Starting Chemo January 2015

spookisgirl · March 2015

HI all,

I seem to be doing better, nausea is down to minimal and I had energy last night, which I didn't get during the last round.I am so sorry to hear about all the SEs everyone else is experiencing! I am also concerned about the switch to taxol, especially how it will affect my ability to dance--if I have to avoid walking--yikes!

Sweethope--I am also beating myself up about gaining weight through treatment. I have gained 25 lbs since my Dx back in November and I hope it will be the limit to what I gain. I have diet plans, but keep getting sidelined by nausea and intense food cravings. Last week it was mushrooms and goat cheese (again--same as round #1!). I am hoping to get back to my plans next week as finally it seems I have satisfied the cravings.

I am having a harder time drinking water this round, had to add lemon juice (and a lot of it) so it tastes right.

Jenn

Brandi999 · March 2015

Jenn, if it helps, my hand and foot syndrome happened during A/C. It's just that the blisters happened to surface during the Taxol but by then they were already healed and not painful at all. My toes do seem to be taking on a grayish purple hue lately, which is odd but they don't feel different so I'm hopeful that nothing else happens besides my feet being my favorite color.

Beachbum1023 · March 2015

Hi Sweet Hope, when I was working during AC/T, my co-workers used to take pictures of everything I ate while working ten hour shifts! I ate non-stop. They would add funny comments to the pics, and it was pretty funny when I looked at them at the end of the day. But after all the treatment, the weight gain does makes me crazy. But I guess we will just have to laugh it off.

jlstacey · March 2015

I just can't imagine eating that much beach bum! I can barely get anything down

Beachbum1023 · March 2015

Hi jlstacey, I know right. It was weird, after the 5th day after chemo I would eat non stop. Mostly the same things over and over but pasta and fruit, and veggies. I did feel much better when the Taxol started. After just finishing rads, it boggles my chemo brain how much has happened in 10 months. I counted all of my appointments, and I am at 146 right now. Unbelievable. I guess my cancer killing butt kicking boots have served me well! Feel better, have you finished AC?

JazzerciseGirl · March 2015

January Girlfriends,

I've heard nothing about my Echo results. No surprise, as my MO and PCP are out of town until Monday. Just more waiting. I am less short of breath and my heart rate has decreased some, so maybe all be well with the heart. I remain optimistic. Beachbum: Fantastic news that your EF is stable and they are checking you regularly

Had a long talk (45 minutes) with my surgeon yesterday. The bottom line is that she now feels the benefits of mastectomy out weigh the burdens based on my desire to avoid radiation. (I am fearful of radiation because: A. Breast radiation will have to be very close to my heart because my tumor was on left breast and directly against the chest wall. That margin wasn't clear on lumpectomy; second lumpectomy required removal of some of the fascia, which was clear of cancer. And, B. Five years ago, my mother had the exact same BC as mine at age 80. She had lumpectomy followed by radiation and a month after rads finished had liver failure, turned jaundiced and almost died. High dose steroids for 2 years saved her, but she was never the robust woman she had been. The docs all said it wasn't from the radiation, that it was an auto immune hepatitis. Whatever it was, I believe the radiation had some role in its occurrence.) Even with mastectomy, I may have to have some radiation near the axilla and shoulder if my lymph node dissection has 4 or more positive nodes. It's always something! Enough rambling about me....

Color Purple: Thanks for the taxol tips. I had my first last week and didn't know about these.

Brandi and Wendy: You have been through so much already, and now this pain and blistering.... Not f*#+ing fair.

Jlstacey and others with ongoing nausea: Ativan/lorazepam is not standard for nausea but it has helped some of my patients, so I tried it, along with all the other antiemetics, and it helped reduce my nausea. I put lorazepam 0.5 mg tablet under my tongue and let it dissolve sublingually - it gets into the bloodstream quickly this way. Please take this all with a grain of salt, I am not a doctor.

May you all have a gentle weekend with no SE's.

