several and then decide. What chemo are you getting? Maybe others who have had your specific chemo can chime in, but, then again, everyone is different. My MO said I was doing "quite well" with the chemo, and, my thought was immediately, oh, I feel badly for others you don't do "quite well", because I think I am doing JUST OK- rest a lot, feel a tad "punky"......

Not sure if this helped you one bit!

Mamiya

Mom2aboy, If I followed that correctly, you said in the other thread: "I'm getting weekly low dose Carboplatin and Paclitaxol, along with Herceptin, for 12 weeks, followed by Herceptin for another year and Interferon B for a year or more."

That might get some better answers from people who are doing a similar cocktail. I am having taxol and carboplatin now, but not a "low dose" so my own experiences may not help, plus everyone is different yada yada. I have had 5 taxol and two carbo so far. I would totally go camping. And then I would regret that decision, I think! I mentally feel able to do absolutely anything but I have a reality of about 50% stamina and endurance. I am having issues with being in any kind of sunlight, even with heavy applications of sunscreen - I feel like I am melting. I would also be a tad worried about hygiene and cleanliness (my neutrophils were 770 today: no chemo for me, skipping a week, gotta have a super clean and germ free environment). So, fwiw.

Suzanne1971

@mom - I'll echo what the others have said. I think this will be your experience to figure out, as we all seem to be responding differently (even those of us that are on the same treatment). I go every 3 weeks, so by the last week, I feel relatively normal. And overall, my side effects have been manageable with OTC meds.

Even if I felt great, I would be concerned about camping, from a cleanliness and bathroom standpoint. And my sleep has been super disrupted, so the idea of a sleeping bag and tent doesn't appeal to me 😊

Good luck and keep us posted

RuthElizabeth

Mom2Aboy, I get my last chemo Monday August 31, AC. Each chemo has been different. This last one I was down day 3 thru 5. We are going camping over Labor Day weekend. That Friday could be a down day for me. If you are camping in a camper or cabin where there is a bathroom, only you are using, you might be fine. If you have to share a bathhouse, please be prepared to take alone wipes before sitting, and water shoes for in the shower, and wipes for anything you have to touch. I agree with everyone else, each chemo is different. Keep a journal of how you feel, then you can go back and check your good day and bad. Good luck. If your close to home, travel back and forth if it's a bad day....

I went to my lymphedema therapist yesterday. Cried all the way home. I was really looking forward to starting to work after last chemo. Trying to get some normalcy back. Right ! I start therapy, maybe in two weeks. My arm is 3 cm larger than good one. I have to do therapy 5 days a week, and before leaving, get it wrapped till next day. They wrap it from my fingernails to my shoulder. Once the swelling goes down, 2 to 4 weeks, then they measure me for a sleeve. So, this puts me back 4 plus weeks to work. And that's hoping I can work with the sleeve. I guess I can't complain. It could be worse. But, I'm getting antsy. Crying a lot, emotions all over the place. But, at least while I am doing the therapy, I won't be sick. Guess that's a good thing. Do any of you have swelling issues? How are you handling it?

Just came off constipation, now diahrea and that da.. Hemmerroid. Ouch!!!! Still struggling with vision fog too.

Have a great day everyone. Hope you are all hanging in there. Love and peace today and everyday. Ruth

Artista928

Does anyone here have a port in their arm instead of on the chest? Just found out my cousin had it in her arm for chemo. Sounds better than chest because it would feel more like an IV. ?

Mom2ABoy

@notdoneyet (love that name!), thank you, yes, that's my regimen. Weekly taxol, carboplatin, herceptin for the next 11 weeks. I hadn't thought about the cleanliness aspects of camping and outhouse-type facilities! Maybe I'll email the workshop organizers and see if they can tell me more about what the facilities are like. There are probably options to stay in nearby motels, etc., but camping is offered for free, so that's why originally that was my plan. It wouldn't be worth saving the money if it made me sick, though. I don't know yet how my CBC's will turn out, I get my first post-infusion blood test tomorrow. Thank you all for responding and Strength to you all!

mdoc524

Hello Everyone - been a little while - where do I begin 👎😔

Last Thursday (7 days post 2nd AC) I woke up with severe diarrhea.. Went in for Nadir Check with nurse - almost passed out BP dropped during check to 80 over 50!! Bloodwork came back NO White Bloods & NO Neutrophils with low platelets! I did not at the time have a fever so same as 1st time - gave me IV fluids & sent me home to take 5 Day Anti-Biotic! The diarrhea got worse once home and then BAM fever started - of course - had to go back to hospital & sit in The GERM infested ER for 5 hours even though my MO when on the phone said I would be admitted and she would call ahead. Needless to say I was admitted and was there until late Sunday. White Counts only a 1 and neutrophils a 0.5 - stomach still horrible - lost 10 lbs in 5 days! I have to say the care I received was Outstanding as I was at the lowest I have ever felt in my life! I would have thought I would feel better but still so wiped out & stomach iffy with terrible headaches. I go tomorrow for blood work & then follow up with MO Thursday! 3rd AC is supposed to be Friday - MO may delay & will definitely reduce the dose! Melinda531 - I think you can relate - I hope no one else here experiences anything like this! Neutropenic with fever = Days in Hospital = Not Fun!

