October 2013 Chemotherapy
Comments
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Nicole – Welcome to this thread – chemo is scary, no doubt about it! It’s important to familiarize yourself w/all the side effects, but please remember that each individual is affected differently by these drugs. What’s most important to keep in mind is that cancer is powerful….and powerful drugs are needed to kill it. Try to remember that if/when the side effects you read about get to be a little overwhelming. And there are so many ways to counteract the side effects but you need to make sure you inform your MO right away; they have many tricks up their sleeves and have made chemo much easier to tolerate than it was years ago.
If I might suggest, what I’ve found you don’t get told are things to do beforehand or during chemo to lessen side effects. For instance, chewing ice constricts the blood vessels in the mouth which lessens the ability for the chemo drugs to settle there and results (sometimes) in reducing mouth sores. Nobody said anything about that to me prior to when I was to start chemo, but found it in this forum so be pro-active in that area. There are many suggestions you can find in this forum to do before, and after.
You do have an incredible support group here. It’s a difficult journey, but one we have chosen and everyone here is incredibly encouraging, caring, and ready and willing to listen and commiserate if you just need to vent or a shoulder to cry on.
We can do this! I hope your tests come back w/o any surprises and your chemo starts on schedule. Keep a positive attitude; I’ll give you a quote my husband gave me that seems to have stuck with others….he said this after my surgery and when we were one week out from starting chemo and my anxiety was building. “We are now on a Search and Destroy mission to kill any of those little ***** still lurking in the body”. I know, you can probably tell he’s military, but after a little chuckle I realized what he said was so true and I’ve not forgotten it. It’s helping me keep in mind what this next step is all about, no matter how scary it might be – it’s necessary. The war cannot be won until all the battles are fought – and in the end we all come out the victors!
Hang in there. Any questions or concerns…just post here and someone will be able to help or direct you to a site where you can find solid medical info on the subject. We’re all in this together and together we will beat this disease!
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Hi All,
Just joining you. I finally get my port on Monday (after a long delay from a post-op infection) and supposedly begin my 1st of 4 A/C Wednesday. I was so excited to finally be cleared to move ahead Thursday that I didn't pay much attention to getting a port. Even when the OR nurse called me Friday to go over things, it hadn't sunk into me that yes, this was another surgery. My surgeon only does it under general, so ugh, more cloudy brain.
TeamKim, it looks like we've been moving along the same path through LumpectomyLounge to here. I wish I got to have A/T I stead of A/C, so there's a small thing for you to be grateful for!
I've always loved hats and don't mind wigs, so I'm prepared with an arsenal of 3 wigs, plus a halo and a bunch of hats. My chemo has been delayed for an entire month, so I've had plenty of time to obsess and purchase and plan, although I was mostly very ill from the infection the entire time. Now that my start date is getting close I find my brain cannot stop trying to figure out every small thing I might need to get or do. Ugh. It's just my way of processing stress.
My husband and I went for a walk in the woods yesterday. It was beautiful. I couldn't go far, as I'm weak as a kitten from the infection, but I figure this is about as good as its going to get, so why not get out there? Today we plan to get into San Francisco and stroll around the waterfront. We will take our dogs, two ginormous Newfoundlands. It's a kick to bring them out, the tourists take photos and gush over them as though they were exotic beasts!
I woke up at 5 this morning, too early, so I took some anxiety meds. I wrote my kids an email spelling out what's happening. I hate causing them worry: one is an undergrad, one in grad school, and the other a part-time underemployed recent grad trying to make his way. I feel guilty causing them any more stress than their own lives already generate, however, they are adults and I think should have a general idea of what is happening with me. What's great, as I told them, is that if all goes according to schedule, I should feel decent for Thanksgiving (2 home) and Christmas (all 3). -
Good morning,
My first post here. I'm searching a couple of places to find a home to walk through this challenge. Diagnosed aug 13th xxx-, stage 2b, grade 3, one axil node. I have my team of docs at massy cancer center. I'm not a candidate for a lumpectomy. We are doing pre adjunct chemo adriamycin, cytoxan 4 xs over 2mos, followed by fast track taxol. Surgery will follow, with radiation (probably) and finally reconstruction.
