October 2013 Chemotherapy

travlmom

Kellee - good luck with your port. 

Suzan - I just had mine put in today - I was the last appointment and was starving to death!  Mine also goes up my neck.  She was not able to go across my chest.  I am really bummed by that fact.  I can definately feel the tube in my neck and it is not comfortable.  I really hope that it settles down and I do not always feel it.  I wonder how sleeping will be tonight.  Port on the right and still not comfy sleeping on my left side from the lumpectomy. 

On a positve note, I came home and my 31 order arrived and my etsy purchase (scarf and extensions).  Now I am off to take a pain pill and climb in bed. 

Praying for comfort for everyone.

SpecialK

wrenn - if it makes you feel any better I did not start chemo until 14 weeks post-BMX due to so many additional surgeries for non-healing skin necrosis. 

jennh8 - it is not as rare as you think - the number of patients who are given Taxotere and have permanent hair loss may be as high as 6%.  There is a thread on BCO devoted to it, and I am not trying to scare you but it is important that you fully understand the risk.  That said, I was aware of this before starting and asked my onc about it - he said in his 15 years he has only seen it once. 

Jaybird26

Travlmom,

My port was also placed on my neck left side. My lumpectomy was on the right. It took me six days to feel comfortable. Can't feel or see the tube on my neck anymore. Had my first chemo on Wednesday with no port issues. I am hoping the same for you. Janet

wrenn

Special K,  You have no idea how much these messages mean. I really was feeling like a freak of nature so to hear you waited that long is reassuring. Thank you so much.  I have a feeling I am going to have to have surgery to see just what is going on and to finally repair it. It is good to know chemo will still be an option.

JennH8, I am to have the same chemo and won't have a port.

SpecialK

wrenn - Oh, so glad I could reassure you!  I am not sure I have encountered anyone who had as long a delay as I did, and I hope that you can get started soon, but try not to fret.  I don't remember where I posted it but the optimal outside of the envelope is 12 weeks - there are clinical studies to back that up.  Of course, 8 weeks is preferable, but can't always be done.  Do you have a plan for new surgery?

wrenn

SpecialK, I think they are pushing it because I am triple negative. I'm not sure if that makes a difference regarding timing. I am seeing the surgeon who is treating the infection next week and I am not sure what the plan will be or whether they are just expecting this infection to clear up. The nurse said it would take quite a while for the hole to heal over but the infection might be resolved. I finish antibiotics on Sunday and my internist thinks to start chemo that soon after would compromise the healing.  He wasn't sure the oncologist would go along with waiting so I am just waiting to see what the decision will be.  Thanks again for your support. It makes a huge difference.

mc_in_nc

Jenn - I am on the exact same regimen.  I started on Sept. 17th and have second round on Oct 8th.  I did not receive a port and so far so good.  I'm also using the Dignicap to help reduce hair loss.

Good luck,

SpecialK

wrenn - I am guessing that the trip neg aspect of your cancer is what is driving the oncological need to start chemo - I was in a similar boat with trip pos.  The trifecta of surgery/chemo/rads is the arsenal with which TNBC neg is treated, and unfortunately right now there are no other viable treatments, so chemo is a big part of what you need.  Chemo definitely can affect healing but I wonder if they will just risk it if they feel sure that the infection is under control.  So much of this treatment is a crapshoot, but take some comfort that your tumor was smaller and your nodes negative, and there is every possibility that surgery removed all of the cancer you had.  I will be keeping my fingers crossed that a good solution can be reached that allows you to heal and still receive treatment in a timely fashion.

wrenn

Thanks SpecialK, I still do believe the outcome will be good.  Thanks again for your help. xo

sebaroni

Jenn - My friend that finished her trreatment today was on the same regimen with no port. She had super shallow veins and it was always a struggle to get in the IV. But, then again, it was only four times. The outcome was worth the discomfort. It is certainly doable.

Travlmom and Jaybird - I sleep on my stomach and the port doesn't bother me anymore, but it is on my left side right where the seat belt goes when I drive, which is annoying. It gets less noticeable as time goes by, nonetheless, I get it out on Wednesday and I can't wait.

Kiko

Hi seborani !

I am back after first chemo shot !

I have kept it in mind and you were so right it really gives very bad nausea !

They gave me Ativan shot that kept me away from all that worst feeling . Well I did start using biotin and soft brush along with keeping moisturizer now and then.

Yesterday was real nightmare but today m feeling better though had neulasta shot !

Will keep you updated and looking forward for more and more golden suggestions from you guys !

Huggs and GOD bless you all.

