Starting Chemo in November 2017
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Nonahope People in the East and Midwest deserve a break from the weather. I hope it comes soon. In the meantime bundle up and stay safe and warm! Time to read a good book or try a new recipe?
Kat I hope you don't feel rushed to make a decision sometimes things become clearer with time.
Hope99 Let us know what you find out about your bleeding.
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Kivans...Fortunately, I'm not a person who minds being home. I'm an avid reader and love trying new recipes. I can always keep busy. So, I only panic if the weather keeps me from getting to chemo...but, supposedly, the sun will be shining on Thursday, although it will be cold!
Hope
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Hi all - Chemo #3/ Day 7
I wish I had something positive to say. I took Truman for a walk yesterday, forcing myself outside for a few minutes and thought I would have to call 911. I have zero energy. I just wanted to lay down in the snow and go to sleep. Another 3" of snow today, so I can't get out. tonight down to -15 degrees. Hard to take a deep breathe. They only way I could go to the DR is to call 911 - and I refuse. This is exactly what I was afraid that would happened.Hope 99 - yes, like just about everyone else, I had a hysterectomy - but I do have severe leg/ankle/hip bone pain. Its unbearable. I just don't understand. I was feeling so good.
mkn - I use essential oils, but they are not helping. The smells makes me sick. I tried the lavender - also made me sick. (I know that's odd) I also have "angelia & Copaiba" I've rub it on my feet and put on socks but the smell is so overwhelming. I've been to therapist over the years - can't find a good one. They all want to play word games. Truman is my best therapist.
Pepto Bismal is my friend.
klvans - I;m so sorry to hear about your Mother. I am deeply afraid my Mom will die will I'm stuck at home on Chemo, and won't be able to say goodbye to her. She just sleeps all the time, so unlike her. Well, she is 88.
Magari - I think your pretty spot on with your meds. I take Dexamethasone 4mg 4x the day before and day after chemo, during Chemo I am given Emend & Aloxi for anti-nausua plus Ativan, (In IV) plus more steroids. The day after chemo I start my regiment of Compazine & Ativan every 6 hours for about 7-10 days. Claritin for bone pain, (which isn't helping) I have the Neulasta Pod go off day #2. I take Acyclovir to keep shingles at bay, and Zofran 8mg on hand - but have not used it. Plus Omerprazole, Tums, Pepto Bismal, Gax X and Maralax. Don't dare take Imodium. Constipation a HUGE issue. A lot of stomach issues but no Nausea. Just bloating and cramping. What a wonderful colorful picture you painted going to the market and making your wonderful dinner.
We shall get past this - Everyone take care. Rj
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I have not posted on so long, have not taken or really had the time or energy. I was only supposed to have 4 rounds of TC starting the first week of November, the plan was to do them via IV. During my first round of TC, the chemo leaked through my vein and caused a chemical burn to the back of my hand, wrist and about 3 inches of my arm. It showed up the day of my follow up appointment the next week. At first MO thought it was an infection, so I was admitted to the hospital for IV antibiotics. When it did not get better, he realized what it was. I kept telling him during my follow up appointment that my wrist hurt during the IV, even during my pre meds. We tried 2nd cycle with port, but wrist flared up really bad, it was bright red, raw and very painful. MO decided no more TC and to go with 6 rounds of Taxol. I have had 3 treatments so far and have no. 4 tomorrow.
Very hard not to have resentment, as this was preventable and was caused by the way my IV was put in. I would have completed my 4th round of TC on Jan. 8th, if this did not happen. Now I have 3 more Taxol rounds and two cytoxin after that. I
My biggest SE of Taxol is exhaustion. At least I do not have 2 "flu days" like I did with TC. I go to work everyday and work from home the morning of treatment days.
I know it is acumlative, so not sure how I will feel after no. 6.
I know there is some debate over 4 or 6 TC cycles, so MO may want to do more than just 6 Taxol cycles. Had anyone else talked with their MO about the benefits of more than 4 TC cycles?
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Hope, when I had my chemo education, they said it could cause irregular menstrual bleeding if you are still having periods. I hope everything turns out OK.