First chemo went well, no nausea or side effects until day three. Took zofran, didn't help. Took compazine this am, still queasy. Any suggestions? Also, the burning in the breast is intensified. Wen can I expect this burning to subside? I feel like the cancer is growing with each ping. -
travlmom- I had my port put in with just a local. You don't have to go under for it. Just ask. The Radiologist actually liked me not going under. He said it is not necessary if you can handle it. It was a 20 minute procedure (I watched the clock) since they don't have to put you to sleep there is no prep time or recovery, and you can leave when done (and drive) I got 3 numbing shots , felt some pressure when they push the port under tissue but other then that, nothing. I talked to the nurse the whole time and it was breeze. The thought of gettijng put under and having to wait 1-2 hrs in recovery drove me insane. Probably since I spent 4 days in the hospital from my BXM and Diep reconstruction! No more hospital stays for me! SO you can do it! I was sore for about 3 days after- sore neck and weird pain down are(probably a nerve) but within a week everything was fine. Good luck and it wasn't a bad procedure at all!!
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PatAlameda and OneFineDay – welcome to you both.
PatAlameda – have you been to the Chemo Thread for shopping list of items? If not, please go there; no need to let your brain keep trying to figure out if you have all you need. Their list is all in one spot, and is very helpful to prepare us for what we may need on hand. Follow this: All Topics → Forum: Chemotherapy - Before, During and After → Topic: More Tips (and a Shopping List) for Getting Through Chemo
Sorry to hear about lingering infection. And delay of chemo. Things look as though they are progressing now and you’re ready to move to your next step. Please don’t feel guilty about causing your children stress; they are old enough and I’m sure they appreciate you keeping them updated. The stress would be, I think, not telling them everything going on in your life – they can handle this. No guilty feelings, OK?
I hope you have a great day at the waterfront with the dogs (and husband, of course!)
OneFineDay – I like your name! I’m happy for you that the SE’s held off at least for 3 days. My chemo start was delayed at the last minute (literally) so I can’t help w/the SE’s you are now dealing with. But there are many ladies who can and I’m sure you’ll hear from them soon. Did you talk to your doc about the burning sensation in your breast intensifying? I think that should be imparted to your doc.
You’ll both find a very supportive group here. It’s a difficult thing we are going thru but having this forum to interact with others going thru the same things at the same time is incredibly helpful. We’re all in this together and we’ll all get thru it together!
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38tooyoung - thanks for the info. I usually tolerate pain pretty well and hope that my BS agrees. Either we are just meeting or she is thinking local since she asked me to come in prior to another appointment an hour later. I will kust load up my meditation cd to my phone and pray. One more question.. is the port placed on the same side or opposite side of the pissed off boob! I am a side sleeper and if it is opposite side - I am going to need a cacoon to sleep in.
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Karlee - sounds good to have a couple of treatments under your belt before you go back to work. From reading the other message boards it seems that the first chemo treatment is the most unpredictable since nobody is sure how your body will react until you actually go through the first one. Then many seem to figure out a plan for their particular side effects. Not that other stuff can't come up, it just sounds like there is less anxiety after you get through a couple. I had my hair cut short in anticipation as well and donated it to locks of love - it felt good that since it has to go anyway that I could do something positive with it. I think it was a way to take a little control over the situation.
Nicole - I think one of the things that helps me about all of the side effects is hearing that not everybody will get all of the side effects - if only we could pick which ones we wanted!
Lisa - Special K's idea of follow up echos if they go with the ACT will probably not be too much of a request since my MO said that was the plan for my ACT chemo anyway without any issues up front. Actually the person who conducted my echo mentioned it as well. He said the first one was longer and the follow-ups will take less time since they have the baseline and are looking just at function during the follow-up.
Welcome Pat, OneFineDay and 38tooyoung - we are glad you found us but sorry you have to join any breast cancer group at all. We can all get through this difficult journey together!
Pat - we went to an event with my sister-in-law and her bulldog and got the attention you mentioned you might receive along the waterfront in SanFrancisco. It was like she was a celebrity and she just loved it! I hope you had a great day and it was uplifting for you too.
OneFineDay - other than the Zofran and Compazine I'm not sure of other ideas. Have you been eating something (saltines?), I know for some that increases their nausea. Maybe it will just take some time to catch up to it. I'm hoping that it goes away. Maybe someone on the Sept thread could help with some advice since they've been going through treatment longer.
