Starting Chemo April 2016
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sending you lots of encouragement. I'm also an April 2015 groupie... We got your back, ladies!
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I just found out today that I will be starting chemo April 7. Originally I was planning for surgery and then chemo BUT....things have changed. My surgeon and medical oncologist feel that doing chemotherapy first will give me a better outcome. I am 39 years old and have IDC, grade 3. The Drs are thinking stage II but won't know for sure until after my PET scan next week. I am an infusion RN so my experience has been scary from the stand point that I know (and jump to)worst case scenarios. I am working to stay positive and take each day (sometimes hour) as it comes.
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LacrosseMom, your story sounds similar to mine. I'm 38 and have bilateral IDC & DCIS (grade 2 & 3). Was planning on surgery next month before chemo and/or radiation but a recent MRI indicates the cancer is more extensive than they'd originally believed. I have an appt with an MO tomorrow to discuss options and possibly consider chemo on the front end. So, I may be joining this group....
Hugs and prayers to you and Numb.
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Hi Lacrossemom,
Welcome to our warm and caring community! We're glad to see you found this support thread to help you through chemo and beyond.
Taking care of your body and mind is what's so important right now.
Here's some information to help you before and after chemo and surgery:
Important Information for newbies about to start Chemo
Tips and shopping list for getting through Chemo
Shopping List/Packing/To-do for getting through Surgery
We hope this helps!
Keep us updated on your progress,
(The Mods)
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Hey guys I also diagnosed with IDC having my surgery April 12 then from their I will know the stage and what the treatment like I'm so scared right now and nervous.
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Hi everyone! Count me in! I don't know how I missed seeing this board...been needing ya'll. Thanks everyone for sharing your encouraging stories. I'm up for Round 1 April 14th.
I'm struggling with an issue about NOT wanting to tell my supervisor. Part of me would like to keep this private at work. I've got 6 rounds of TCH once every 6 weeks and the 11rounds of just H. I'm also planing on trying the cold caps to keep most of my hair.
Like others, I just don't know how sick I'll get or not get! Don't know how much time to take off for my first round...newer to my job, past the probation period but not a lot of leave.
Stressed out max.
Annie
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Hi brandford37, I have had surgery and really waiting for it is far more scary than when you actually have it. It is a very simple operation and sometimes just a day procedure. Mine was overnight just because I didn't have the surgery until 6.00 p.m. and it was too late to go home after it. I wish you the best of luck and don't be scared. of course I was scared too but I can now say that it is definitely doable.
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I've heard that it is the period prior to either the surgery or this wait for starting chemo that is the worst part of this. I have had a lot of women tell me or write about how once their "IN" their treatment, they feel better even though they may not feel good all the time. I have developed a friendship with a woman who has the same pathology as me and she said that she was reflecting on her journey - asked herself what was worst part of it all - the drains and the BMX, the chemo and mouth sores, fatigue...and her conclusions was absolutely the ANXIETY.
Mine has been so bad that I am left without the ability to sleep and having major anxiety and meltdowns at work. So I finally surrendered and talked to my regular doctor. I started on an antidepressant yesterday and I have a take as needed works pretty quickly anxiety med. I took one today when i found myself at work thinking about chemo and telling my boss and my heart thudding out of my chest, my body churning with anxiety. Later, I felt happy and normal and found myself dancing a little bit to a song on the radio - it was like taking the anxiety down freed my normal state. She also gave me a couple of medicines to try so I can sleep. Last night's worked well - I slept for a glorious 6 hours without cancer thoughts or worries.
I so appreciate you ladies from Chemo April 2015! Thank you for sharing so much. I look forward to gloming on to you for support. I'm just so afraid and resistant to feeling sick for such a long period of time. Scared I guess.
Annie
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I did AC every 2 weeks for 4 rounds and Taxotere every 3 weeks for 4 rounds. I did pretty good on AC which is tooted as hard by many. They call "A" the red devil because it's orangy red color. The most problem I had was nausea. Get the rx and take it as rx'd even if you feel ok for the first few days after chemo. Drink lots of fluids. It takes 48-72 hours for chemo to leave your system, you want to get it out asap as chemo stops working an hour after it's given.
Most people on AC lose their hair shortly after the second infusion. Some people just shave it before chemo. I waited until it started coming out in clumps after chemo #2 and shaved it.
Also your taste will change so it'll be important to eat what you can. I popped a good mulit vitamin, vit D since I was low, iron since I was low, and calcium. Vitamin B-12 1000 2 x day helped with neuropathy as that seems to be a problem with Taxol/Taxotere though it wasn't big for me but as soon as I felt it, I popped the pills.
