Anyone Starting Chemo in June 2016

Heathet

ClarkBlue - I'm so happy for you! I think I'll be starting rads sometime in Nov/Dec. Hormone therapy will also be part of my plan. Please keep in touch!

krekre

Congrats, Clarkblue! All those things are in m plan too but not until late this year, like Heathet.

Ladies - I have a hard time getting down the water I should, so I use an app on my iPhone that I found I don't hate all that much. (Resentment leads directly to the death of any person-app relationship.)

https://itunes.apple.com/us/app/mywater/id66524473...

I also tried Plantnanny that lets you grow plants, but I preferred something more straightforward (and I didn't want to be responsible for killing any virtual plants).

https://itunes.apple.com/us/app/plant-nanny-water-reminder/id590216134?mt=8

damaxx

Hi Everyone!

I just had my third chemo infusion today. I am halfway through chemo, then on to surgery. I am feeling better than what I had expected when starting this journey. The doctor reminded me today to do better drinking water. My only complaint is fatigue and my stomach being upset sometimes.

Hope you other June Chemo girls are doing good.

boobsBgone

I went in for IV fluids today as well. could not handle the pain and headache anymore. my NP came to talk to me, forcibly reminding me about our conversation about drinking more (i am way off) and making sure I take the meds consistently so I don't crash and then try to recover - which is what I am doing. I do not mean to be so stubborn, but I have never been one for taking meds.

She reminded me that if I do not feel good, do not wait to come in, that is what they are there for. If we need the IV fluids in-between tx, then we get it. It is about us feeling better, with their help. now, if I can just get out of my own way and do that.

i honestly have to admit, i am stubborn and do not like asking for help and always think, i'll be fine, i can do this. but, honestly, i have not been able to do it my way, no matter how strong I am - cancer is a big deal - and I need to ask for the help. you all motivate me, sharing what you go through and seeing you overcome it makes me smile, knowing I can do it to.

I have asked my NP about having a conversation with my MO about stopping chemo tx and going to surgery and what impact that will have on my recovery. She said the treatment plan ensures the proper outcome that has been tested already, doing anything different changes the outcome - which she reiterated I will talk to the MO next week before #3. Has anyone else considered no more chemo and going to surgery then radiation. my husband wants to have me stick it out, only 3 more to go after next week, the half way mark. i just needed some advice and courage from those (you) who know my emotions and fears. I do not feel alone when I am online with you, though hubby says I am not alone but he loves the fact this link is here for me since you all are living with cancer like me. unfortunate we have it, fortunate we have found each other.

I have been crying more and I am not sure why, i am guessing because I feel sick all the time and feel I am missing out on my life. I have the same feeling as everyone that posted - that out of body fog. I want off this pitty pot and and to enjoy the times I feel good. I have had nausea and headaches since last infusion and I want more than a few hours of good times. I hope this IV fluids today will get me through the weekend.

I do not want to be a downer, I am sorry if I sound like one. I just want you to know I am fighting and will stay fighting until I win. I feel comfortable here talking and not so much with the people I have near me (except hubby - he's amazing)

OH - did better with water today and finally had real food - pizza! So glad all of you are doing so well and pushing through the SEs. cancer women are the strongest and most amazing people - aren't we! Tomorrow I plan to enjoy the outside world a bit. though staying indoors since it is supposed to be 112 tomorrow. hot hot hot.

May you all stay hydrated and sleep well!

Little-Red-Corvette1

Hi All -haven't checked in for a while. ClarkBlue congrats!!! Just finishing up my off week getting ready for AC #2 on Monday. The first week was as I suspected. Had to adjust to serious diet changes. The second week started ok. I went to visit my niece on Tuesday then I had a crash on Wednesday took me out for the day. I don't know if I did too much but I really did not think I would be so physically restricted. I've been taking it easy as its been super hot and humid here. I'm tired, my scalp itches, and I had 1 pity party. I know We must do it. We will be strong. We will fight. Prayers for all. Love the p

labscientistmom

.hang in there everyone!! You are braver and stronger than you think. Got my blood drawn today for round 10 next Tues, convinced the oncologist to peek into my poor bleeding sinus. He is sending me to see ENT doc and have a CT scan. Yay, cause with 3 more rounds of taxol its just gonna keep eating away. I felt pretty yucky yesterday w/body aches & headaches. Was glad to feel a Bit better today.