Erika, I’m sorry you got a chemical burn. They tried to use IV for four treatments on me. The first treatment during pre chemo drug infustions, my arm swelled around the needle. They switched veins, and everything went OK. 2nd treatment I had a similar reaction, but they insisted everything was OK. Two days after treatment, my arm got red at the IV site, and then turned red along the vein to my elbow. They called it a flare reaction. It felt like a burn and it peeled like a sunburn. I asked for a PICC line for the last 2 treatments. Yours sounds much worse!
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Oh mercy girls - I have felt horrible. Yeasterday after I posted, I never went upstairs to get dressed. I kept feeling worse, couldn’t eat or drink. Dozed in my chair all day. Barely could get myself to bed. Tried to drink water - again taking my anti nausea pill which made me feel that’s all I had in my stomach. I’m sure It’s making me constipated.
SDK - same as you - just got up to go to the bathroom. Today I managed to force an iced breakfast drink down and a few crackers and cheese. I ate another mandarin this morning, but I really didn’t want any of it. Absolutely no appetite. Everything seems gross right now. Had a fever of 100.1 - took Tylenol which got it down.
Magari - I’m impressed you can eat and cook a wonderful meals throughout chemo.
Kivans - good they got your infusion straightened out. I’m so sorry you lost your mother in the middle of this mess. Life can be so challenging.
Hope99 - did they figure out your bleeding problem? You have really had some problems. Hopefully it was just your period.
Mkn86 - I’ve read you can be reconstructed at any time after a mastectomy. (Doesn’t have to be immediate). You have plenty of time to think about it. I’ve seen some excellent results in photos, and you really get a perfect boob job in the end. If you don’t want anything artificial (like implants), consider the flap reconstruction as it uses your own skin. I had a friend who ended up using that method after her body rejected implants, but that doesn’t mean it would happen to you. It’s a personal choice. Just keep reading and asking questions.
Ok - back to snoozing or barely existing in my easy chair - this is enough to make me want to skip my last treatment. I think my body is telling me it can’t take this anymore. I don’t remember even a flu feeling this bad. I’m too old for this
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rljes and Blair Thank you for your condolences. Yes, life is challenging and chemo makes coping harder. My family is delaying her memorial service for a few months so I can attend. She was a terrific mother and person. I'm lucky to have a sister fairly close by who has helped me through this.
I'm so sorry both of you are suffering right now. I'm joining you going through the tough days. I tend to do well the first 24 hours. After the Nuelasta shot I have a rough time for awhile. We will get through this though. Others have done it and we will too.
Nonahope I love to read too. I like staying home but sometimes I need to get out too. I'm the outdoorsy type. Being in nature makes me happy.
Erika that's something else about your IV. How awful for you. I always get nervous when they put mine in. This time it took 3 sticks and I have a lot of bruising. Definitely no fun. Your resentment is understandable. It can't have been easy to have your treatment plan changed like that. I hope the rest of your treatment progresses without incident.
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Kivans....I am so sorry about your mom's passing. I'm glad the memorial service will be delayed for you to be able to attend. May your mom RIP.
After reading the horror stories of the IV issues, I am soooo happy my doc insisted on a port...no if's, and's or but's about it.
Cold and snowy here in Cincy. Have a good day, ladies!
Hope
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Two months since my lumpectomy and lymph node dissection, and suddenly the lymph node site is infected. It hurts and I'm annoyed
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Oh no, Meow....Do they know what might have caused the infection?? I would be more than annoyed.
Hope
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Hi all - Chemo #3/ Day 8/ when will I ever feel good again? My feet and Ankles and left hip have severe bone pain that I can hardly walk. I have to be so careful getting up. If I should fall and break something, No body would find me for days. My fingers are numb. Stomach pain.
I do have a chiro appointment in 2 weeks. I just hope I have enough energy to go. (day before Chemo#4)
Sorry BLair your feeling so bad. I understand. I still have a huge appetite - Pancakes are good. I drink Ensure to get some protein and vit. I'm hoping meals on wheels kicks in pretty soon - I'm running out of food for me and Truman. Big D has finally kicked in. Oh what a relief it is. 4 days of Maralax did the trick. May I ask how old you are? I'm 59.
This morning -4 degrees with windchill of -20 below. Somehow I need to go out and start my Jeep to make sure it doesn't die on me again. Brrrrrrrrrr. should have kept my ex- husband.
at least he was good for a couple things. Suppose to get up to 22 degrees tomorrow - so I shall try to go see MOM - hope she doesn't freak out seeing me with a mask and gloves on. Someone has to go pay her bills and help her out.