That's the highlights I can think of with my experience. It wasn't too bad. I remember before my first infusion the not knowing but when I saw what it's like, the anxiety lessened. Hope you have a tolerable/good experience. Think positive. It sounds cliche but go in with the attitude you are going to kick ass and don't think otherwise no matter how you may feel in the moment. Your mind is very powerful and can be half the battle, mentally and physically. Best wishes.
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Thanks Artista928, that's great encouragement
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Hi! I'm from the Sept 2015 chemo group, last dose was right after Christmas, doing Herceptin/anastrazole now. Unfortunately I was one of those with lots of side effects, but Finland uses different chemo drugs than the States and that's probably part of it.
Just wanted to encourage anyone who will be getting Taxotere (Docetaxal) to ask for (demand!) cooling gloves and if available also cooling socks during those infusions to prevent/lessen nerve damage. That drug can cause pain and numbness starting at the tips of your fingers and toes. I was only told about that option after my first dose and after the damage was already done. Luckily there was no worsening after I was given cooling gloves and started taking B vitamins (which I learned about from this wonderful site!).
Hair loss CAN hurt --- the scalp gets very sore before anything starts dropping, any hair movement hurts. I got a 1/4 in. buzz cut which stopped the pain. Highly recommend!
Also --- hydrate! hydrate! hydrate! Wash that stuff out of your system the first few days! I kept a water bottle next to me at all times so I could at least sip all the time.
And lastly: I've had several operations during my life, and always get absolutely horrible post-op nausea and vomiting, no matter how many drugs I get, so I was very very scared of nausea from chemo. Well, over the entire course (6 doses, 3 weeks apart) I vomited a tiny bit up a grand total of 2 times --- and one was because the taste of a new soup didn't agree with me. My husband bought a new 10 liter plastic bucket which I lined with plastic garbage bags for easy clean-up --- much less awful than vomiting into the toilette. The anti nausea drugs available these days for chemo are FANTASTIC. I am definitely going to beg for the same ones if I ever need surgery again.
Just remember to take them by the clock, or at the latest, when you start to even think you might be getting sick to your stomach, because it's much easier to prevent nausea than quiet it down once you're bowing to the throne". Ladies, YOU CAN DO THIS!!! Wishing you all strength through you battle. YOU'VE GOT THIS!!!
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Thanks Tessu, lots of good tips there.
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Thanks Tessu and Arista and Numb
I'm going to need the cooling gloves and socks then...where do I get them or find information about them? I'm going to use the Cold Caps too.
Its so great information about getting the chemo cleared out of the body ASAP. I am going to use hot yoga - even if I'm not strong enough to do all the poses, I can try and I can lay down and sweat. Listening to the instructions focuses my mind too. i will drink a ton of water. The idea for garbage liners and bucket is great. Thanks.
A
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Thanks so much for all of the little tips on surviving chemo. I have already asked my MO to write for home IV fluids so I can administer them to myself once home. This is an option that many aren't aware of. I work for a home infusion company so over the years I have taught many chemo patients how to administer IV hydration fluids to themselves at home. Dehydration can make everything symptom wise so much worse!! I am just anxious to get started and stop feeling like every second that goes by, this cancer in my breast is spreading!!
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For Taxotere, I just used ice packs on the palm of my hands and feet. No need to buy anything fancy. The point is to keep it cool. I just rest my hands and feet on them and remove for a bit if it got too cold then back on until Tax was done.
Adriamycin is about 20 minutes. Cytoxin is about 2 hours. So plan accordingly. The place I went to had tvs in each room as well as WiFi. It can be boring if you're there without company or nothing to do,
Check out your center before hand. My place has a fridge full of eats and a freezer where I'd put my ice packs for Taxotere. It takes awhile when you get there with them taking your vitals and getting the order to pharmacy for you chemo so that's why I'd put the ice packs in the freezer and waited to use them until chemo was actually being administered. I've read about some folks centers don't have much of anything to eat or drink and they'd take a cooler/lunch sack.
Sucking on ice chips during chemo especially Taxotere can help keep mouth sores away. I had none.
If your centre doesn't have snacks, don't go in on an empty stomach. Have a light breakfast with no caffeine.
