Cytoxan Taxotere Chemo Ladies- February/March 2013

TeamKim

Thanks Mellie (and everyone) for the food suggestions. I am going to keep it light and push lots of fluids and hope for the best. The support and info you have all offered so freely has made me feel much calmer going into this -- but I still think I will enjoy an Adivan with that pre-chemo lunch! So glad I found my way to this thread. I feel very prepared, thanks to all of you!!!

ckmoss

Brown-I, also, have had the rapid heartbeat. It started after my 4th (last) chemo and went on for 3-4 days. I would do deep breathing exercises and it would go away for awhile. Aggravation.

In ref to 4 or 6 treatments. I had 2 lymphs positive and was given 4. My onc said that it had to do with how slow/fast growing the tumor was. I've also looked at other peoples dx and how many treatments (I was concerned I wasn't getting enough)..and really can't find a lot of rhyme and reason to it. I think every onc is different and that plays in to it. I know how much of a dose you are given is determined by your height/weight. My nurse said that is why they won't mix until you get there, as they would have to throw it away as that mix is for you specifically and, according to the "This is not a bill" statement I get from insurance..one treatment is over 100,000.00.

I took an ativan when I would get home from treatment as can not stand the jitters you get from steroids. They worked well. And, though I ate smaller meals..really didn't limit what I ate. I can tell you that even in between chemo..the chemo changed the taste of some food. Sausage and steak...absolutely foul. They don't taste anything like what they are suppose to. Not sure if its still like that,...but scared to try. Also, my mom made..for the first time..a homemade chicken pot pie for the day one of the chemos SE hit..and it was good then..but since, she has asked did I want it again and the thought turns my stomach..I associate it with chemo (I guess that's because its the only time I had that).

Have any of you gotten the bionic nose yet? Smells were incredibly strong to me. This is not always a good thing.

Well, we are getting ready to head to the beach this weekend. Honestly, still having hard time believing its over. I went for 6 mth mammogram on remaining breast yesterday and got HUGE unpleasant flashback ..as that was where all this hell started. I haven't been in there since diagnosis. She did the reg mammogram and then put me in the private waiting room while radiologist looked over. She said if he saw anything that needed to be looked at she would come get me for ultrasound..which is what happened before. I thought to myself ..if they find something in this one..after all I've been through the past 6 mths..Im going to jump off this bldg!!. All was good though. He even came out and congratulated me on getting through..so that was nice. I, also, had CT scan to make sure all the cancer is gone..won't know the answer to that until after I get back from the beach..which suits me..same bldg jump response if have to have more chemo..lol.

bondsy

I went in today to get my chest port fixed, and the surgeon was able to get the "kink" out of the catheter line easily. Hopefully this will work and I'll have no more problems with it! Time will tell.

I am on day 6 of my first chemo cycle and I feel pretty good today. I've had many of the food-related side effects that I've been reading about here, like one day loving a food and the next day not being able to eat it. Also, the smell of food cooking is not tolerable at all. The only thing I've consistently been able to eat is homemade vegetable soup, which fortunately is healthy and I can live on.

I feel so badly for those of you who have to try to work during chemo, and also for those who are dealing with the huge costs of medical bills. I'm a kindergarten teacher, so I'm off work for the entire time that I'm doing chemo because there are just too many germs in a K classroom, plus for me it's just too rigorous. I'm using sick leave until it runs out, then our teacher union gives out 40 days of catastrophic sick leave to members in need. If that runs out, then teachers can donate some of their sick leave to me which I hear several teachers have already done for me. As for the medical bills, I have Kaiser so my co-pay is fairly low (the Neupogen/Neulasta is $25 per cycle, the anti-nausea pills are $10 per every two cycles, chemo has no co-pay, doctor visits have $25 co-pay, etc.) It's nice to know exactly how much I'm responsible for and I can plan for it. Now that I look back on it, becoming a teacher was one of the best decisions I have made in my life because even though it's not the best paying job, the benefits now are really paying off. But again, I feel for all of you who don't have such a fortunate situation, and am praying for things to get easier for you.

