August 2015 Chemo Group
Comments
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Hi Ruska-
Just want to second what Tam-iam said. I haven't had the heart test yet either. Since I'm 39, in otherwise good health (except for this whole cancer thing
) , and used to run, he's starting chemo before the test. I start tomorrow and I'm scared. A big thank you to those who've posted about their first infusions-my husband keeps saying I'm like a tea-you are helping me to keep everything in check and not get too overwhelmed by this. I've got my basket o'meds all set for whatever side effects come my way. I'll hold your hand through this if you hold mine.
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Brief vent: I'm constipated, light headed, have dry eyes, and am feeling like I have a mild hangover. Things could be much, much worse, and I know that.... I'm just trying not to worry too much about what this stuff is doing to my body. It's killing any remaining cancer cells, and that matters. But sometimes it's scary, you know?
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Thank you for such a quick response, I fill a little better now.
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I have a lot of other questions , when I was at the doctor's office I forgot to ask . I had double mastectomy 3 weeks ago and I have a hematoma on one of my breasts ( the healthy one ) is it ok to start chemo?
Another think I have a back pain started after my surgery, which doesn't bother me a lot but I just think is it because I sleep only on my back or may be I have metastasys to the bones ?. I had whole body pet scan 2 months ago and it didn't show anything. So just worried.
And also another question, what does that mean to have an aggressive treatment . My OS I'll need to do the aggressive one . But from what I see I'll have only 8 rounds of chemo every other week, is it aggressive? May be I shoud ask for more?
I'm so sorry for all those questions, just very nervous .
Thanks to all ladies here , you keep my hope!
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Ruska - I'm getting neo-adjuvant chemo, so no surgery yet for me, but it sounds like we're on the same type of chemo schedule. My MO said it is an aggressive schedule since it's every two weeks instead of three weeks apart. I couldn't tell from article I linked to in an earlier post whether getting taxol at the lower weekly dose vs the higher every other week dose was more effective, or just caused slightly different side effects. Good luck and let us know what you find out.
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A tip that was helpful to me that might help some of you - I kept a daily journal of my SEs and what medications/treatments I took/tried. It made it easier to talk about it with my MO and also helped me look for patterns as I moved through subsequent chemo cycles. Each round was a little different, but having the timing of when things happened helped a little bit.
Someone mentioned an upset GI tract - my MO OK'ed me to take Prilosec every day, and that really helped with the burning, heartburn feeling.
Thinking of you all. It was less than a year ago that I was starting chemo, and already it feels like so long ago.
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The aggressive treatment means that you will get every 2 weeks as opposed to 3 weeks so the chemo will hit hard and fast theoretically.....you will likely get neupogen or neulasta shots which will prompt your body to make white blood cells on top of the chemo.... this is so that you can have the next round of chemo sooner.....if your white blood cells are too low you cannot get the next treatment so the shots will theoretically ensure you can go 2 weeks apart.
I got lucky with my side effects...I didn't have too many however I did get the GI pain. All I will say is ginger is your friend. I took ginger gravol capsules and they sorted it out straight away. I have only had 1 AC which was last week so I am definately not an expert but hopefully I have helped a little
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Just to add.....I also didn't get the heart test....but I am going to talk to my oncologist and see how they will be following me at my next appointment as it has been a concern of mine too
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I had my port put in on Friday and my neck still hurts. My dr said just to take Tylenol and Advil together. Same effects of Vicodin but no se. I start chemo on Wednesday and I am terrified! I am more afraid of the unknown than anything else! I am also getting fills every other week, just to add insult to injury. Any good advice for first timer AC treatments?
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Mama-bear - I had my port placed the Friday before last and my neck was sore for about a week. It doesn't hurt any more, but I can still feel it and it kind of creeps me out. I think I'll be as excited to get the port out as I will be to be done with chemo. I start AC on Tuesday so I'll let you know how it goes. Starting to pack my "chemo bag" now!
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hey Mama bear and Buzz, the area around my Port & neck was sore for about a week too. That'll go away. And about 12 days after, i was able to carry things normally with my "portside" arm without discomfort. Getting it bumped though hurts, but not terribly so. Glad I have it now for treatment.
Yessss! There is light at the mysterious chemo tunnel. It's day 10 and body actually feels mostly normal. Endurance is less, but not enough to keep from normal tasks. Still get headaches on and off, but milder now. Sleeping is wonky still. Worst is the stupid pain from damaged tissue in mouth/tongue. That was probably from eating spicy Thai curry during chemo instead of sucking on ice cubes like the smart patients do!