Moondust: my job @VBS is to man the first aid table and keep track of time & ring the bell for the station changes. I don't have to interact w a lot of kids only the few that got hurt. We didn't have many.

Hope you all have a better SE day tomorrow. Blessings & hugs, A

krekre

boobsBgone -- I'm sorry you are struggling so much. It sounds like you are having trouble letting go of having control over what's happening to you. It's the scariest thing. I'm right there with you, I still am very upset by how much is beyond my reach and control. But if you can hang on... and try to remind yourself it's only temporary.

Maybe shift your thinking that you are taking back some of the control by drinking your water, taking your meds. You can't control the cancer but you can control how you fight it. And you are so strong... we've all learned that about you.

You have a hot husband, a motorcycle, and you rocked a mohawk. Water and meds don't scare you! Do what you gotta do! Take control... drink that water out of beer bottle if you have to!

I would think your inclination would be to fight it with all you've got... it looks like that's what you've been doing so far. And that, unfortunately, means keeping up with the chemo. (And if you drink your water and take your meds maybe it won't feel quite as bad.)

Ultimately, you have to do what's best for you, and only you. But I hope you decide to stay the course. I really believe you can do it.

bbbb

Boobsbgone - I understand your frustration - I too think of stopping chemo all the time but I know I have to continue - I think we are just getting over the hump of halfway done and it will get better - hang in there - we are all with you girl - you are not alone in your feelings and misery with this treatment - we will lift each other up and persevere until the job is done - you are on my special prayer list today!

Lab scientists and any others taking l-glutamine - I know it is good for neuropathy but does it help the gut too? I saw a description of it and it seems to have benefits for digestion. I have had such a time with the big D on and off and was hoping it might help. Where do you get it and how much do you take?

Thanks and wishing everyone a happy Saturday!

lilyp6

Well I got a new "bad SE" day of the week to cope with yesterday. My husband was here, so he babied me, brought me water, Ensure, and Zofran. I had a short vomiting session in the AM, then spent the day resting and controlling mild nausea. It wasn't too crazy. By evening I was craving a grilled Dodger Dog (WTF??) I woke up feeling much better, if weaker today. My oncologist's PA called to advise me to take 325mg of Iron/Ferrous Sulfate, twice a day with orange juice, to boost my red blood cells/hemoglobin count.

damaxx: Halfway through is something to celebrate, and you also just reminded me to go get some more water!

Clarkblue: I hope you're going to pop in to post some updates. Some of us will be riding the chemo train for awhile. It would be good to hear how you're doing.

Acie: I know my "GAS" meter has been re-calibrated for sure. Whatever isn't serving me is going right overboard.

SBB: Welcome back, this is a great group!

Littlered: I am cutting back on activity except for exercise that I plan for. I keep remembering the oncology nurse telling me to "listen to my body" and trying to rest more. Sleep seems to help me the most. It's definitely big adjustment to make.

Boobsbgone: I can't say it any better than these other amazing women have. You've got only 3 more to go, so I hope you move forward with it. Do not leave any room for regret with your treatments. I do understand about feeling like you are missing out on life. I'm going a little stir-crazy here, too. But I have y'all to keep me company and to make me laugh. We are surrounded by support.

Anonymous

Ladies,

Please do forgive me for being naughty. I have been making use of our Facebook account instead of here....I will try to keep coming in here too....

Hope everyone is doing well. I had a rougher time of it this third chemo...but still only sick three times over a period of 3 days. Was up day 4 and taking pics of my hair after 7 weeks of chemo haha...(me and my selfies).

I have been fine apart from that wee bit of sickness. NO mouth sores yet. No constipation or headaches or rashes or nails falling off or infections or UTIs. I am baffling science I think...well I am baffling myself really coz I am normally a very sickly patient. But we Scots are hard...!!! haha.

I also had a period. It was a little bit heavier than normal, but last only the normal 5 days and then stopped. Had visions of me bleeding to death and looking like that lassie Carrie in the shower!! So that was a plus too.

I have decided to cut out all sugar in my diet now. So along with trying to source everything organic I am now only making foods and cakes that have zero sugar in them.

Have watched a fair bit of that Kelly Turner on Radical Remission on YOUTUBE, and got great ideas about the big things we ladies need to get in order:

1. What we eat (cut out sugar, eat organic)

2. Exercise and weight

3. Cut out stress

Those are THE big 3 apparently and so I am aiming to get the last one sorted soon. Needing to reassess work and how to make it more manageable and less stressful and exhausting.