JbandKb1 & Suzanne1971 - I had BMX with TE on May 28th - will post all I learned shortly for you

Janaples - Welcome - sorry you have to be here but glad you found us!

My twins are turning 9 on Thursday - hoping to be well enough to do something fun for them! 🎂🎈🎁

Hoping everyone is doing OK!

Mary

melinda531

Mdoc524 - Yes, I can certainly relate to the various issues you're having! My doc definitely seems in tune with "standards" in terms of adjusting my dosage for the various things I've had so I hope that yours is as well and it keeps you out of the hospital and with better SE management I also wish you a wonderful b-day celebration with your twins!!!! One of the hardest parts of this whole mess is trying to keep life as normal as possible for your kids so I can imagine how important it is to you to have a special day with your kids.

Today was day 5 after my last TCH treatment and has been "the day" my stomach issues historically show up......but today was uneventful!!! They lowered the taxotere slightly this time due to liver counts and while I hoped that would minimize SEs, I'm finding myself suspicious of no stomach issues....LOL! How crazy is that? It's like I can't believe I won't have at least one day of horrible stomach pain or diarrhea!!! Keeping my fingers crossed that tomorrow goes the same way but in the meantime, I'm sitting here anxiety-ridden just waiting for the other shoe to drop!

Hoping all you ladies are managing well this week!

Jbandkb1

Mdoc524 I'm so sorry you had a rough time with the last round. I know it's a big concern for me to hope I can stay healthy & out of the hospital. So hard tho when you have no control on staying healthy. Especially hard to keep normal when you have kids. My daughters first birthday fell on a off week which made me happy. I guess for now this is our normal, & so glad it's only temporary. Hopefully you will not feel as bad for your next round. Prayers all around. Thanks in advance for whatever info you can share on your BMX. Not looking forward to it with small kids.

Twnkltoz

mdoc, so sorry you're having a tough time. Sending you positive thoughts!

Chemo #4 tomorrow. My tumor has shrunk a ton, which is very exciting. Looking forward to feeling it shrink some more with this round. Halfway done, and I'm thinking about surgery and trying to figure out how to prepare. Feeling a little scared. Thankfully, I have a supportive BF and no little kids.

Jbandkb1

Twnkltoz glad your approaching your halfway mark. It must feel great to be almost done with chemo at least. I can't wait to get closer to chemo being over. 5 more rounds for me.had round 3 today. I hear you on preparing for your surgery. I will too have a BMX. However, I do have small kids so that will make recovery that much more fun. I'm glad you have a great support team that's huge.

Twnkltoz

i am incredibly lucky!

MissBee123

Mary so glad you're home again after such an awful ordeal. Hoping the birthday party goes well this week!

Trying to find some comfort as I lay here panting on the couch, running to the bathroom every 3 minutes. All last week I had nothing but constipation, wishing I could find some relief. I stuck it out, though, without meds because I still felt it was better than raging diarrhea. Well...here I am on day 10 round 2 TCHP and at 4:15 a.m. my bowels have decided they are quite finished with constipation, thankyouverymuch. Raging diarrhea it is! Yesterday was my first normal day and I had thought I would be back to myself from here forward. Not so much; I don't know if I can even leave the house at this point! Imodium don't fail me now!

...has anyone else noticed that cancer sucks? Remind me not to get this again.

melinda531

MissBee123 - I love your humor! Well needed at this crazy time Have you talked to your doc about something stronger than Immodium? My doctor prescribed Lomotil with my last round as I had the same issue with not being able to leave the house that you're currently experiencing. Keeping my fingers crossed that I don't head down the path you're describing.....mine usually shows up on day 5 and since it hasn't I'm paranoid that it's going to come later when I'm back at work!!!! Here's hoping your stomach starts to cooperate!!!

Arista928- my port is in m arm. My surgeon puts it there instead of the chest to avoid where you may have surgery. Mine's at the top of my arm toward the inside.......thought it would be bothersome but I really don't notice it most of the time.

Suzanne1971

Melinda- I am going through the same thing! Day 5-8 after treatment is usually my worst GI stuff. This round has been pretty "quiet." You'd think we'd love SE free days, right? Not stress about them!

BUT, I did wake up with a jog to the bathroom, so I guess my GI was just taking it's sweet time this round (today is day 7)

Mary- hope you recoup and are up for a great birthday with your twins!

It's really difficult to watch cancer get in the way of our lives. I keep telling myself that it's only 1 year- and I'm half way trough chemo, so I won't feel like *this* forever. 2016 will be MY year

Stay strong ladies!

Mamiya

mdoc524,

Yikes! I thought I was having a sad faced week because I had to push back (one week break) treatment due to neutropenia: but nothing like what happened to you. Ugh, I hope you are feeling better.

Peabrain

My oncologist went all out this week, breaking out this slick little open front paper number in the now ubiquitous pink.

May you all live long and prosper!

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