Travlmom - as for which side is the port placed it seems to vary. The nurse at my MO office was suggesting I have it on the left side since my surgery was on the right. So when I have Rads that I can keep my port in longer if I need to. But my BS said she wanted it on the right since it is easier to place and therefore less complications and she thought the placement would be OK for rads (we'll see). Another nurse said she thought they were always on the opposite sides. It sounds like another one of those things that "depends". So if you have a preference, voice it and see what happens. I too am a side sleeper so in the end I'm glad the BS put it on the same side as my "pissed off boob" so at least I can sleep on my left side. I think sleep is very important and a good arguement for a left side placement for you.
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ML40 - Wishing you nothing but the best as you start your chemo on Monday!
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Pam - I actually think I've made my decision. As much as I didn't want to research these drugs, I felt after postings w/SpecialK yesterday I had no choice. As you know from my August 2013 Surgeries post, I have a trust issue w/doctors.....and I'm not willing to let this issue remain soley in their hands.
My mother and step-father (obviously he was no blood relation) both died of sudden, massive heart attacks and were both DOA. Nothing anyone could do. Given that Adriamycin can cause damage to the heart muscle, I'm simply not willing to take a chance of having a heart attack (as much as 8 years down the road if Adriamycin is used!). Taxotere is the alternative drug that was mentioned and I'm asking my MO to give me recurrence percentages on that drug like she had w/Adriamycin.
As I discussed this issue w/husband and daughter, we all felt that even if we use a drug that may not be as effective for my particular cancer....and if I do have a recurrence of cancer in say 5 years...at least we have time to attempt to treat it and in 5 years science may have better chemo options available. That seems much more safe than taking a chance w/Adriamycin....and risking sudden death should I, too, have a massive heart attack brought on by chemo.
The whole issue of the right nodes and not knowing if it is lurking cancer....I'm also asking MO how effective Taxotere will be in shrinking/killing that (if it is cancer and not some lingering inflammation). Also asking what she and BS discussed after my US and if their decision is still to not biopsy at this time (I shouldn't have to ask this stuff - someone could have called or emailed me via electronic medical communications!)
I think Cardiologist and MO would INSIST on periodic repeat testing of the heart muscle if I choose that route. However, since I can find no concrete human studies on meds to use to protect the heart against Adriamycin (lots of studies on rats; but I'm no rat!) I don't know that Cardiologist will be able to provide me with any information that will change my mind. I'll keep an open mind but I've seen no human studies that offer comfort (and a lot of conflicting info which is why I didn't want to research any of this in the first place!).
That's what my family and I have decided. We'll see what Cardiologist has to say .....
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I think your decision makes sense. i too am more worried about heart disease than cancer coming back and as you said there may be better chemo drugs in the future. In fact there likely will be. I hope you feel better having made the decision. It is all scary stuff no matter what we decide but a better feeling to have made up your mind and have your family agree. All the best to you.
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Hi Pam -- long time no see! Haha! We have been shadowing each other's journey here -- glad the infection is finally under control and you are ready to move forward. Your walks in the woods and at the wharf seem like great ways to gather your strength for the next battle! My little terrier passed away almost 2 years ago -- I so wish I had him for some canine therapy as I deal with BC treatments! I have promised myself that once I am done with chemo and rads I will find a new pup to adopt. I only have one child and he is on the other coast for college starting this year -- I can relate to what you are saying about weighting them down with the info. On the other hand, I know that he wants to know (but just the facts, Mom) and he never fails to say something positive about how he is so glad there are treatments and that he knows I will do fine. I can almost hear my voice coming back to me as I encouraged him through life's little trials -- it's weirdly effective in propping me up.
One Fine day -- love the name! I haven't started yet, but I have three prescriptions for nausea. MO and onc RN told me they put enough nausea drugs in the infusion to get me through 96 hours or so. Then they said the Zofran first, then Compazine, then Adivan. They also suggested ginger in many forms (cookies, ginger ale) is good for queasiness. I have gotten a bunch of Pedialite Pops to have in the freezer, as I thought the mild taste and the electrolytes would be good. I am sure many of the wise ladies on this board can help as well. Can't help you with the burning -- as others have said, tell your doc. Post surgery I had "zingers" as nerves reconnected, but you haven't had surgery yet, so that's not it -- but biopsies can have that effect as well, so maybe you are healing from that?