Interesting to read all about your RADS info Moondust. I am dreading this in Sept. Did they give you any time off after chemo before you started it?

I am soooooooooooooo not having the tatts. I am going to tell them I cannot have them based on religious reasons. Have not thought any further yet about why ....but will come up with a superb reason soon. I will even buy the radiotherapy dept henna to use on me. That is the only marking of my pale wee Scottish skin, they are doing.

Here are pics of my hair taken this week. Seven weeks after chemo and cold capping. It is thinning but it is still on the head. I am continuing to see my niece and nephew and they have no clue I have been ill and have said nothing about hair being any different, so I guess I am still passing it off pretty well. However, I do now go OUTSIDE to brush my hair, as am getting fed up hoovering loose hair up afterwards. Hoover is exhausted!

I am going to dazzle my oncologist on Thursday. It's my first meeting with him since starting chemo. I am going for a spray tan, put on summer frock, full Estee Lauder face, and get hair done and roots touched up with my fabulous 'No More Grey' powder (this is fabulous and possibly best thing I have bought in last few months). I am going to have him wonder who I am...geez hope hair does not fall before then.

I have 3 chemos left to do.

Moondust - I am glad I am not the only terrible woman on this site who refuses their meds. But I am so glad I have done this. I feel I have more energy and less difficulties as a result. I have nooooooooooo clue what I am going to do when the Tamoxifen days come...I may need counselling then.

DD

justmetoo

Today is the first day of the rest of my life..... I'm so blessed to have all you ladies posting. I'm 45 yrs old African American and I never thought I would say in my life "I have breast cancer" so many emotions, new challenges and new normals but thanks to all of you I feel I have a voice that someone else understand. I start chemo next Thursday eight rounds and had it not been for this forum I would be loosing my mind. We are all in this together. So forgive any questions I may ask that you feel I should know..... Just wanted to say thanks for posting here... Marie

justmetoo

Nice quote

Heathet

justmetoo - welcome! There is so much love, support and encouragement here! And lots of info. We're all going through so ask away!!

justmetoo

I start chemo on next Thursday first prior to surgery, I'm a high risk BC patient waiting on Genetics test to come back. The plan so far is Chemo first, surgery and radiation therapy followed hopefully by med therapy. Is there anyone else who had Chemo prior to surgery and why is this done first? Seems like everyone else has had surgery first, is there a right or wrong way to approach this?

Anonymous

Justme,

I think chemo is done before surgery if they are trying to reduce the size of the tumour. Is your tumour a large one? If so, then they may think it is better to reduce it's size with chemo first then remove what is left in a breast conserving operation. So it might be if they are trying to attempt a lumpectomy rather than mastectomy.

Dolly

justmetoo

Dear boobsbgone

I'm starting chemo Thursday, I'm a pharmaceutical rep by trade and I deliver clinical outcomes to Endocrinolgist all day long. Who ever responded to you explaing changing the treatment plan changes outcomes was spot on. Just think 3 more times and done, if you stop now you will kick yourself later. For the best outcome you have to follow the algorithm put in place that's been proven. It sucks but you will be glad after the 3 more rounds. You can do this, I'm really envious of you because I have 8 rounds vs six. I will trade with you any day....keep your head up it will get better. Counting down 3 with you

justmetoo

Do we have a Facebook account

Anonymous

Justme,

Yes we do. Pepper is the lady in charge of it.

D

Anonymous

Boobsbegone,

Under no circumstances do you stop your chemo. Do you hear? You must continue on with this treatment right to the very end. Otherwise, you will be sitting maybe 6 months or a year or even two years down the line wishing that you had kept going with it.

You need to accept that this treatment is THE hardest treatment for any patient to endure, except for maybe having a leg or arm removed....It is hard because it is toxins going into your system. Lovely, beautiful toxins that are messing with any cancer cells in your body right now. These toxins are not the enemy...THAT bloody cancer is. Don't ditch your best pal at this stage. Stay loyal to her...she has been fighting for you these last few weeks. Keep taking it. It works. And instead of being so unhappy, focus on positives. Focus on the fact that you WILL get better and that every chemo is closer to the end goal. OK we don;t like vomiting or staying awake, or having nosebleeds or UTIs, but they are all clear signs that the cancer is being attacked and shot down.