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Hi ladies,
It looks like I'm going to be starting chemo (4x TC) in early September. I don't see a September thread yet so I thought I'd ask my question here.
Do you *need* a port? My BS told me she hates them and won't put one in for me, if I want one I need to find another surgeon!
I'd really rather not have yet another scar, yet another wound, yet another surgery. Is anyone planning on not doing a port??
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It was my MO that ordered the Port and my breast surgeon isn't the one that placed it. If I'm not mistaken, it was a radiologist. I'm having a total of 16 treatments (plus blood draws before each) so I'm sure I'll be grateful for the port. Talk to your MO, but if you're only having 4 treatments, it might not be worth it.
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My OS (oncology surgeon) wanted a port put in. She knew I would need chemo, although she thought it would go in whenever I had my masectomy. Instead chemo came first. A radiologist at Moffitt, where I'm getting tests and surgeries done, did it as an outpatient surgery. I'm doing chemo and maybe radiation (if I don't move first) up by house since I'm getting treated in different cities. My veins are small and always hard to find when I need to have blood drawn for any reason, so a port was the way to go. It bothered me for the first week, but now it's fine and I only notice it if I turn too much on my side in my sleep. I'm only scheduled for 8 doses of chemo.
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Hello sbeddows, you are not alone. I'm doing the same treatment as you. I found several others on the ILC discussion board with a similar protocol. I've only had one treatment so far. It it so helpful to read of others who are going through the same situation. This site is a wonderful place to connect! Hugs!
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Well, I am new here. I just found this group, but my journey began back in May when I discovered a lump. June was a lot of waiting and July was a ton of testing, but I started chemo Aug. 6. I was bummed when I got the her2+ test back--we had already scheduled a lumpectomy and they weren't sure I would have to do chemo yet. But that test changed everything and now I am here on day 11 of my first cycle trying to wrap my mind around these side effects (will I have 18 striaght weeks of diarrhea?). The plan as far as I can tell is Taxotere, Carboplatin, Herceptin, and Perjeta for six rounds, then surgery and radiation, then Herceptin every three weeks to finish out a full year, and finally hormone suppressors for 5-10 years. It is disheartening to be at the beginning of this fight. But even at the end I think worry about it ever coming back will plague me.0
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I just realized I didn't really introduce myself except for my bc info. I am 34, just celebrated (kinda--half-hearted dinner out and too tired for a movie) 15 years of marriage, and am a homeschool mom to two boys. I don't normally start their school year till after Labor Day, but this year I am really nervous. How productive will we be during chemo? During surgery? Surgery will happen around Christmas so we can take a longer break--but then again who wants surgery right at Christmas? I suffered severe hyperemesis gravidarum during my pregancies and now have PTSD from that time--severe fear of nausea, vomiting, eating (foods that might make me throw up). I really thought HG and PTSD would earn me a lifetime pass on long-term illness but I was wrong. Our church and our new homeschool group have been amazingly supportive--I never got this kind of support in my previous illnesses, but I think some of that is people are more familiar with cancer. Anyway, I like music (my musician husband and I name our pets after musical instruments), reading (sci-fi is my love), and history (PBS and documentaries are common-place in our home).0
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knitnpurl, it will be okay! It's amazing how quickly things start to become your new normal. I'm not thrilled about returning for another infusion on Thursday, but I'm miles ahead of where I was before my first one not even two weeks ago. A lot of the fear involves uncertainty and unfamiliarity, but soon you'll be best friends with your chemo nurses and figure out what works for you. (((hugs)))
Kate, I'm sorry to hear about your mild hangover, as you call it...that's pretty much how I felt last weekend, only without the dry eyes and with a lot of queasiness. If it's any consolation, I feel great this weekend! I've walked for an hour both yesterday & today, and I have a lot of energy and no appetite or stomach issues. Other than feeling I should stay around home because of my challenged immune system, I feel almost normal. I hope the same happens for you by next week.
Ruska, I'm unsure about the hematoma and think you should definitely run it past your doctor. Have they examined you yet? I've got some seromas and am fine with going through chemo, but my surgeon is monitoring things on a regular basis to determine what might need to be done in the future. Re: your back, it definitely could be from the surgery combined with new back sleeping. I am 5 1/2 weeks out from my BMX and have finally been able to start sleeping on my right side (although the port is annoyingly in the way), and I definitely have not been comfortable being on my back every night. We're both on an aggressive, dose dense chemo treatment of every two weeks, instead of every three weeks. Let's be aggressive together.
mama-bear...re: first-timers to AC...that was me 10 days ago.