LiLi -- that sounds like a very prudent and well-considered decision, and with your whole family involved, you feel the strength of collaboration for the best outcome. I hope a different "cocktail" can be found that will not cause you so much anxiety.
Hugs to all with treatments this week -- may the SEs be minimal! (((Hugs)))
--Kim -
Lisa - it sounds like you and your family have done a lot of decision making in the last couple days. There are so many decisions we have to make and they are so personal. We have to do the best we can and then try our best to be confident in our decisions and not do too much second guessing. I wish you peace with your final decision.
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Hi All! I start chemo on Friday October 4th, really a little apprehensive...oh the power of understatement.
It's a new regime for stage 1, so I have to travel about 4 hours from home ( Maine) Ugh.
Herceptin, Perjeta ( Pertuzumab) and Abraxane... once a week for 12 weeks.
I wish us all fair winds and calm seas!!!
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Welcome Oconnor - we are glad you found us so we can all offer each other support through this journey we didn't ask to be on.
Are you saying "a little apprehensive" might really mean scared, terrified and wanting to stamp your feet and yell "I'm not going"? :-) Sorry to hear about your long trip to get treatment, it's an added hassle. -
I've been coming back and reading here all weekend. Sometimes it helps immensely and sometimes it's extremely overwhelming. I think this morning was the first time that the reality of actually having chemo set in. I sat and cried for a long time. I've cried here and there since my diagnosis and surgery but today was different...I probably sound like a crazy lady saying that!
I sent a text to a brother-in-law (his wife was my husband's youngest sister) to update him on what's going on and he texted back and offered to send me her hats. She passed away last fall after a long battle with first breast and later ovarian cancer. I was so touched that he wants me to have her hats to wear.
My husband fell 12 feet from a roof in May and suffered multiple injuries and spent 4 weeks in the hospital then 2 more in rehab before coming home using a walker and wheelchair. He was doing well but has had a bit of a set back and is having surgery on Tuesday. We just got married on January 1st. People who know about his accident and then hear about my diagnosis just look at us and shake their heads...I've learned not to ask what more I can handle.
Sorry to ramble on...guess I needed somewhere to get things out
I'm thinking of all of you starting your treatments this week.
Kellee
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What a difference a weekend makes! Friday I had overwhelming anxiety and depression about starting on Tuesday but a visit from my sister and new baby along with spending weekend with DH, daughter and stepdaughter helped me overcome it. Tomorrow I will go shopping for supplies on chemo list. My friend even gave me idea to stock up on Rita's water ice which I think would be great in case I won't eat anything else. My stepdaughter (8) did a lemonade stand today bc she wanted to raise money for cancer. She has been talking about it for some time now and thought this weekend was perfect for it
. Hoping for a great week to everyone with no SEs. -
Kellee,
As I read your post it reminded me of the day everything hit me and I couldn't stop crying. I actually went into the shower because I didn't want my son to see me. I can also relate to your other life issues. I was very angry in the beginning. I couldn't believe that there was another curveball being thrown at my head. I can't say that I have accepted it but I am attempting to take it day by day with whatever emotion I have at that time. This sucks for all of us. All we can do is stay positive and strong, be there for each other, and not let this road block consume our lives. I have my fingers crossed that everyone has a great week. I will be starting chemotherapy on Wednesday. I still am not sure if it will be ACT or CMF. Talk about frustration. BTW my chest still is sore and tight from the port insertion. Tuesday will be 1 week. Any one else have this issue? -
LiLi - the two drugs I have seen people on due to damage from Herceptin are Coreg and Lisinopril, see what they have to say about those. I think your plan makes sense, and as far as Taxotere being enough to handle positive nodes - it definitely is considered to be for triple pos, and is preferred by Dr. Slamon, the Herceptin doc - but make sure to ask for as specific stats as they can provide for triple neg. I am hopeful that they will give you reassuring news.
onefineday - Zofran was totally ineffective for me, but Compazine was good for me. I was told that if Zofran did not work within a fairly short time - like 30-45 minutes - to start on the Compazine immediately, if that didn't work move to the Ativan. All of these drugs work by different mechanisms, so many of them can be taken in pretty short order - you won't have too much drug in your system. There are several other drugs you can try besides Zofran and Compazine - Ativan, Kytril, Emend and Sancuso patches. There is no excuse for nausea with the number of drugs available to chemo patients - so keep pressing until you find one that works. Do not suffer in silence, tell your oncologist. I was told to always take these meds ahead of the nausea - it is much harder to get a handle on things when you are already nauseous.