RV6gal · March 2015

Brandi, I am also grateful for the support I have received here as well. I don't think I could actually do this without everyone here. I totally appreciate your honesty about the condition of my feet.I am just like you that I want to hear the truth even when it isn't necessarily positive.Because of the information you have given me though, I am prepared now for the blistering to come.I am better able to handle something when I know about it so that's good.The pain is already starting to go away but what I will have to remember is to continue to "baby" my feet so to speak with cream and not overdo any activities. Today I was able to actually go out.I wasn't walking normally but I was walking.

Sweethope, I have to go see my oncology nurse on March 19^th so I will see what they have to say about this.I am hoping if I stay away from hot water, I can go ahead with chemo.If anything, I would prefer to go ahead even if they have to lower the dose a bit.I have read that reducing the dosage is a possibility.I think what actually scares me more about the 2^nd chemo infusion is the muscle and nerve pain I experienced on day 4 through 6 post chemo.Honestly, I have never had such pain in my entire life and Tylenol didn't help at all.It only lasted about 72 hours last time but will that be the same next time?I have kept track of my systems after each chemo and they have never been the same really.Some things are definitely cumulative too but who knows which SE's that will be.

Jenn, I feel pretty strongly that the bath I had caused this issue for me.I think if you avoid prolonged exposure to hot water for either your hands or your feet that you shouldn't encounter this particular problem.I know both Taxol and Taxotere can cause neuropathy but hopefully that won't be an issue for you either.

Jazzercisegirl, I sure hope that your decreased shortness of breath and heart rate are positive signs leading to good results on your Echo! I agree with you too that there is always something with this stupid cancer and no easy solutions.I think the most frustrating part of my feet issue is that I can't be very active right now and I am seeing that impact on my scale every day.In addition, I was warned that Taxotere/Docetaxol causes fluid retention and I'm starting to see the effects of that already. What I am learning from that though is to try and find another alternative instead of getting frustrated.I haven't figured this one out yet but I will keep working at it and hope in the meantime the feet get better too.

Beachbum, I am starting to get the runny nose thing going on now too.I was at the drug store today and it let loose.Luckily I had a Kleenex with me that I could get to quickly.The crazy thing is I can't blow my nose as it bleeds really easily now too.I'm sorry to hear that the runny nose is an issue that seems to last a long time! It isn't painful but sure is annoying!I am using nasogel with does help.Might have to carry some with me though as it comes on without any notice.Wonder what people would think if I walked around with a Kleenex stuffed up my nose..LOL

Have a great weekend everyone!

Wendy

dstar · March 2015

Hello Fabulous Women,

I have been reading and catching up on everyone's posts! Glad to hear, SweetHope, that your heart is in pretty good shape. My tumor was also on my left side, very large, had a full mastectomy, still have to have rads because the margins were so small. I spoke with my rad. onco and what happens is that the radiation is delivered at an angle from the side so it misses the heart and (most) of the lung. I have to have my axilla radiated as well as the lymph node over my breast. Zap. Zappity Zap. BRCA1 and 2 test covered as preventative care under the Affordable Care Act so my insurance will pay 100%. Whew.

Also, I am so happy for you Beachbum that your heart is stabilizing, if I read your post right. I want everything to go the best it can possibly go for you and still want to slap your onco.

Lots going on, thanks for all of the tips for Taxol. I have the PPE effect going on in my feet too, feels like my skin is burning up and going to fall off at some point. Ouch. Started after last AC infusion. I will start icing immediately. I am going to ask my onco if I can take an extra week off between AC and Taxol. I need some time not to feel like a cancer patient and I want my SE to get better before I start another toxic round. I'm thinking she will say no but I'm gonna ask anyhow.

The nausea from 4th and final dose of AC is finally wrapping up. Man, 5 to 7 days of that. I have lost 5 pounds this time. Really eating is just a chore now, sugar tastes so awful, maybe that is a good thing, my tongue feels burnt too and I have taste buds falling off when I brush my teeth. I feel so sexy. hahahaha! Nails are darkening, ready for the nail polish and the tea tree oil. Love that stuff. Also, my skin is hyper-pigmenting, if that is a word, so attractive. I have to wear white cotton gloves on my hands like a proper lady from the 1950s. But, when I take the time to apply all the lotions and potions to my face and hands, I feel better. Concealer goes a long way to. Pretty day here, lots of bulbs blooming.