Nocompromises2013

just checking in ladies to say Disneyland Paris has been great - although will be very happy to leave ....4 days is PLENTY !!!!

25 days post final chemo We 'did' paris in 16hrs = arc de T, Notre dame, trocadero, versailles for 5 hrs ( including both Trianons, queens village, and the chateaux ( had the push bikes for 3 hrs). Met up with friends for a meal and went up Eiffel Tower at 10pm Got home past midnight - admittedly some attractions were very brief photo opportunities but I outlasted my 2 teenage companions at Versailles !!!

Needless to say I virtually crawled into my hotel room after sooooo much walking - 2 days later not sure my heels and calf muscles have recovered yet !!!

We return to London today and were supposed to do 2 days of sightseeing for DD. Seriously not sure I can face that at present !!

Bondsy - good to hear you travelled ok for chemo 1 .... Chicken soup was my lifesaver days 4/5. Stay strong

ckmoss

Nocomp-WOW! You have really been going!!...I can tell you when we go to Disney World..Epcot about kills us. I take huge bottle of motrin and walk for 6 months before getting in shape and it still is a lot! How you can do after chemo is beyond me..but GREAT that you can! How nice you could go from this hell to "The Happiest Place on Earth".

Bondsy-It seems I had more issues with food after 1st chemo than any other. I remember going to see my friend in phsical rehab and they were pushing around the hospital cart of food..I thought I would throw up right there...not a good smell anyway...ugghhh! Something, if you like, you could try..Progresso makes a wonderful lentil soup..its very important to get fluid and protein now..their soup is wonderful (didn't look that good..not a big bean lover). Anyway, an idea. I, also, lived on scrambled eggs and grits...not sure what part of the country you are in..but oatmeal is good too...Back in my college days..many eons ago...that was my hangover breakfast..and after my 1st chemo when my stomach was iffy..I craved it..Guess flashback!

I'm glad you port is working..I think you will end up being glad as well.

bondsy

Nocompromise & ckmoss - I do love soup - it definitely never loses it's appeal, especially plain fresh vegetable soup which I've been making bundles of and freezing. I add chicken or pasta to it when I take it from the freezer, whatever I have on hand. I'll try the Progresso lentil soup. Oatmeal was one of my go-to comfort foods last week, but this week I can't eat it!

KBeee

Team Kim- I hope your side effects are minimal and manageable

NC- It sounds like a fabulous trip! I hope you can enjoy a little of London. We were there this summer for 2 weeks, and loved it. Hopefully you can do some non-walking things like the London Eye; we did that and a boat trip as part of a package, and it was one of our favorite parts of the trip.

ckmoss- Enjoy the beach! I am so glad that your mammo was all clear. I just got a letter in the mail today from the radiology place telling me it was time for my yearly mammo (mine last fall was completely clear). Obviously it was just a form letter, but you think they would cross reference things. I did put it in our burn pit instead of the recycling bin.

As for me, my event went fabulous yesterday. I am thrilled, albeit tired from a few long days at work. My next project I can do from home, and I am grateful to have things to do while not on full duty. Along those lines, my BS and PS have both cleared me to return to full duty, but I have restricted myself to just ambulance on call shifts and only on days where there are openings and I happen to be feeling good. I love that they give me the flexibility to do that. I love, love, love my job, and co-workers, and am so thankful they are so flexible with me. Back to chemo bar for round 2 tomorrow.

Nocompromises2013

good luck for tmrw KBEE - hope u do as well as last time - so glad your work is so flexible makes life so much easier and good on you for burning the form letter - I received a letter from life insurance people actually stating that 1in8 are diagnosed with BC and did I have income protection etc etc I got it when I came back off holidays in June and it was actually dated the day of my Dx. I was soooo mad !!!

Ck - great news re yr mammo ( do we trust them now???)