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Kellee - you don't sound crazy at all - you just sound like the rest of us! Hmmmm - well if we are all crazy at least we are in good company. Ramble away, even though we don't see it as rambling. This is the place where others REALLY understand the stuff you are going through. And by the way you and your husband should be entitled to good karma for the remainder of your marriage!
Jaybird - I did have some discomfort but because I had my port put in during my original surgery, my breast and lymph node dissection always hurt more so my port didn't get much attention.
Lgk - glad to hear you had a better weekend. How sweet of your step-daughter to do the lemonade stand to raise $ for cancer.
Special K - I agree staying ahead of nausea is the better plan - I deal with motion sickness issues regularly. I picked up my post chemo meds early (we had a silly pre-auth glitch at time of surgery and didn't want to deal with that post chemo - of course it didn't happen because we were proactive) and I noticed my MO's instructions for the anti-nausea meds are to take them every 6 hours the 1st 3 days and then prn after that. -
Hi Ladies, spent the weekend with my kids and allowed my mother in law to take over and nurse my husband's health while he recovers from pnumonia. They came home from college, both of them attend separete college on the island. They are young adults in college and asked me to be honest with them so I have given them the facts. My nurse navigator is great at writing down notes at every single appointment and I share it with them. I want to protect them and shield them from all of this but both of them are strong-headed like their mom and want to learn about the BC, daughter has pick my particular BC to do a speech in her communication class. Tonight, before they left they broke down and cried because they both don't want to see me go throug any hard SE. I've tried to reassure them that it's normal to be angry and sad, but if I suffer from any SE it for a short time so I can increase my % that I will not have a reaccurance to help me live another 20-40 years:) They are smart kids and understand all of this but the emotional pain in their eyes tonight was harder then when I first told them of my diagonis cause they are no longer in shock. My family has taken of the motto "Search & Destroy Mission" so greatful I learned this from this site cause my military family was able to relate to this. We ended the night with smiles & long hugs with "I love you, over & over again" b4 they left.
Kelee- completely relate, if you are crazy so am I. Sounds like we both have had a rough year. Since my husband came home from the hospital I have continued my 2.5 mile walks, started this before my chemo because in March2013 before we transferred from Washington DC I had to have a total hip replacement due to a car accident and then in July had my diaognias.
LiLi -If there is a like button I would press it for you, completely understand. I am taking part in a clinical trial when I start chemo in a couple of hours to monitor my heart. I don't have a heart condition but heart disease does run in my family.
Sunday was a emotional roller coster- woke up complete angry and scared, didn't have to put a brave face so I put on my walking shoes, left crying and singing songs to give me hope and encouragement. Walking has been my best therapy cause I've been able to get out all my emotions. I also went to Sunday service for more emotional strength. Later I felt like if I was ready to conquer the world. I started taking Dexamethasone Sunday morning, suppose to help me with nausua. I went to the nail shop and took off my shelac nail polish, had them cut it down really short and just used Hard as Nails polish (learned this from the TCH tread) we will see if this help my nails. Im went back and forth about fasting but decided to not do it this time and if I get any bad SE I will fast my next cylce. I don't know if anyone can really be prepared for chemo but I've been proactive buying things suggested on the Chemo bag list, don't really know if I'm ready for whatever comes and but hoping for the best. Still nervous and anxious, but calm too. Very weird feeling.
Sorry to ramble on..and...on but cant sleep, it's 1:40 am and wide awake. I should have asked my MO if I could take my meds for anexity that helped me sleep when I was first diagonised but didn't and afriad of mixing it with the Dexamethasone. So here I am wide awake posting.