Another thing I thought of is when you read the pinned chemo thread........don't go buy everything or most of everything. I live alone and was going to have basically no help so I prepared for the worst, which = buying things just in case. I have a mini mart in here still of stuff I don't use for this just in case. Have some broth, simple clear soups, ginger tea or ale (ginger is great for nausea) and maybe crackers for the in case for stomach stuff because you have to eat something as well. So those are good if in a case things to have in addition to the rx'd meds given. The rest, see how it goes. Have the supplies you do use regardless stocked but no need to go nuts on it either like I did. I don't need TP, kleenex and paper towel for a year.
Typically you won't know how you react until a day or two after. I don't know anyone who the day of chemo came out feeling like crap. If you are alone, it's easy to go over board like I did.
Also I kept a journal of my symptoms for AC and then Taxotere. I wrote day of chemo feelings and the following days of details like side effects to report to my MO, what I could eat, what actually tasted good- like a diary. Some people get chemo brain and even if you don't, it's easy to go to the MO feeling fine and forgetting that 2 days before you weren't fine---and that should get reported.
I was able to drive myself but in case you're alone and you're concerned, in my area there is what's called Drivers For Survivors where volunteers come pick you up and take you to and from your medical appt, surgery etc, not just chemo. It just has to be a medical appt. So if there's a concern, check into it. I think the cancer society has info on this in general, or ask you centre or MO. I had no clue until I was handed a pamphlet at my chemo class.
If you have a port, it can be a little bite when the needle is inserted. I got an rx for Emla cream or the generic which is simply lidocaine and prilocaine. Apply a quarter size or a little larger sized glob over it (do not rub in) and put a saran wrap lightly over it so it doesn't spread and get on your clothes. Apply 2 hours prior to chemo appt. It helps take the sting out of inserting the needle. At times I didn't feel anything. I did this too for filling my TEs. I'd measure up from nipple area and over to the small bandage they placed the first time and put the gob. I wrote down the "directions" to each side and did it 2 hours prior to fills as that sucker to me hurt more than accessing port.
That's all I can think of now in addition to what I wrote above. If something else hits, I'll share. You'll get through it. I live alone with no help and thought no way and stocked up on stuff like it was a war going on. My regret. I've been giving away stuff that I'll never use so some wasted money to add to this journey..
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Hi everyone,
Tomorrow is my second appointment with my MO. JEEZ I get anxiety just driving up to the Cancer Center...still feels surreal. I've been working on a list of questions. The last appointment I had an anxiety attack waiting and I took a Lorazepam and then didn't remember a lot of the appointment. At that time I felt a lot of resistance to chemo and to him. Its just opposite of how I've tried to live my life - being in the present and not future tripping. Now, I have to sacrifice the present for a longer future...whatever, I'll take the deal!
Any ideas for questions I should ask him? I'm in for 6 rounds of TCH and 11 rounds of H (Herceptin).
Here's my list:
I'm really sick with a sinus infection and on antibiotics - will this delay my start?
Whats the different between Taxol and Taxatere?
Why the Carboplatin? (A woman on the boards told me they dropped the Carboplatin because she is not BRAC...since I'm not, can we drop that too)
Perjeta - why is he not putting that into my mix? Its FDA approved for adjuvant with tumors > 2.0 and here say is that its a breakthrough for HER2+
Can I do a Taxol/Herceptin trial through him? (There's one with great results going on at a major cancer center in Seattle).
What is "Light dose" and can I try that first?
What is slow vs fast infusion and can we go slow first?
Why don't they test for reactions to the pre-meds like the steroids and the benadryl before the big show?
My week: Monday the MO. Tuesday I am in for the echo-cardiogram. Friday I conference with my Naturopath. Meanwhile we are making an offer on a house, I work FT all week and I'm meeting my new foster grandchild on Saturday.
Thanks -
Annie
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I will say one thing. If you are really sick and with an infection on top, then he shouldn't start you on chemo until you are better. With chemo your immune system is going to be compromised. I had infection before starting chemo and it delayed my chemo until it was cleared up. Yeah that's not ideal but you have to go in healthy or it will be a battle. They do lab work before each chemo session so he'll see your wbc as well.
Is he going to do any scans, like a CT scan beforehand to get a baseline of how things look?
Taxol and Taxotere are essentially the same. The only thing that I found in my case and in the case of the sisters that were in chemo the same time as me is Taxotere seems to be more easily tolerated than Taxol in terms of side effects. My MO told me that when I asked her why not Taxol weekly for 12 weeks. She put me on Taxotere 4 doses every 3 weeks and I hardly had any side effects. Not saying it's the case for everyone but that was her experience in her large practice. Many ladies either couldn't make it to the 12th dose (stopped at 10th or 11th) due to side effects- mostly neuropathy- or had to have doses reduced on the last one or both. Otherwise one isn't better than the other in terms of cancer.