I am dreading my next chemo, as my last infusion was not pleasant and I got the shakes during them and cried a lot....but I know I am going back. It is not even an option to not go back...WHY??? Well let me tell you why, because I love my beautiful life, my amazing family, my cute wee cottage in Scotland. I love baking, laughing at comedy shows, drinking fresh orange first thing in the morning. I love going out with my friends, I love singing, I love reading the newspaper. I love thunderstorms, love snowy nights and I love Christmas. I love life! And so do you! So that being said, you cannot stop treatment. Go by what your docs tell you. They are clever wee things and no what they are telling you, is the best advice possible.

Tomorrow do a nice thing for yourself. Go do something that makes you happy. If not able to leave the house then even just watch a lovely TV show. I love Frasier....and Gilmore Girls.

DD

Moondust

Dolly, I had the rads before chemo! That is not the usual order, but I had already started rads when I decided that my MO was way off base about me not needing chemo. I told the RO after four rads (out of 30) that I wanted chemo, and he said no problem to do chemo after I was done with rads. So that's how it happened for me. But usually I think you get some time off after chemo before you start rads. I can't believe how fabulous your hair looks (and the rest of you, too!)

Marie, please fill out your profile and make it Public so we can see your Dx and treatments. What is your tumor type? If you are HER2+, it is common to get chemo first, because many HER2+ women have a fabulous response to the herceptin and perjeta. Sometimes the tumor disappears.

Today I am the most tired I have felt through all this. My sleep was very poor last night. What I refer to as the "neighbors" - they are almost half a mile from us across flat farmland - for some reason decided to fire up their loud outdoor speakers before 6:30 am and play Mexican mariachi music at top volume. That was just as I had gone back to sleep after a cat woke me up. Needless to say, no more sleep for me! Ay, ay, ay, ay!! as the song went.

The only other new SE for me is a metallic taste. It started when I ate watermelon.

If I can get some sleep tonight, I hope my energy will pick up tomorrow.

boobsBgone

Thank you all for the kick in the butt to keep me on track.

Here are my positives: I love my life, I love where I am in life (except BC) though it did lead me to all of you; I love my animals and all the animals around me; I love my family and friends; I love Halloween a bit more than Christmas; I love movies and riding with my hubby. I love summer weather, rainstorms and running in puddles. Slippers and flannel PJs are my favorite thing to hang out in. 80s music - so into that for sure and laugh when hubby wants to change it (he likes metal) and I love chocolate ice cream smothered in Hershey's chocolate syrup (which when i'm done, I am having an XL serving).

my new thing will be posting my positives, I think I need that to keep me on track! felt a bit better today, but nauseous most of the day. will turn in for the night soon.

justmetoo: welcome and so glad you are sharing with us. I have chemo first, then surgery (DMX) then radiation and it is to shrink the size first before sx. good luck to you.

may you all sleep well and feel energized.

Cody3110

Good morning all. I don't check in here very often anymore as I find that Facebook is much easier to use.

Boobsbgone, you can do it. Stay strong. We are here for you.

Welcome justmetoo.

Moondust, did the metallic taste go away?

Moondust

Hi Cody! The metallic taste is still there but not as bad. I am able to ignore it mostly. But if I eat watermelon, it gets stronger! My husband volunteered to eat all the watermelon so I wouldn't have to suffer I'm feeling less tired today after a good night's sleep. But this heat is terrible -- 109 today (that's 42.8 C for Dolly). The cooler is keeping the house at 87 right now and I'm wearing a wet t-shirt. It helps a lot!

JustMeToo, if you PM me your email, I may be able to add you to the FB group, or Pepper can.

Justwannabeme

Hi, I'm Barb, and would like to introduce myself. I am 63 years old. I was first misdiagnosed in January 2016, then correctly diagnosed in February 2016 as follows:

Left breast only

<1cm invasive tumor, ER + (99.5) PR+ (10.), and HER 2 negative; Grade 3;0/2 lymph nodes; plus 5 cm DCIS; Stage IB;

Had double mastectomy and DIEP flap reconstruction on March 30. Beginning of May, was told my oncotype was 31%(because of the aggressiveness of my cells), could reduce to 21% with hormonal blocking drugs and to 12% with added chemo - so - not a lot of choices.