Meow - sorry you have infection. Its always something we have. Question : Meow - how intense is our Chemo treatment? Did your MO say its worse/better than others since we are HER+?
I'm with Hope - thankgoodness for my port. I fought against it, I was terrified of it, but I forget its there and Absolutely no issues. (except when I accidently hit it - ouch) I had no veins left.
Erika - sorry your having such a tough time. It seems the more chemo we have the worst it is.
orangedaisy - sorry about your picc line.
hope everyone feels better - later,rj
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#4, day 5... my husband took me to clinic yesterday after I couldn’t eat or drink. They gave me IV in my port for hydration and nausea medication. This morning, I feel good and my vision is better, dizziness is gone. They said the worst is over and that the weekly Taxol shouldn’t be as bad. It’s hard to believe I skipped through 1-3 and 4 hit so hard. Looking forward to better days
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klevans - So very sorry to hear about your mother. But glad that you'll be able to attend her memorial.
Also very sorry to hear that so many are dealing with difficult physical challenges and side effects right now. Hope they resolve and folks are feeling better soon.
I myself had a a sudden onset of nausea and Big D yesterday afternoon, a full week after my most recent infusion. Took a Zofran and some Immodium, but still felt pretty awful through the evening; no appetite for dinner and in bed by 7 pm. Still not feeling my best this morning but will go to PT nonetheless.
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Good afternoon ladies!
I had a surgical f/u this afternoon, figured he was just going to look at me, say we’re good and send me on my way. Nope, sure didn’t. Apparently I have to do radiation next, which I was never informed of, even though he swears he told me. I know he didn’t because I expected him to. But whatever, it is what it is. Does anyone know how often they schedule it? From what I am reading, they do it daily for 5-7 weeks. There is no way I can accommodate that kind of schedule unless they are open until 6 or 7. I’m freaking out over this. I can’t take 7 weeks off work.
I know a big fat brownie sound really good right now...lol.
Stress rant over...
I’m so sorry everyone is feeling so bad. Knowing this is cumulative, I’m getting worried about the next one. No bigD yet but I keep waiting for it. It’s going to come when I least expect it.
Positive vibes to everyone!
Tina
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Tina... WhenI had radiation it was Monday thru Friday for six weeks. It is quick in, quick out. I had no bad side effects from it at all. It took more time to put a gown on than to have the radiation. Hopefully, you can get an early morning appointment before your work schedule? I found it to be no big deal...just tiresome having to go on a daily basis. My facility was very good at working with me and scheduling my appointments at the same time every day.
Hope
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rljes... I don't know about the intensity, but suspect it isn't much different than the others. The real difference (as I understand it) is that we get herceptin infusions every 21 days for a full year, after our chemo has ended. Herceptin is not supposed to have as bad of side effects as the chemo drugs. My MO tends to blame every bad thing I have on the Taxotere.
Started an antibiotic this afternoon to deal with the infection at the site of my lymph node dissection. Seeing the surgeon in the morning. I suspect that she will drain it and send out for labs to see what is going on in there. Unfortunately, chemo wipes out the body's natural defenses. Under normal circumstances, our bodies could fight off infections and exposure to some of these bacteria. Chemo makes that impossible, and so we end up with complications. My oncologist said he will check my labs Thursday morning and decide whether to postpone my third chemo or go ahead as scheduled at that point. I'll be more than 24 hours into the antibiotic, so as long as my white blood cell count is okay, I will be surprised if he postpones. No fever... just pain and inflammation at the site.
I'm sorry to hear about all the difficulties people are having right now. Chemo is hard enough without complications with the IV, multiple needle sticks, chemical burns, etc. I am grateful for my port.
Klvans - I'm very glad they are able to postpone your mother's memorial service so that you can attend. Hugs to you.
Very cold and snowy here in Northwest Ohio... but I hear the weather will be changing soon. Hard to complain when I hear about what you Minnesotans have to deal with!
Back to work for me...
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Hi Tina,
After my BMX, My RO & MO were actually fighting over me who was going first - chemo or rads. ( I havn't ever heard of having radiation first then chemo) I don't want radiation (skin disease) so Chemo won out. I'm still on the side of "NO RADS". It would take a huge percentage uptake of keeping occurrence at bay to go the Rad route. I think some of the Doctors just 'assume' you know what they are talking about, assuming that you knew you had to have radiation.