Wishing everyone a positive week and will post when I can..THANK YOU for all your support -
Busy appointment day for me. Dentist (check) Surgeon for port (check) Genetics Counseling and testing (check). Thursday I will have my port placed. Unfortunately I have to wait for a late day appointment. I cannot eat after midnight and a possible 2pm procedure. I might as well sleep all day - but I will go to work for a few hours I suppose. Took a walk through the infusion center today - wow it was busy. Made a stop at Starbucks on the way home... Pumpkin Spiced Latte (check).
I hope everyone had a good Monday.
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Hello October Ladies! Looks like I'll be staring my A/C on the 17th. I will be getting my port in on the 10th by my BS. Not happy about having to be put out again, but I don't numb well, so to sleepyland I go
Will be three weeks out from BMX with TE's on wednesday. I think I'm doing really well and actually went to work for a few hours today and hope to the rest of the week to get some time in before chemo. Now to start the search for the link on "things to do to prevent SE's".I saw someone posted earlier (Kellee??) about the B-47 study. Found out today that my insurance will cover my infusions as the study covers the Herceptin. I have also been placed in an arm of the study that I will be one that will receive the Herceptin... so year of chemo here I come!! Herceptin will start with my Taxol in mid december.
Trying hard to have a good attitude, but totally scared out of my gord at the thought of chemo, dealing with family (have a 1 and 3 year old girls) and work! Good luck to everyone and all are in my thoughts and prayers... glad we have each other in this.
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Hello Ladies. I found out that I will definitely be starting CMF on Wednesday. I was all ready with the ACT information so now I am searching for what ever information I can find out about CMF. If anyone can help me it will be greatly appreciated. Thanks
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Hi everyone! I am scheduled to get my port tomorrow at 11am. I'm kind of nervous, but I'm sure I will be fine. They told me no jewelry so I took my engagement ring off with some difficulty but I can't get my wedding ring off! I can't even remember the last time I took it off. I think they can put tape over it. I meet with MO on Weds, tried to call today for bone scan results but she was off. Hope everyone's treatments are going well, I will probably join you next week.
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Ml40- thinking of you today for your treatment. I am right behind you starting AC tomorrow. Had ECHO today hoping everything is OK with heft as heart disease runs in my family (father died at 54 with heart attack). Taking A is making me anxious bc of risk to heart but MO doesn't thinking is good idea for taxotere bc of my lung sarcoid. Kinda like double risk for possible SE of pulm toxicities.
Everything is ready to go for tomorrow afternoon...been anxious all day and can't imagine I will be able to sleep tonight. -
Hi everyone. I have an appt with my oncologist on the 3rd to discuss my chemo treatment so I don't have the exact start date but I know it will be some time this month. I go back and forth with feeling strong and feeling sad, which I'm sure you all can relate to. Thanks for starting this thread.
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kkmattie - Herceptin is not actually chemo - it is a monoclonal antibody - a targeted drug that is given by infusion. It does not, on its own, cause hair loss or many of the other side effects that chemo does. It is given with chemo initially, then continued for the balance of the year. Once chemo is complete most people have few problems with receiving Herceptin only. There is some possibility of heart related issues, but the vast majority don't experience this. I did have a runny nose, and towards the end of the year some mild headache, that was all.
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I hope you will all support me as a member of October 2013 chemo group. I will be having 12 weekly infusions of Taxol, a year of Herceptin, and 5 years tamoxifen. The MO scheduled me to start 10/7, but since my daughter is getting married 10/12, I asked to delay a week. He agreed to it, although I still have to see him on the 7th anyway to set up my schedule.
It seems like most of you are having ACT, which I understand is more harsh than Taxol, and you do it every three weeks instead of every week. I am so scared though. If anyone knows anything about weekly Taxol - good or bad, I'd like to hear from you. I believe it helps to be prepared. The September surgery thread was very helpful to me.
Thanks.
Denise
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Ugh, I'm losing my mind. Having been sure I was going to do a/c, now that I'm 2 days away, I looked through my notes, and its t/c. I'm not complaining, except that I left my brain in some other lifetime!
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Gram - wishing you all the best with your port placement!
Lgk - all the best to you as well as you start your chemo!
Welcome KKMattie, Jenn and Denise!
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