I started TC chemo in mid-May and have had a horrendous time with it - over 28 continual side effects so far. My doc originally wanted to do 6 cycles but it will now be 4 because of my very adverse reactions. Candidly, my top oncologist from MD Anderson is a bit mystified by me - but I do think she's great and trying everything she can. It's my body that's the problem. The first cycle I had 100% chemo dosage and 100% Neulasta. 2nd chemo infusion she cut chemo dosage to 85% and to 50% Neulasta. Third dosage, which was 3.5 weeks ago, she cut chemo to 80% dosage and took me off the Neulasta. ( 9 days later I ended up in the hospital for 5 days with severe Neutropenia (I only had 40 neutrophils!) She decided to delay my fourth and final chemo,(which will be again at 80% plus 100% Neulasta) which was supposed to be last Thursday, because I am still running low grade fevers and am extremely weak. We are scheduled for this Thursday but I am still freaking out because I've been sick now for almost ten weeks. I had to abandon my consulting business and basically have been unable to function since starting TC My poor husband is so drained, having to take care of me, the house, and his job. I am so afraid how long it will be before I can start to even resemble myself again- forget the hair loss, I'm dealing with that - I just don't want to feel so sick all the time. And I'm supposed to start Aromasin immediately following the end of chemo, which also has me scared to death based on how I've handled the chemo and Neulasta (lots of bone, muscle, and joint pain continually - nothing helps.)

Have any of you had this bad an experience and come out of TC chemo fairly quickly and feeling "normal?" I need some light at the end of this crazy dark tunnel:)

Moderators

Barb-

Welcome to our community! We hope you find the support and advice you're looking for here. We're so sorry you've had such a rough go of it with your treatment; it can affect people in so many different ways. Hopefully some of our members will chime in soon with some insight!

The Mods

lilyp6

Hi Barb, Just wanted to say hi and welcome. It sounds like you've really had a tough time. I can't speak to this, as I am still in the chemo stage, but I'm hoping someone here can answer your question about feeling normal. (And if not here in this thread, maybe in one whose members started treatment earlier).

Justwannabeme

Thanks, Lilyp6, I can't believe it took me this long to find this blog. I've just read most of the entries and they certainly have helped, especially from those folks who have just gotten their third infusion like me. My oncologist keeps telling me to stop looking ahead. But I've always been a planner; so it's hard not to!:) For now, I think I just have to get through infusion 4 on Thursday and the gazillion side effects. I just wish I felt stronger going into it. But like all of you, I have a lot of great things in my life to be thankful for: my incredible husband, my fabulous two sons who were just here for 6 days, my sister who calls every day and visits as often as she can, and a tremendous groupdof wonderfully supportive friends. But every once in a while, like today, I get a little blue. I'm sure tomorrow I'll feel better. My hats go off to all the amazing ladies I've now connected with here: you are all fabulous and courageous, whether you know it or not! And I look forward to sharing wit you and learning from all of you!

Little-Red-Corvette1

Hi All, Welcome Justmetoo! I am having my second treatment tomorrow. I've had a lumpectomy left first. Tumor was 3.5. BoobsBgone sorry you feel so crummy. It's ok sometimes as long as you get back in there. Moondust glad your family is so supportive, stay cool, and boo on the watermelon. Welcome Barb sorry you have to go through this. DollyD you look great as usual. You will knock your MOs eyes out! LilyP6 how are your SE's? I have AC expect my hair to go the end of the week. Is it true it grows back on Taxol? I'll have to ask my MO. Everyone have a peaceful night

labscientistmom

bbbb: I ordered L-glutamine on Target.com or CVS.com as a powder. It has a little scoop that is 6mg, I take that twice a day in a drink of some kind. I have a better handle on my gut since I started taking it, but I am not sure if its that or eating fiber and fruit and whole grains. I read a couple studies that seem to indicate some chemo support besides the neuropathy. hope this helps, A

labscientistmom

Just me too: Welcome, glad you are sharing the love with us, even tho its a bummer for all of us to be here. Your presurgery chemo, the neoadjuvant treatment is a new standard of care to show response to chemo by the tumor hopefully to better reflect on the less likelyhood of reoccurance. You can look up the studies on it, docs have lots to say about it. I had my surgery quick after diagnosis, but I think I didn't meet the size criteria for shrinkage, cause my invasive tumor was less than 2 cm. I can see the value of chemo before surgery to show actual evidence of cancer cell death in the cut out part. Hope that makes sense, got a bit of chemobrain happening. ((hugs)) A