Re disney - maybe I should have taken the Motrin first - going to try for Big Ben , buck house, London eye and tower bridge then off to theatre for Matilda- girls can go shopping on final day. can't believe it is back to AUS on Sunday . Least I will be going into summer

Xx

TeamKim

I am feeling generally well after tx #1 this afternoon. The only thing bugging me is double vision at a distance -- watching TV each character has a shadow ghost. Any of you have this problem? Doesn't matter if I wear my glasses or not. Has anyone had this?

indenial

TeamKim, did you take Compazine at all (for nausea)? I had some vision issues -- sort of double/blurred or strained I guess -- and it was caused by Compazine, apparently it's a known side effect of that med.

TeamKim

No Compazine, but they did put some nausea meds in my preMeds bag before they hung the Taxotere. Aloxi & Decacron were in that PreMed bag. It probably was one of those, since it seems improved this morning, though not gone completely.

ForMyGranddaughter

Today I had my last treatment!!!!

TeamKim

formygran-- CONGRATS!!!!! Do the happy dance! Are you DONE done, or is there a rads chapter yet to go? I know you had mX, but sometimes they do rads anyway....

KBeee

FMG: Congratulations; so happy for you that your last infusion is done. I hope you have minimal side effects and that full recovery comes soon.

TeamKim: I am glad that you are feeling well. I have not had the vision issues. One thing I would suggest is to keep a journal and write down the date, and then all side effects experienced. It was helpful to have that today at the MO, and it also is helpful this time to see what happened last time...kind of like pregnancy...you forget some things pretty quickly. So far, this one seems to be treating me like the last one, with manageable side effects thus far. We'll see what next week holds!!!!

JeriGrace

Hi all. I've spent the weekend trying to recover from my first week back at work. Don't know what I was thinking - definitely should have started with a 3 or 4 day week. I was so exhausted by Friday that I could barely put one foot in front of the other! I am off tomorrow for appointments with my MO and RO, then working the rest of the week. It felt so good to be teaching again, I just wish it wasn't so physically demanding. I'll be starting rads soon and who knows how that will go. But with surgery and chemo done, I'm seeing that little flicker at the end of the tunnel.

Thinking of all of you as you work your way through your chemo treatments. It's a journey - each step gets you closer to your goal. Walk on!

bikergirl

Yeah!!! Formy!!!

bikergirl

JeriGrace-

Are you doing rads next?

JeriGrace

bikergirl, just got back from my simulation. I'm starting 10/29. My RO said I could start next week but I decided to push it back a week. This way I can make my medical leave last through December. I'm having 30 treatments. The radiation therapists were great but I know I'll be nervous about this until I get started.

bondsy

JeriGrace - How long after your last chemo did you wait before going back to work? My last chemo is scheduled for Dec. 6th and I'm planning to go back to work January 6th. I'm also a teacher (kindergarten) and just wondering if one month is enough time to recover. I'll also have to start radiation some time in January, but plan to try to work through the radiation. Do you think this is a realistic timeline? Thanks.

TeamKim

Day 5 after 1st chemo, and I seem to be back to the land of the living. Going back to work tomorrow (I am a teacher too, Bondsy, but college students are not quite as physically demanding as Kinders!). My head is itching like crazy -- does this mean the hair will be falling out sooner than 2 weeks? Anything I can do about the itching?

bondsy

TeamKim - good luck back at work tomorrow. I'm at Day 11 after 1st chemo, and feeling almost totally normal at this point, past the food issues and stomach pains, etc. The only SE right now is dry mouth and dry eyes. A few days ago my 24 year old daughter and I went to our hair salon together. I got my hair cut fairly short in anticipation of it falling out soon. My daughter, on the other hand, decided to have her long, gorgeous hair totally shaved off, and donated it to Locks of Love where they will make a wig out of it for a child with cancer. She did it out of love and empathy for me, and I couldn't be prouder of my brave amazing daughter.

Mellie289

Bondsy - that is so wonderful, what your daughter did!

TeamKim - interesting that day 5 is better for you. That's usually my worst day!

Today is steroid and blood draw day in preparation for infusion #5 tomorrow. I'm so apprehensive now that the SEs are starting to get cumulative, especially the peripheral neuropathy.