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Artista928, love love love your post - hardly any side effects with Taxotere!?!....I know for sure Thurs if I am doiong Taxotere or Xeloda for a recurrence in axilla. I do want to cold cap and fight to keep my hair or most of it if I can... My onc said either or but was leaning towards Xeloda (scares the shit out of me...why? does he think I'm stage 4? Also I have read that Xeloda only has complete responses is like 20 - 30% wth). I did 4 of Taxol first go around so I know they worry that prior chemos are less effective and Taxotere is considered a cousin of Taxol. But I had neo-adjunct chemo and my tumors didn't shrink on AC but they really shrank on Taxol. I only had 4 so I am hoping this recurrence will still be responsive (?) Xeloda as a pill sounds good but I keep hearing about GI issues, hand foot syndrome crap and it takes longer.
I don't know... I need to call in for refill on my Attivan. I cruised through surgery, breezed through rads (pretty much) , figured out my arimidex so it's minimally bothersome...why not sail through chemo? ha. Good Lord, this disease is crap....crap crap CRAP. I want it gone for good this time!0 -
Hi,
I start TCHP on April 1, 2016 -- no joke.
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Dear Bagger, We wish it WAS a joke. So glad you found us all here though.
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I start my second chemo experience on 4/14/2016. Let's get this party started and kill this cancer!
My first rodeo was dose dense AC every other week followed by 12 weeks of T and then radiation. I'll be honest, for me the effects were cumulative. The first two rounds of AC were ok, the next two defined a new baseline for draining the color from life. I was able to work a job that had little physical labor, but required a great deal of communication and concentration. The T wasn't has hard on me physically, but took a toll emotionally.
There is lots of great information on here about medication for side effects and coping with the change in taste. I'll add what I'm getting ready for this time around.
1. I've bought two pairs of "chemo pants". These are yoga/lounge pants for when I'm just vegging out on the couch. It was really important for me to get up, shower and change out of my pjs everyday.
2. I've got my wig ready, I've ordered a new soft fuzzy cap for sleeping in and I ordered more head beanies and scarves. I donated mine from the last time. I also didn't buy enough different kinds/colors. Also, I now know my wig gets hot sometimes and I already know what I look like bald, so I'm not going to be afraid to go bald at work if I get too hot. My comfort is more important than someone else's thoughts on my head!
3. I'm going to buy a nice backrest/bed pillow for days when I just want to Netflix and really and truly chill!
4. I'm DVRing shows now to watch later.
5. I installed a couple of chemo calendar apps on my iPhone to help me keep track of stuff
6. I'm packing my chemo bag with mints and will remember to breathe with my mouth open when they flush my port with saline!
This time around I'm doing Abraxane (a type of taxol) + a clinical trial med or placebo. I'm hoping this time isn't as harsh.
My treatments will be on Thursday and Fridays. Maybe we can chat as we infuse
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MattieFang!
I'm starting Thursday 4/14/16 for my first Chemo Round 1 TCH + Perjeeta if insurance approves. So I'm in for on-line chat during it. I'll be every 3rd Thursday...what about you?
Dear Bagger!
Oh my gosh, we have the same pathology and the same chemo regime. Let's hook up!
Arista,
Thank you very much! I feel better now about Taxotere. Yay.
Well - I met with my MO today, second meeting with him. He is Dr. Science - National Standards and he actually got upset about my questions which come from our discussion board. I asked about Perjeeta and he agreed it would be good but didn't think my insurance would cover it but agreed to try and he requested it. He said that it was not FDA approved but I had read that it was on the boards. When I asked other questions about trials etc. he said it was like the women were "back seat driving"...I had started out with telling him that I know I'm not an MO but I'm trying to learn and had questions...he said my questions were making us run out of time...jeezzzz...I had heard that for bed side matters he is terrible, but for chemo, he's the best in my city.
I got to see the nice infusion lab and met with two super cool nurses who were very encouraging, like coaches. They appear to not be so keen or hopeful about Cold Caps and wanted me to go see the volunteers up front and the wig bank...ughhhh. No thank you. I'm seeing this young woman I love Saturday and we are going to pick out a wig and then she'll cut and color my hair to match it. THAT sounds fun. So just in case the Cold Caps don't work, I'll be ready.
I stopped procrastinating the blood draw and got that done today (I'm such a big girl). Tomorrow is the echocardiogram.