Both Meow and Tina - you both are HER2+, and we are are taking the same - so I'm 'assuming" after chemo the RO will be calling. I'm not even going to think about Rads until mid summer - or fall when it will be cooler.
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My work schedule is 4a-4p so unless they have a late schedule this is going to be a mess. Their biggest concern is because it was a grade 3 and ki-67 of 70%, he said the growth rate is just too fast and aggressive to risk missing even 1 cell. My lump nearly tripled in size in less than 4 weeks. I guess I will just let it play out and hope for the best.
Tina
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I thought today would be better, and it was slightly, but not near my past Day 5s > 3rd treatment. Had to take a child’s dose of laxative that got me going gently at least, but still messed up. Food and drink is still gross to me. The only thing I could think of that sounded good was a McDonald’s plain hamburger. I haven’t had one since before my bypass 3.5 years ago! It has protein, since I lost 4 lbs. in last two days, I don’t care about the fat. My friend said she would pick one up for me after work. I hate bothering anyone for such a silly thing, but I need to force myself to eat something. Quit the nausea pills, which I do on day 5. Hopefully that is ok. I have had two bouts of fever also in this round. I feel absolutely washed out and still considering to stop this. My body kept saying I can’t take this flu groggy tasteless feeling - STOP!
Rljes- I’m probably the oldest one here at age 68. I think that’s why I’m not tolerating it well. My body feels so abused with what it’s gone through these last 4 years. I’m definitely complaining to my OM that if treatment 4 is worse than this - forget it. Please be careful walking around your house. Hold on to things, even the walls for balance and take it slow. (Just mothering here). You and Meow have to be so strong to put up with your cold temperatures. We will freeze tomorrow, but Tina and I are use to warm FL winter temps.
Meow - that is a surprise getting an infection in your lymph nodes. Hope the antibiotic gets rid of it quickly. Let us know what the lab results say.
Radiation for me was told as 5 weeks M-F for 35 doses. Requested the face down beaming process to protect my heart. My radiation oncologist is great as she understood my concerns. Not too afraid unless my plastic surgeon made me too small to dangle down! Just hope my back allows me to face awkwardly face down. Should be similar to MRI. By the way my itchy scalp stopped and back is better. Nose is still bloody and stuffy - weather not helping
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Nonahope, Magari, and Meow, thank you for thinking of me regarding the loss of my Mom. I'm glad the memorial has been postponed. It'll give me and my family time to adjust and plan a celebration of her life.
Meow I'm sorry to hear of your infection. It sounds like your Dr. is staying on top of it. Let us know how it goes.
Tina I hope you can work out the radiation thing. I'm also grade 3 so yeah I feel like I have to do everything I can.
It sounds like lots of us are struggling with side effects right now. I hope it improves soon for all of us.
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hi everyone...
klvans, my condolences to you and your family. i cannot imagine having to go through losing your mom at this time. we are here for you.
rljes too bad the essential oils make you feel more sick. some days when i’m nauseated i rely on three things: peppermint, ginger, and citrus scented things. I avoid greasy food too becauae it aggravates the nausea but i hope meals on wheels also kicks in soon for you. i’m hlad truman is there with you.
meow i hope the infection subsides and that your doctors find out what’s going on.
tina, i still need rads too. i’m grade 3, ki67 80% and triple neg. So i suppose that makes rads mandatory for me. especially since at diagnosis/staging they confirmed one node involvement. from what i’ve been reading some centers have longer hours operating hours for radiology. in order to accommodate more patients who cannot make it to appointment midday.
same here blair. with taxol 10, i feel a bit wobbly and it’s takihg longer to recover from it. yesterday i went up the stairs twice in a row and carried a backpack with a laptop the second time. i was huffing and puffing after. I move slower these days and for someone who used to walk fast (making up for short legs hahaha) that can be a little bit frustrating.
i’m on chemo break this week. and hoping i can go back to work for a bit and take care of a few admin stuff and also hopefully by the end of the week i have enough energy to walk around in a bookstore and not be tired after.
it rained here yesterday. and i missed the smell of rain. we have a word for it in my language that not a lot of people use anymore: alimuom
i am adding a photo of Buddy and hoping it somehow cheers everyone up a little bit.
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Thank you for your condolence mkn86. I appreciate it very much.