JenSF

Hi everyone, I will start my chemo, most likely TC x 4 mid October. I was dx on sept 5. JennH8, we may start in the same week. Same regimen too. I m still awaiting my Oncotype and will meet my MO on Oct 14. We emailed today and she is okay to book me on Oct. I told her that I'm ready to move forward - even if my Oncotype is low (unlikely anyway, as I had grade 2). I wish everyone well. I pray for all of us every other moment. Faith is a must have therapy. Love, Jen

LiLi1964

Wrenn - being Triple Negative is not the "end all" for chemo to start at 8 weeks post-op.  I had the same concern and my MO reassured me that if other issues are needing to be dealt with, they must be dealt with before chemo begins.  And there is no need to worry that going outside this arbitrary 8 week time frame will make chemo less effective.  And I had node involvement (and may have more that was missed - I'll find out of Wed when they remove more) - so please don't let your mind set on that time period.

You've had a lot of issues since surgery.  This last was a doozy and I believe the medical professionals want a good deal of healing before starting chemo - for your best outcome.  It's hard, I know, but try to put that 8 week time frame out of your mind and concentrate on just healing (and I know that has to be hard too since it likely seems to you that you've been "healing" forever!).

Please take care of what needs care right now.  Everything will fall into place at the right time.

Keeping you in my prayers,

Lisa

TeamKim

JennH8 - I start TC x4 in a week, and no port. I have found great info on the TC thread on these boards (ignore the date in the start of the thread, it is currently active)



Wrenn -- I so feel for you with all that you have gone through. I waited 6 weeks post surgery to find out whether I would be having chemo because the Mammaprint test took so long to come back. By the time my chemo starts next week, it will be about 10 weeks. As SpecialK said, you buy some time with clean margins and nodes -- get that infection cleared up so you are ready to face the next hurdle!



So glad to read posts from all who had treatments this week -- cross another one off the calendar! Sending positive, calm thoughts and ((((HUGS)))) to you all.



Someone on one of the threads I have read suggested setting up reward markers for yourself -- something to look forward to. In the short term, I made 4 paper refrigerator magnets with the dates of my 4 infusions on them (in the shape of big girl pants lol) and I plan to destroy them one by one when each treatment is over. Planning to celebrate the end of SEs each time with a dinner at a favorite restaurant. Chemo will be over in time for Christmas, and Santa is bringing me gift cards each treatment to enjoy those after Christmas sales. Whatever it takes to keep putting one foot in front of the other, my friends!

lgkgde13

Just checking in...3 days post first treatment if AC. I took the claritan yesterday and oddly enough I wheezed slightly. I was so wiped yesterday and last night. My MO called and she told me not to take the claritan. She wants to see what my counts look like next week but they may not be able to give me Neulasta again bc of my rxn and may need to switch me to every 3 wks chemo rather than dose dense every 2 wks....feeling frustrated. Honestly didn't expect to feel this wiped after first treatment. Sorry to vent

Macy187833

Hi October Ladies! I hope everyone is doing well. This thread and these boards have given me so much information. I start chemo next week and I have a list of questions for my oncologist (prompted by what I have read here) so knowledge is power. What I especially find helpful is what people post about what their oncs tell them. It is really helpful to compare notes, so to speak.

I'm mostly confused reeading here about all the shots they give you beforehand. What do they give you for nausea? What is the purpose of steroids? Why benadryl and/or claritin? So confusing!So, I have those written down and I will see what my doctor says. Apparently, I have a class with chemo nurses that explains this type of thing. 

I am getting my port and chemo all on the same day next week--same afternoon in fact! It should be a fun day. My cancer center is some distance away and they are trying to make it easier for me. I will have my pain meds ready; I still have a bunch left over from surgery. 

Scary stuff. Sometimes I just get a feeling of absolute terror that comes over me. Not so much from the chemo but from all the scary stories. How do I know that all this will even work for me? (another question for my onc, which I know they can't truly answer)

SpecialK

macy - they will most likely access your port when they put it in, leave you accessed so it will not be uncomfortable for you, then you can get chemo.  Definitely ask if this is the plan - it is far less painful for them to access the port when you are numbed or still sleepy, then for the nurses to do it right before chemo.  You may be pretty sore for a few days so make sure that is addressed with pain meds.  They don't actually give you shots, they give you the pre-med medication by IV through your port.  You are given Benadryl to keep you from having an allergic reaction, steroids are to help with nausea, and to help with inflammation from the chemo drugs, Claritin (you would take that yourself the next day) is taken to help with potential bone pain caused from Neulasta.  Neulasta is not given by all oncologists, some give it automatically (mine did) and some wait to see if your counts will maintain on their own - this is both for cost savings, as Neulasta is expensive, and also to avoid unnecessary side effects if you don't happen to need the drug because your white count is doing OK.  For nausea - you are usually given Emend or Aloxi by IV before chemo starts, then given any one of a number of anti-emetic drugs (Zofran, more Emend, Kytril, Compazine or Ativan) to take at home.  My instructions were to start with anti-emetics the evening that I got home from chemo, then to take them at regular intervals for 72 hours, or as long as I had nausea.