Well, I will say that I've tried to talk to both my BS and my MO about things I'm learning about on the boards and what the women are saying and neither one of them liked it. I feel like we are part of a grass roots movement. I'm really hoping the Cold Caps work so I can advocate for them to start to offer it or at least allow brochures and information about it. The nurse said they also used to offer cryotherapy but since there is no "science" behind it, they had to stop. I think that is crap. I'd like to put one of these doctors through this and see how it changes them. MUhahahahhahahaha.
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Well now that you know your chemo regimine, find another MO with a good bedside manner. That's great that he may know his stuff but poor bedside manner makes him a so so MO.. Take his plan to someone else to administer. Your MO is who you are going to see forever so to speak on follow ups, so it goes beyond just chemo and scans results. There has to be equal communication and bedside manner care involved.
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Uhohhhhh...The MO was WRONG....Perjeeta is approved by the FDA for my pathology and size tumor...Jeeezzzz. He would have missed this drug if it were not for me learning about it here and asking about it. No wonder he was defensive. What do to...
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Not a question in my mind.........Can him now. Time to find a good MO, one with bedside manners too..
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I fired my first MO after he gave me incorrect information (didn't look at my record to confirm my ER status before laying out the plan, among other things) and told me he didn't have time to answer my questions but that I should trust him. Nope.
You're going to bear the consequences of these decisions. If he can't be asked questions, he is insufficiently patient-centered.
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Hi guys, I 'm delighted to have found your group as I'll also be starting chemo (4 x 3 weeks of AC then 12 weekly doses of Taxol). I have IDC (Stage 2A, grade 3, ER/PR+, HER-) with DCIS. I had an extensive surgery on 19/2 to remove large section of left breast and 4 nodes which were negative thank God! On top of it all I was diagnosed while pregnant and just had my little son a week ago at 38 weeks but he is my driving force!! I have a PET/CT scan on Thursday and get my portacath fitted on 20/4. Then starting AC on 21/4. After chemo I face a double mastectomy, radiotherapy and hormonal therapy.. It was a terrible shock for us as they were sure I only had DCIS but then found 2 masses of IDC.. Now that the chemo is looming its time to gear up for the fight and get as much info as i can. I'm worried about how I'll manage the SE with my baby as I will have almost no family support except for my husband who will have his hands full between work and our 4 year old son..A'way Im so so glad to have found you all and to know I'm not alone!!!
Big hugs,
Mellie
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Hi, I thought I'd post some general information about me for this group.
I'm 51, and, strangely enough, have all female doctors. I liked my breast surgeon, because she listened to me when I said I wanted a mastectomy right away and didn't want to pursue anything less. I had 2 lumps, biggest was 2.2cm, plus DICS cluster at the bottom of my breast really close to the margins. Surgeon said I probably would have ended up with a mastectomy anyway, so that worked out. My MO put me right on TCHP, which seems like the right, and latest, course. I'm sorry if anyone is getting anything less than that. Like we don't have enough going on.
I was on a maintenance dose of Prozac going into this and quickly realized that it wasn't doing the job anymore. My anxiety was really bad and I wasn't sleeping or eating much. I had only had depression before, so this was new. I actually hesitated asking my MO for meds because most docs want to send you to a psychiatrist. My MO gave me a prescription for Effexor (and almost laughed at my hesitation because she deals in far more serious drugs, and found my request trivial) and I'm now taking 75mg. It's working and sleep, food, and mood are all back in line.
I'm going to see if I can do without the Immodium. Web says that up to 80% of Taxotere is excreted through going #2, so I wouldn't want to slow that down. We'll see. Lots of water too.
I hate it when my head is cold, so I'm going to wear a warm hat and just lose the hair. I have sun hats and baseball caps at the ready.
Mellie361 -- keep trying to find some help. Maybe a teenager nearby could take 4 year-old to a park when baby has afternoon nap, so you can nap too. I arranged that way-back-when, and it helped me revive for the rest of the day (and that was without BC).
Anniekaja11 -- Yes, we do have the same same. Sure, let's hook up (don't teenagers use this phrasing for a different purpose?
I'll be reporting my SE since I'm first up on April 1.Big hugs,
Barb
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Hi- I'm new here. I am 47 and was diagnosed about 6 weeks ago. The day before my mastectomy, my genetic testing came back showing I carry the BRCA 2 gene (with no family history!). I ended up having a double mastectomy. I am still recovering and had another surgery yesterday to remove excess fluid and dead tissue. I am stage 2A and had 1 lymph node positive. I am starting chemo 4/25.
Sheri
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