I have a workshop next week for work (days 6 to 8) and my BF thinks I'm stubborn for planning on going. I'm always feeling better and a bit restless by then and I've mostly taken day 6 and 7 off work so far. I figure it will be a lot of sitting around though and I hope I can manage. I'm hoping to find someone to carpool with on day 6 at least since it will be about half an hour drive. Day 7, I will meet with the radiation oncologists first thing in the morning to review our plan because I need to get some idea of timing since it could begin week of or after Thanksgiving and end before or after Christmas/New Years and I need to plan some holiday time. I can't keep going on without being able to plan to see all my family up in Canada. I feel like I'm being held hostage in California by my treatment. I'll have to drive myself to the workshop that day for sure, so I hope I'm up for it.

Is it crazy to think I can do this?

TeamKim

day 6 -- made it through my day at work, though my office is in an historic building with no elevator and climbing the stairs all day has been a struggle. Once people see me and see that I don't look like I am at death's door, they seem to expect business as usual. Guess I don't blame them -- I don't look sick.

Worst problems at this point are

1) joint aches -- and I didn't have Neulasta! -- but Motrin helps that, and I double checked with the MO that Motrin is OK for me. Said my platelets are high enough so it is OK.

2) Yeast infection or something giving me lots of itchiness in the "nether region." Onc nurse had me go to my PC dr and get a urine test yesterday to rule out UTI -- it was negative, but couldn't see the dr for exam because he was booked solid through Wed. So onc nurse said get some Vagisil cream -- it gives me a little relief for a short time, but isn't knocking it out. She said it might be itchiness from the hair follicles down under, getting ready to lose that hair. I haven't had a yeast infection in 25 years, but that is sure what this feels like, minus the discharge. Any of you have that issue?

3) Hair on my head itches too, but not too bad. How long did yours itch/hurt before it started falling out? I am wondering if I need to alert my stylist that I may need that buzz sooner than I thought.....

Jtrosesav

I really need to join this forum and learn from those who have taken this journey before me so I hope you'll have me. I started "preventative" chemo Friday so today is Day 5. I didn't think I'd feel this badly. I'm on TC X 4. I hated the effect of the steroids I got pre-chemo! I've been nauseous , indigestion, constipated, diarrhea, cold, weak and depleted. Today was the first day I could stand long enough to shower and that I drove my car, though not up to long distances yet. Now my mouth and lips are feeling very dry. Can ya'll help? This has been bad enough, I don't want to get mouth sores, too!

indenial

TeamKim, my head itched for about a week to 10 days before the fallout started (and once it started I did still have a few days before it came out en masse!)

Jacquie, the best advice I can give is to drink A TON of water, starting 1-2 days before chemo & right through that first week. I never got the mouth sores some mention but I did have a sore mouth/throat, if that makes sense (like, no actual sores, just sore!) Mine seemed to be aggravated by acid reflux so lots of TUMS and Pepcid helped. Also slippery elm lozenges. Did you get pre-meds with your chemo? You should have gotten several different things (I got Pepcid, Aloxi, Benadryl, plus the steroids... and I took a stool softener starting with the first dose of steroids). Are you taking your nausea meds? If your side effects are not well-managed, talk to your onc. Don't suffer needlessly! Your onc can adjust your meds or suggest OTC meds or give you IV hydration which can also help with some of this stuff. No suggestions on how to deal with the steroids though, I also hated how they made me feel!

ckmoss

Hi Guys! Back from the beach and ohhh so tired..but happy tired! I'm 16 days out from last chemo and, although, had some fatigue at the beach when counts went low..was ok..as I was doing nothing but lying on the beach all day! I was right..way better to suffer there than here! Kidding aside..was really great to just get away for 5 days and de-stress. I got my prosthetic a couple of days before we left, so that was great not dealing with the poof. However, one hour after we got back home, as up at hospital getting blood drawn and have AM appt with onc in the morning..back to reality!../ I had my CT scan before I left and he did major labs this time...so I'll know tomorrow if I've licked this thing or more chemo rounds.

FMG-Congrats!! Yeaaaaa! I know you are sooo happy...! You did it!!!!