SchoolCounselor

Hi Ladies.

I'm new. Was just told by my team that I needed chemo. I will be getting Taxotare. I was reading a lot and have already got a lot if information from you. No questions yet, just wanted to say hi.

wrenn

Welcome schoolcounselor. You have come to the right place for information and support. These are very caring and sharing women here. Ask away if anything comes up for you and best wishes on your journey.

Pam358

Welcome JenSF and School Counselor!

LGK - sorry you feel so wiped out, maybe the extra drug reaction took a little bit more out of your system than you planned. It's interesting that you were wheezing again after the second dose of claritin. I hope your counts stay hight and you won't have to deal with changing your chemo plan.

Someone mentioned the seatbelt issue - I keep a fleece jacket in the car and use that between me and the seatbelt whether driving or riding and it's way more comfortable.

Someone gave me a little book to read titled "There's no place like HOPE" A guide to beating cancer in mind-sized bites. by Vickie Girard. They are just inspiring little tidbits regarding many of the topics we all talk about. It's an easy read because each entry is just a few sentences.

Excerpts - 1)Even while resting, the battle inside your body is going on, cell by cell. Sometimes just let the body rest so the cells can concentrate on only one job at a time. 2) Regarding Dr's office - Remember, your tumors didn't walk into that office alone. I once told a doctor that unless he could find a way for me to leave my tumors on the examining table while I went shopping, he had to treat all of me, that I was a package deal - mind, body and soul. 3) Regarding hair loss - The fear of losing your hair, along with actually losing it, is truly worse than having it gone. I would've never believed it, but it's true. 4) Yes, yes, yes we've heard it comes back better than before, but you seem to be missing the point. In order for it to come back better than before we first have to lose it. 5) Regarding nighttime - Yes, I realize that everyone experiences nighttime every 24 hours, but not with the same intensity or restlessness as cancer patients. Nighttime blues or frights are a very common and understandable side effect of the illness and treatment. Again, I write the following to let you know that you are not alone. 6) Am I the only one in the whole world awake? With my thoughts screaming like this, how could anyone around me possibly be asleep.

Macy187833

Thank you, SpecialK, for writing that all out and explaining it. It really helps me understand a lot more. I'm sure my "chemo class" that I have the same day as my first chemo will explain a lot of this stuff, but it is scary to have to wait until I'm just a few hours away from my first infusion to learn about all this. Thanks again!

SpecialK

macy - if you think of any other questions don't hesitate to ask! I know it is hard to wait for this - I can say that, for me, the anticipation was worse than the event though!

MsJean63

Here it is my first post. I'm scheduled to start chemo on 10/9. I just don't know what type I should get. My choices are AC x 4 + T x12 or TC x4. My doctor left it up to me. I'm making myself crazy researching. My surgeon didn't initially do the Oncotype because I had three nodes, but I insisted and it came back 14. I also insisted on a PET which came back negative. My muga was 50. I'm getting a port on 10/8. I told myself no more research for the weekend, yet here I am at 1:30am. Is there anyone else out there with my DX and made a decision about what type of chemo?

Kellee318

MsJean...I had a smaller (about 1.5 cm) IDC Grade 2 also. They only took two nodes and they were both positive. I wasn't given a choice about what kind of chemo. I met with two different medical oncologists and two different centers and both agreed that AC + T was the way to treat me. I am glad I wasn't given that decision to make...there are enough things to worry about with everything else we have to deal with. I hope you can make the best decision for yourself and are comfortable with whichever treatment plan you choose.

I'm getting my port on Wednesday and having my first treatment the same day.

Welcome to this group...we're happy you're here but sorry you need to be.