But here I am anyway with my awesome advice: consider cryotherapy to avoid mucositis. I kept ice in my mouth during the entire treatment on the recommendation of many people who went before me. It wasn't difficult; I just kept sucking on ice cubes (I'd brought along Popsicles, but they were more trouble than they were worth). This particular cryotherapy has actually been clinical proven to help prevent mucositis, and completely anecdotally on my part, I haven't had any mouth pain or strange tastes. I'm not sure how it will progress, but the ice is an easy enough thing to incorporate if you're interested in trying it. BTW, my port was placed 11 days ago and I'm still intermittently sore.Tiffany, my MO is the one who ordered my port. I'm going to be having IV treatments for the entire year (will be continuing with Herceptin after the AC and then Taxotere/Herceptin/Perjeta), so a port makes sense. I've been told I'll have it in for at least two years, since my cancer has a high recurrence rate & the port can't be placed back ever again in the same place due to scar tissue. Personally I'm a fan, but it can be a scary prospect. For some reason, my 21-year-old daughter is more freaked out by my port than my BMX scars.
Musosgirl, nice to meet you. I'm also triple-positive, as is Kate. We both post on the triple-positive thread as well, so please check that out. Like you, I am also worried about the 10 years of AI (for me, it is projected to be Femara) & the high rate of recurrence, but I can say I'm starting to get through a few hours at a time lately during which I don't think about cancer.
Now, after this long post, a small vent/concern. In my real life (i.e., before cancer!), I had an unusual system & only pooped a couple of times a week. Yes, that's strange, but it is what it is. I used to suffer quite badly from IBS, so I never felt too concerned about a lesser frequency. My doctors have told me to take a stool softener if I get constipated. Well, I drink a ton of liquids, walk a lot, and eat high-fiber foods and tons of veggies & fruit, but my system still doesn't want to move. Last week I took a Senokot-S and had terrible diarrhea the next day, so my MO recommended I try Colace instead the next time I feel constipated.
Well here I am, it's been three days since I last went, and I feel absolutely fine. I have no pain or sense of being backed up, so...I should just leave it alone, right? I shouldn't take a Colace...or should I? Since my normal isn't everyone's normal, I'm confused.
I just finished eating a bowl of Total with skim milk & also some rice, broccoli and chicken and am staring at this little bottle of Colace. Help me out, please!0 -
JenPam thank you for the advice on the ice.... I have heard that some where before too. On the bowel part...I too have a finicky tummy. I don't go every day either. This is scary for me with the chemo. But having the pain meds from the port surgery and the drugs they gave me I have not gone since Thursday. I took 3 colace and nothing....so I think one would be okay for you. Gonna pick up some juice tomorrow to get this body working before Thursday's treatment!!!! Need all the help I can get right now!!!
Also you all are very inspiring!!!!
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Hang in there Kate!
@Tshire, I don't have a port either --4 treatments for me, too-- so I'll let you know how it goes. I have little veins, but the doc said we'll give it a try anyway.
I have some tingling in my lumpectomy arm (inner upper arm and now in my forearm) before chemo. I'm worried about neuropathy from chemo making this worse. I'm going to take my compression sleeve and ask for advice.
Tam-iam, thanks for the encouragement!
10AM California time first TC treatment. Yikes.
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Mamabear, I actually googled what works best for narcotic constipation and the senakot or generic works best. I was using colace and still had issues with going. Changed to generic senakot and am much better now. Of course when I start chemo in the 27th, it will probably change
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Good luck with your treatment today, Sloan!
Taz, I heard the same thing about Senokot & it's definitely more powerful. Like Dulcolax, it's a stimulant laxative, while Colace is only a stool softener.
I can confirm that Senokot works! (Only a wee bit too well...) mama-bear, since you already tried the Colace without relief, I think Senokot would be helpful. I hope this doesn't come out wrong, but please let me know what happens!
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@tshire, I chose to get a port after much back-and-forth about it ... I've got finicky little veins that are always challenging for all but the most skilled nurses/doctors drawing blood, but I really didn't want a port ... anyway, I talked extensively with a friend who went through chemo and got it all via her veins and was just fine. So I'd say go with your BS's recommendation and avoid the port for starters - you can always have one put in if your arms start to suffer (I think - ask your doctor to be sure).