Buddy has such a sweet face. He definitely cheered me up!
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What a beautiful dog! Something about animals just make me smile and boy do some of us need smiles!
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Chemo is done. I almost feel human again... and the cold caps helped me keep my hair. I am so grateful I had all of you lovely ladies by my side through all of this... even though I didn’t check in often, I have followed all your stories. Thank you for being here, despite the terrible circumstances. You all helped me stay sane
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Meow...Hope the antibiotic kicks in quickly so your chemo will not be delayed.
Blair...And, how was that hamburger?? Sometimes, we just need a fast food fix. I seldom eat fast foods, but there have been times when my car whips into Wendy's for a junior cheeseburger deluxe.
Oh...and you are not the oldest one on this board. I will be 75 in April.Tina...I hope something will work out for you with your work schedule...maybe, a lunch hour?
Kivans...I've attended a few "celebrations of life" and they are so much more uplifting than attending a funeral service. Many hugs to you...I know this is most difficult for you.
Kat...Buddy is beautiful. We have two goldens in our family....Molly and Pippa....wonderful dogs!!
Aymerz....CONGRATULATIONS!!! So very happy for you. And, one day you will look back and say "how in the world did I do it?" Enjoy your chemo-free days ahead.
Taxol #7 and X-Geva for me tomorrow. Hoping and praying my side effects remain minimal.
Hope
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Nonahope I hope your side effects remain minimal as well. You seem to do pretty well on your regime or perhaps you aren't a complainer! How many rounds will you do?
Yes, it's been a challenging time. I have a large, close family and kind friends so that has helped. My sister lives fairly close so we get together and comfort one another. I try to honor my mother's memory by counting my blessings--it's what she would want.
Aymerz congratulations!!! You made it through and look so happy! I can't wait to be on the other side of chemo! Enjoy!!!
Yesterday was the day after my nuelasta shot and that is always the hardest one for me. I think today will be better.
I hope all of us feel better today.
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Aymerz33- what a cute photo of you and your son! Happy days are ahead now that chemo is in the past. I’m glad you were able to save a lot of your hair! Will you be going through radiation, or did you have a mastectomy?
Nonahope - I thought you were 65 for some reason. I think this chemo is aging my skin horribly. The hamburger was a bit tasteless, but I got it down. I had my usual mandarin and toast this morning with some coffee, but still no appetite. I’m force feeding and I still feel absolutely wiped out. I’m weak and have aches and pains, but that doesn’t bother me as much as the flu feeling does. How did you not have so many side effects? You are sooo lucky! My back feels like it’s going to act up again. Feels stiff. I know it’s a side effect to these drugs, but my OM says otherwise. I never had back problems before. If I feel well enough, I’m going to call my OM and let them (her) know I can’t take this awful flu feeling and grogginess if it gets worse with treatment 4. I think it’s bad to have your body lose so much weight so quickly and have the stomach just full of nothing but drugs. It’s no wonder our digestive systems get messed up. My first treatment wasn’t that bad, but this one is kicking my butt. So it increases my reoccurrence 2% - I don’t care
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Blair - rads is next. I went with lumpectomy. Today I’m going in for my appointment to get my “tattoo” and baseline CT scan. I believe I’ll start next week. Then, six weeks to freedom
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How soon do people usually start radiation? My Dr. suggested starting a month after chemo. Just wondering if that's typical.
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Kivans...I'm not sure how many rounds of Taxol I will end up having. Remember, I have metastatic BC in my bones and bone marrow. My onco just told me about six months. I have Taxol 3 weeks in a row, then I'm off a week.
Blair...I wish I were 65..LOL I do remember when I was on your regimen of C-T, I had a few of those flu-like days and the taste buds were horrific. I think I lost a total of 25 pounds when I was on C-T. My onco told me to eat whatever I could stomach...he even suggested that a glass of wine might help to increase my appetite. I love wine and I tried, but couldn't tolerate the taste. I lived on cottage cheese and ginger ale until that third week when I felt good. It was much worse than the Taxol I'm on now. So, I do understand you being so miserable. How many rounds of C-T will you have? I had six total....one every 3 weeks. I felt ok the first week, not so good the second week and felt great the week before I went back for more!! That seemed to be the norm for me all the way through. I hope you can hang in there to complete your rounds. Hugs!
Hope
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