Jaybird26

Good morning Ladies,

I am 3 days past first AC and must say not to bad with the side effects. I do get a little nausea every morning but the zofran takes care of that. Still slight headache MO says only Tylenol but doesn't seem to help. Definitely constipated even though I am taking stool softners and drinking more than a gallon of water a day. Had neulasta shot and no pain. So over all I think I am doing ok. Wondering if SE are cummulative? I am working every day and trying not to concentrate on this unfortunate situation all day. I give myself some time each day to go on the boards, read my books, and feel sorry for myself but then I try to let it go. I am hoping that mind over matter will help me get through this. Next weekend I am having my Bday/ head shaving party. That will be rough. I will try to make light of it since I have a young son. I definitely don't want to wake up with hair on my pillow. MO states hair loss is approximately day 15-17. So for my 40th I will go to my hairdresser with loved ones and take control of that situation. I am hoping the kids get a kick out of giving me a crazy hair cut. I hope everyone has a great weekend. Ja

oconnor2450

Hi October Chemo Queens! I had my 1st treatment in Boston yesterday. A very loooong day. ( it's a four hr dr one way) We were there about 7 hours... mind you, I live far away so when I get there, they have to draw blood and check everything. Had a little trouble accessing veins...I thought I was the picture of calm and composure...however they gave me an Ativan and said relax. I guess my veins were nervous... I fell into bed,so grateful.

I got all three drugs. Abraxane, Perjeta, Herceptin, with an observation period after each. No problems! I drank a ton of water and continue to do so today. Day 1...Im achy, but nothing to note. I hope it continues. I'm back there next Friday just for the Abraxane.

Im thinking the first time is the most anxiety provoking because you are embarking on the the unknown. I will not be so nervous next Friday. I met such nice people and everyone was so kind.

Sending out huge hugs and good wishes to all starting and fortitude & strength for those of us that have begun:)

peanutsmom13

Hi everyone. Had 1st chemo on 9/16, hair loss started 9/28. Now I can confirm why I never wanted dogs in my house. OH THE HAIR ALL OVER THE PLACE!!! Hubby & I went hat shopping last night. Tried tying scarves (failed) don't like the look anyway. Too vain to go bald. So hats it will be. Can anyone enlighten me about the sensitivity of my scalp. Sort of reminds me of when I was a little girl with long hair & my mom would brush and brush and brush and brush then put my hair in a tight ponytail. When I removed the rubberband my scalp would feel sensitive for a bit. Can I smooth lotion on my head? Would that help with sensitivity? I get my next round this Monday 10/7.

LiLi1964

peanutsmom - I've read a lot of this issue and sadly, I've read there is nothing much you can do about scalp sensitivity except that it is best to get completely shaved to lessen the sensitivity.

Sorry, might not be what you wanted to hear but I've really read a bit on this. I, too, have stocked up on hats. I have scarves as well but my arms tire already (and I have not yet started chemo - my first will be 10/10)I can only imagine how difficult it will be to tie these AFTER chemo fatigue sets in. I have a wig but don't think I'll be wearing it too often because of all I've read about scalp sensitivity. All in all - I think my hats will be getting more use than anything else.

Take care and good luck on Monday!

SpecialK

I found that not shaving down to totally bald was better, my husband shaved with a 1/2 inch guard on the clippers. Once the hair was gone the sensitivity went away. I did not wear scarves or hats out of the house, only went out with a wig on and did not have issues with it other than it was hot and a bit itchy - I live in Florida, so it is always hot here. I had very long hair - almost down to my waist and cut the hair off in 8" ponytails prior to chemo and had a hairpiece made from it by these folks: www.hatswithhair.com It was the best money I spent - they can also make these "underhair" pieces with human or synthetic hair they have in stock. It was very comfortable and I wore ball caps or cute fedoras, but it was much more comfortable and cooler, even with a hat.

sebaroni

MsJean - I had the 4A/C and and then 4T with one week in between. Several women I know are getting the 12 T at once a week. I think their side effects are worse than mine were. If you are healthy enough to do the dose dense bi-weekly course, go for it. The Taxol side effects are 100% easier to take than the A/C. You will be glad it's over sooner.

The A/C wiped me out for a couple of days. But slowly got better and I was fine by the time the next treatment date came around.. I refused the steroids during that course, as I am not a nausea person, and it was more important for me to sleep well. The effects of are chemotherapy cumulative. Although, I found treatment number three to be the worst. Remember, though ,all the meds are calculated to your disease specifications, so one person's seemingly identical treatment may not be the case.

As for scalp issues, go ahead and put lotion on your scalp if it helps. It is just skin, after all. I varied between scarfs and hats, but now that I am almost a month post-final-chemo, I am over it. Unless my head is cold, it is bald. I carry a hat now, just for warmth. Do whatever makes you comfortable, you are going to be bald for a long time. I am hoping to have a head of (very short) hair by my birthday in April and I lost it the first week of June. For those of you not there yet, the follicles will stop growing after the first treatment and the hair that remains on your head will fall out by day 14. It will then stay dormant until you finish. I have a thick layer of peach fuzz (of indeterminate color) right now.

It seems overwhelming at times, I understand that all too well. But I am here to say, there will be a time when it is all over. Keep looking toward the future, it will get here.