Plus, I just found at the Butter London (Horse Power nail) website that they have a coupon that ends today for 30% off your entire order

code = SPRINGBEZZIE15

Have a good weekend!

D.

thecolorpurple · March 2015

D, I can so relate to the nausea. I am normally very optimistic and strong and I have felt so depressed today. Very disheartened like this will never end. Crying a lot. Has anyone else had days like this where it seems everything is falling apart? How do you all stay strong? Love to you all.

Kristin

dstar · March 2015

Kristen,

It gets tough, no doubt. I find lots of crying related to steroid crash esp. when it runs counter to your usual mind set. Just knowing that it is not really me but an insanely powerful steroid ruling my emotions temporarily relieves some of my stress, then the nausea retreats a little. I try remember a recent day when I felt good, eating well, no nausea, had a good walk in the park and conversation with a friend. Then, I take an ativan, eat what I can, hydrate and try to sleep through the worst of the nausea. You will have another day tomorrow, another chance to heal and feel better. It's not much I know, just a way to survive the worst days and get through to better ones. Because there are better ones, just around the corner and it's OK not to feel strong everyday, really it's not possible. Be gentle with yourself, this is a lot to deal with, your mood will turn around, it will!

Take good care, Dstar.

PMR53 · March 2015

Beachbum,

Thank you for summing up this crap storm so well!! You made me laugh. All this trouble with everything you wrote. You have unique way of writing and a great sense of humor. We all need this. I bought Biotin today at Costco. Should I start it day after last chemo?

What I wondered is do you have good days after bad days. With no rhyme or reason. Chemo is a sneaky witch.

Brandi and RV gal I am sorry for your feet. What is this caused from? I put Aquaphor on mine. They are occasionally numb.

Kristen and Marjo! How are you??

SweetHope if I get a Bx (one side ) without a lymph node dissection will I be at risk for lyphadema ? I am sorry you are struggling with this. My Mom has it and wears a sleeve. It is yet another SE.

Kristen hope you are feeling better!! Are you still working?

Love and hugs to all. One day at a time.

Patty

SweetHope · March 2015

Patty,

Mastectomy with axillary nodes removed is three times more likely to cause lymphodema than just sentinel node removal (which of course will be removed with all breast tissue in any mastectomy). Also, Radiation can damage lymph nodes causing lymphodema. My PT who specializes in Lymphodema says you can develop it with just one or two nodes damaged or removed.

The Center for Restorative Breast Surgery in New Orleans is performing Vascularized Lymph Node Transfer (VLNTx). It is microsurgery to transplant nodes with their arteries and veins in fat taken from low risk area of the body. This can be done with or without reconstruction. Their doctors are in the top 5% of doctors in America for 2014. They are also a mission partner here at BCO.org. Please have your mother check it out.

PMR53 · March 2015

SweetHope,

Thank you for your reply!! My Mom is 80 now and has lived with it for 10 years. She wears a compression sleeve. She has chronic a fib now that may have been caused by the adriamyacin she had. She is relatively healthy though. Because of her age she wants to just keep the status quo and she continues with yearly mammograms. I already had a negative SNB, so when I have my MX in April no more lymph nodes should be removed. Hoping this will alleviate any lymphadema . I have my last chemo tomorrow except for Herceptin which continues until Dec. There doesn't seem to be a lot of teaching or prevention or even care taught for lymphadema like there should be

PMR53 · March 2015

Kristen

I have those days all the time!! One day is good and then the next crying and depressed. I found that if I can stay on a consistent sleep schedule I do better. Ativan helps also. The Nausea is a given for at least a week on my chemo regime. No matter how many anti nausea meds I take. I am dreading tomorrow but at least the worst part of chemo will be over. It has kicked my @!!. Hugs to you and I hope you can enjoy your Sunday.

Patty

Noor46 · March 2015

Sweethope: glad you got good news on all your tests, but sorry you don't know of and when you can continue chemo.