Bondsy=My last chemo was the end of Sept and I had my onc extend my disability until Oct 25th to make sure I was through with side effects. Through all this, it seems I get over it and then right before next chemo, my counts drop and I can barely function. Plus, I thought would be time to gather strength back. Its weird how each treatment has been different. My 3rd was the worst of all. In the three weeks between, I only had 2 days that I felt good enough to drive..but after the 4th one..I was over main side effects in 6 days. I would give yourself time to make sure. I think a month is good.

Teamkim=Maybe buy the Monastat? When they had me on 2000mg antibiotic for seroma from MX..I started eating yogurt like crazy..twice a day with fruit..because my body does not like antibiotics..and with that high dosage..I never got one..I now have yogurt every single day...By they way..not sure if this would work..but my friend swears that if you apply greek yogurt directly down there instead of eating it solves her..couldn't hurt to try and the cold would probably feel good..lol. Hope that hell is over soon for you!

Jacquie=You and I are exactly alike in ref to steroids. I hated the first 2 days even worse than the chemo. My onc prescribed me ativan and that helped loads! The first two days I would take one every 6 hours and that lessened most of the steroid SE. I also lived on Prilosec, starting 2 days before and about a week after. I didn't drive a lot as steroids and chemo made my head feel zoned. My 2-4 chemo..when chemo hit I had hard time having a conversation. Indenial has excellent advice in prev post.

Well, I hope everyone is doing good and having easy SE.

TeamKim

Jacquie --

Only thing I can add to this excellent advice is Popsicles and icy drinks during the infusion. Start getting your mouth good and cold with these during the steroid/preMeds infusion, so that when the T and C go in your mouth is already cold. I just brought a cooler along with a six-pack of Popsicles inside, and had a lemon/ginger iced tea slushy too. And drink a LOT, pretty much constantly -- helps with many things. Hope it all goes more easily the second time through! (((Hugs)))

--Kim

JeriGrace

bondsy, I think your dates sound good. I had to return at 14 days post final chemo because my sub didn't want to do report cards and parent conferences. I needed at least another week and 2 would have been better because the fatigue had really accumulated. So now I will be worn out going into radiation. A kindergarten teacher at my school went through radiation. She had to start taking half days off after a couple of weeks because of the fatigue, so you might want to be prepared just in case.

KBeee

Chiming in on the yeast infection. I had one first round. I ate yogurt at breakfast, lunch, dinner, and had frozen yogurt for dessert. It went away in a couple days. With my sore throat, it is one of the few foods I can tolerate, so I have been eating several containers per day since then and have been ok.

I am on day 5 of round 2. So far, this has been almost a duplicate of round 1. Sunday night I felt flu-like for a few hours, other than that, just fatigue, sore throat, and bone/ muscle aches...abdominal pain, back pain, leg pain. Ibuprofen pretty much takes care of it when needed, but until it does...yikes...it feels like I am in labor. I have a temp of 99 tonight. Last round I had the same pain, same places, and had the same temp. I think that my body is just fighting these poisons! Hoping tomorrow brings more energy and less pain.

Mellie, please post how things go in rounds 5 and 6 compared to your previous rounds. I am also scheduled to do 6 rounds, whereas it seems pretty much everyone has 4. I am very concerned about over treating since I have zero node involvement. I am concerned about cumulative effects. I plan to bring this up at my next appointment, which is not until round 3. I want some information on risk/benefit of 4 rounds versus 6. If I continue to have manageable effects, I am ok with 6, but it seems rounds 3 and beyond are so much harder for everyone, so I would love any info you can share aout how things are going for you.

TeamKim

KBeee & CK -- thanks for the tips on the yeasties -- I love frozen yogurt, so will add that and regular yogurt to my diet and see if I can kick this. (Not sure I want to slather on the yogurt, CK, but maybe I will get desperate enough -- haha) I think I will put in a call to my GYN too and see if he will weigh in on this (he is a cancer survivor, and has been super supportive). Many years ago, when I used to get yeast infections in my 20's, my GYN at the time gave me a sample of some cream that was magical. The OTC Vagisil is just not really cutting it. I'll let you all know what I find out -- I know I'm not the only one struggling with this. Great to have this board to get some advice!