@KateB79, you can update my regimen now if you want to, I'm getting weekly low dose Carboplatin and Paclitaxol, along with Herceptin, for 12 weeks, followed by Herceptin for another year and Interferon B for a year or more. (Let's just say my doctor does things a little differently.)
I'm feeling very vulnerable. And weirdly cyborg-like at the same time. I've never had so much as a cast, so it's pretty weird to find myself with an internal equipment addition (aka a port). I was worried about the port surgery, but it was just as easy as the Lx and SNB (easier in some ways, because I could actually use my arms afterwards). The bandage comes off on Tuesday and I start chemo on Wednesday. I'm trying not to panic about the first time I see it. I've been told by my BS that it's "not visible" but that seems impossible to me, how could there be a port in your skin that isn't visible?
I have a question for those of you with ports ... Do you cover your port with a waterproof bandage when you shower? I think I would be inclined to cover it, even though my BS says it's not necessary with modern ones. I guess I just want to be careful/not hurt myself or something.
Good luck to all of us. What a strange situation to be in.
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Ladies ... I'm reposting this from another question on this forum because I think it's really important to know about this option when you're going to start chemo shortly (and aren't doing the cold cap). This company will make your own hair into a "halo wig" that you can wear under hats or scarves. The cost is pretty low AND covered by most insurance policies, according to the site. I have very long hair and was planning to donate it to a cancer-wig charity, until I saw this. Now I think I will have it made into a halo wig to donate to my very own self.
http://www.chemodiva.com/Your_Own_Hair_Chemo_Diva_...
I don't mind the idea of having short hair, I've had both short and long hair in my life and both are fun. But I think this will get me through the balding/bald period nicely. Just wanted to share!
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OK one more thing ... I was told that they were going to give me Benadryl before chemo treatments to prevent allergic reactions. There was a study done not too long ago showing that Benadryl increases the risk of dementia. Since that is part of my family medical history, I'm keen to avoid using Benadryl. Has anyone used Zyrtec instead of Benadryl successfully? My MO said that I could try Zyrtec instead, but he'd never had anyone choose to use something other than Benadryl. Thanks.
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Mom2ABoy, my port is more prominent than I expected. However, it's entirely beneath the surface, so once it's entirely healed, there's no reason to protect it from water. I've heard that some people even swim with ports, but my MO said it would be best not to submerge a port for too long. The bumpiness under the surface feels very strange, but I expect to become so accustomed to it that I hardly notice it. *crossing fingers*
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Buzz, good luck on Tuesday! We're rooting for you.
Mama-bear and Buzz: my port creeps me out, too. It did, anyway, until it proved its worth last Thursday during my first infusion. I would much rather have it than deal with IVs every three weeks. But I hear you on the cyborg thing. . . .
Birdysmom, glad to hear about the light at the end of the tunnel! We're getting the same treatment. . . . My newest, and maybe most unpleasant, SE is nighttime bone pain in my legs and hips. I'm told this is a Taxotere reaction. DEFINITELY eat ice cubes during your next Tax!
Tshire, feel free to post here, and welcome. If you only have four rounds scheduled, you may not need a port. What does your MO say?
Musosgirl, welcome, and sorry that you're here (but welcome nevertheless). I get everything you're saying, including that it's disheartening to be at the beginning of this fight. . . . But if you head over to the triple-positive group, you'll find a lot of ladies who have fought—and won. I'm 36; I have high-grade triple positive IDC; I had a mastectomy in July and just started TCHP.
Sloan15, sending you good vibes today. Let us know how it went!
Mom2ABoy, I'm feeling vulnerable, too. The port looks like a big mosquito bite. It's freaky at first, but you'll get used to it. I don't cover mine in the shower—once it heals, it's just a small disc under the skin, and I find that thinking about it makes it even weirder. It took a few weeks before I could sleep on my right side (or my left, given that I had a MX), but now everything feels pretty normal in there. I didn't compile the master list, so I'm not sure how to update it. Can you say more about the Interferon B? Sounds interesting!
Have a great week, ladies. I'm just sitting here hoping my white counts stay high.
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Re: constipation . . . My MO told me that I can "pulse" Senekot with Colase, which is exactly what I did yesterday. It worked, a little too well!
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in the middle of the first infusion. At least got answers about the meds. The other meds are used when you're HER2+ which I am not. The weekly taxol vs every other week is up to me and the doctor. Will see how it is when we get there, but it the same about of meds over different time spans.
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