Brandi and RVgal: I am very sorry you have all those feet problems, looks quite painful. I will start taxotere on the 24th, which has about te same SE's as taxol, so I'll take all your advise and I consider taking some ice for my feet to hospital (for my hands we get some cooled bracelets, so hands should be fine).

I looked through the possible SE's and kind of scares me! I was lucky sofar, but I'am afraid my luck won't last.

Beachbum: for now I didn't gain weight, but a pitty you did. Problem is I'am already overweight so the last thing I want is to do is to gain anymore. Not always easy, since I am less active, trying to eat less, but sofar sogood.

thecolorpurple: nobody can be strong all the time, especially if you have a lot of SE's. When I have a difficult time I try to look forward and say to myself, chemo will end not to far in the future. I'am now halfway and I feel I can see the end of this tunnel.

Patty: my MO wants to do mastectomy + ALND, but because I am very afraid to develop lymphedema I don't want ALND if the neoadjuvant chemo works well, then I only want radiation of the axilla, which makes the risk on lymphedema about 10%, with ALND it is about 20%.

For know I'am feeling quite well, not to much fatigue, weather will be good next week. So tuesday I will go ride my horse all day with DH. Maybe I'll regret is wednesday, but that is something I really missed since all this crap started! Anyway I have planned a week trail end mai and I am determined to go on this active holiday.

Have a nice sunday,

Noor

Beachbum1023 · March 2015

Noor, thank you! The weight gain is making me mad. I am 5'10" and have always been 130, now not so much and it is not so fun, plus all my clothes are size 4 and 6. I can hardly get dressed, thank goodness for stretch jeans, but even they have their limit! So I can't wait to get out and walk. Winter!!

But the best medicine is a sloppy horse kiss! They have the best nose in the world. I had a Tennessee Walker, and goats, chickens, ducks, and rabbits on the mini farm. Nothing smells better than new hay. A roll in the hay loft will surely make you feel better. I think a long ride on Tuesday may be a good thing. Worry about Wednesday when it gets here. Enjoy, be safe.

Brandi999 · March 2015

About the nausea thing, people are going to think I'm full of it but for me, my meds hardly make a dent in the nausea. The best thing I ever found that actually helped was this drink I have found once in a foodie store and once brought by a friend but it's kind of a far drive to get it. It's ginger, honey and lemon all together and it's made for nausea. What I did instead was made some really strong ginger tea and put it in jars in the fridge to add to my water during bad days. Other than that, I take meds to make me sleep through it. When all else fails, medically induced coma.

I have a question. Does lymphedema go away?

Patty, all I know about hand and foot syndrome is that it happens sometimes as a side effect to chemo. It's like an internal burn. I was told it was unusual to see with A/C though, and happens more with "other" chemos but I can't tell you which ones because I didn't ask.

RV6gal · March 2015

http://www.breastcancer.org/treatment/side_effects...

Not sure if this link will work but here is some information provided by this website about PPE

RV6gal · March 2015

http://www.breastcancer.org/treatment/side_effects...

Brandi, here is a link about LE. It seems LE can be permanent.

Brandi999 · March 2015

UGH! This is another thing that makes me not want to do radiation.

Brandi999 · March 2015

I know I shouldn't do this but I just looked up images of lymphedema and found something bizarre to give a bit of comic relief. Why anyone would make a cake for it, I have no idea.

momof32015 · March 2015

Brandi, how did your symptoms for hand and foot start? I think I am starting to show symptoms and am worried. My heels on my feet are painful to walk on and my palms on my hand have an ache and burning sensation.

RV6gal · March 2015

momof32015, I'm not sure if what you are experiencing is PPE. I would definitely mention it to your doctor. You can try putting ice packs on them on and off to see if it relieves some of the burning sensation you are feeling. That did help my feet.

Brandi999 · March 2015

momof32015, What I felt was like my feet were burned like if I walked on a hot asphalt street. My skin was very tender. It wasn't the same as nerve pain. I had red spots, basically where my toes touched each other and wherever I put pressure on them.

JazzerciseGirl · March 2015

My echo results show no change in my EF, which is good. It does show that I have borderline left ventricular hypertrophy. This means the walls of one of the heart chambers is thickened, maybe due to high BP. If it gets worse it can cause heart failure. Another good reason to loose weight when all this chemo is over

Thank you, everyone, for your support about this. I've been so scared about the echo.

SweetHope · March 2015

JazzercizeGirl, So happy about your Echo. Yes, isn't it maddening waiting for results? My Cardiologist wasn't concerned about the mild thickening of the ventricle muscle. Easy for him.

I am really down about my weight and my MO told me to not be so tough on myself right now. Hope that means a free pass on the spaghetti I had for lunch ;0)

Tomorrow is Muga and hopefully back to AC #4 on Thursday.

jlstacey · March 2015

I'm just checking in to see how everyone is doing? My hands look like they have aged ten years and I feel the need to rest a lot. Food is a constant issue for me due to taste buds vacating the building. Im doing well otherwise and happy to have sunshine in Detroit. I'm 6 days post my last AC.

I hope everyone's SE are not too bad, RVGal and Brandi, I hope your feet are bearing up OK. SweetHope, I hope your MUGA today has good results.

Jena

RV6gal · March 2015

Hey jlstacey, glad the sun is shining and you are doing pretty well. I have lost my taste buds too. It doesn't make me feel sick luckily but I get no enjoyment at all from food. It is all slightly off. I can't wait for that to go away. My feet are getting better all the time thankfully. Still a bit sore but no longer warm to the touch so I think they should start really healing soon.

Sweethope, Thinking of you today and hoping you get great results from the MUGA scan. Hope they get the results back to you as soon as possible also!

JazzerciseGirl, Congratulations that your EF function shows no change.That's great. Hope you are feeling better too.

Brandi, that lymphedema cake is crazy!! Just goes to show people deal with issues differently! Wow!!

It seems like everyone is a bit quiet right now. I hope that means we are just busy as the weather improves and not dealing with difficult SE's.

Wendy

mommacat4 · March 2015

Rv6gal, brandi, are the blisters and feet patches from the Taxol? That looks very painful and I am sorry you are going through that.

Ladies, I am sorry I haven't been on here for a while. I actually didn't realize how many days it's been. I have been trying to get things done around home and rest too, however it seems rest is not in the cards for me. I tried to lay down just an hour ago and within the first 1/2 hour I got 2 phone calls, a text message, my son interrupted me twice and DH woke up. (He sleeps days and works nights) I gave up on trying to rest. Last night I was totally exhausted and my 14 year old daughter wouldn't let me rest. She kept showing me videos and pictures on her phone. It was just her and I home. Finally by 1:00am after me telling her way too many times to go to bed, she finally did.

Jlstacey, sorry about all the nausea, I did ok to keep it under control by using my meds and the cold foods like jello and popcicles. And plenty of water. I feel waterlogged quite a bit of the time. I drink orange juice a lot too. but is has to be cold. And I too have dizzy spells but I have had more of them since I have been on Taxol than on AC.

SweetHope, sorry about the neurapothy and the lymphoma and lymph nodes. I wish I had a suggestion for you. All I have is hugs and prayers. I hope you can go straight on the hormone therapy.

Beachbum, congrats on not needing any more Chemo And the reduced risk of heart failure. Thank you for your encouragement and love.

Kristen, thank you for the breakdown on everything. It is helpful. I hope you are feeling well today. All these things we all are going through really stink and I wish my family had some compassion but they will never truly understand. I guess mom isn't allowed to be sick or have bad days. It's like they think I can still do everything as before. At least they still expect me to.

If there is anyone I forgot please forgive me. I wish everyone well. Have a great day.

6doggies · March 2015

Hi Everyone, I recently found this site, thank God!! Smile I started AC on January 23, 2015, I did pretty good with that, now moving onto Taxol this Friday and I'm really nervous about this one. Did any of you have bad experiences with Taxol.

Starting Chemo January 2015

Comments

Categories