August 2015 Chemo Group
Comments
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KateB79 I just wanted to pop over from the September thread. I had a full genetic panel done through Ambry genetics they had a 100 maximum cost but I received no bill. My family history and Age made it possible for have a full genetic test for any link to ovarian/ breast cancer. My insurance did reimburse them for the BRCA tests.
There was sort of a good reason to find out about the PALB2 though it has caused me a lot of stress. This tipped the scale towards me having Bilateral Mastectomy/ oophrectomy and changing to Arimidex. BTW I am interested in what your MO might say. I have heard there is some interaction between Tamoxifen and Herceptin.. Thread about Tamoxifen and Herceptin.
We finish TCH at the same time. I am wondering about Radiation was that something that was offered? I hadn't heard of that offered with a mastectomy? I know they are more aggressive with younger women at least they keep telling me this.
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exercise_guru, I'll have a consult with the radiation oncologist once I'm through chemo and have the genetic testing. My breast surgeon's office wants to do the Myriad MyRisk test--is this one you're recommending different from that one? Thanks so much for the tip--$100, I can handle. $6000, not so much!
My MO said that a lot of research was done in the late 90s about Tamoxifen and HER2, and that the ooph and AI is one option for me. She doesn't recommend it, though, given that I'm only 36 and low bone density runs in my family (so far so good, for me right now). That's where the genetic testing comes in: if I test positive for BRCA or PALB2, the ovaries are coming out. . . . She also said that Tamoxifen used to be more of a problem with HER2 than it is now (Herceptin changed things), though from what I understand Tamox can cause more resistance to Herceptin. Who the heck knows? At this point, I'm not sure anyone knows much about anything. . . lol
I'll check into the Ambry test. Thanks again for the hint!
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exercise_guru, my MO says that I need the radiation even though I had bilateral mastectomy, and the reason is that I have stage 3 with 5 positive nodes. She didn't say anything about the age ( I'm 38). I did ask her why should I radiate the breast area if I have no breast left, and she said sometimes cancer can come back in a scar area. But I don't think you need radiation in your case meaning no nodes involved and stage 1. Friend of mine had stage 1 and mastectomy and never did the radiation. She is doing fine now. But you know it's you and your oncologist have to decide. About the young women... Usually they are treated aggressively because most of the time younger woman have more aggressive cancer, meaning Grade 3. So the doctors take it on a safer side I guess.
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Hello hello! Today was my last chemo infusion. Felt a bit surreal. People working there were congratulating me and I felt very sheepish because honestly all I've done is show up. They've done all the work.
The one nurse that I had trouble with (who has actually been doing my port connection perfectly the last two weeks, no struggling, and not a hitch) told me some interesting things, namely that (a) she is a survivor herself, seven years ago, no recurrence (b) she had the exact same cancer that I had, ER/PR-, HER2+ and (c) she is leaving to work at a different cancer center in a couple of weeks, so she'll only be there for my first Herceptin-only infusion. I felt like crying, I will miss her! Isn't that nuts. She's just been a big part of this experience. She said she'll drop by sometimes, so I'm sure I'll see her on occasion. She is happy about the move, as apparently she'll have better health insurance with her new employers. I'm happy for her.
Both of my chemo buddies were there, so we had fun gabbing as usual. My son did a little dance demo for them, so that was cool. (Dubstep, of course. It's his generation's "these kids today" music. Thankfully he put his music on low so it wouldn't bother people.) The nurses got to see him dance too. First time they've had a dance performance right in the middle of the clinic, I gather. So fun.
I met with my naturopath and she laid out the plan for my post-chemo treatment. Herceptin of course, plus regular exercise, some supplement changes, and enhancing my diet with more rainbow fruit and veg. That in particular is going to be a big challenge for me, but as she reminded me, now and as I move through DMX and reconstruction, it will become paramount to prevent recurrence, not just of breast cancer but any type of cancer recurrence, because anything that recurs could end up with metastasis. That was not what I wanted to be hearing my last day of chemo! Truthfully, I wanted to hear "Now that you're done with chemo, because it was caught so early and you're having a double mastectomy, you won't ever have to worry about cancer! Isn't that great!" But I guess it was a dose of reality, which is important too.
Hubby and son and I went out to dinner after to celebrate. Japanese food, but we couldn't go for sushi so we went for noodles instead. I wasn't sure how well my stomach could handle miso but I was pretty sure I'd be okay. The soup I ordered ended up being super spicy instead of miso! Hope I don't end up regretting that soon, LOL.
Overall it was a very happy day, even with all the uncertainty.
I wish everyone well who's struggling with S/E's this week! Remember, take care of yourself and don't ignore your gut feelings if you feel like you should be seen by a doctor or the ER. Drastically low WBC's are nothing to mess around with, especially if you already have fever. Oh and I second the plug for cranberry juice for a UTI. I had a UTI years and years ago, had no idea what it was (I was 22 so I thought I was dying, LOL). After I'd gotten the sulfa drugs or whatever they gave you back then, the nurse told me to drink cranberry juice at the first sign of a UTI in the future, I have done so ever since, and I've never had another serious UTI. So I definitely think there's something to that.
Take care everyone! I'll be back to tell about the Herceptin part of this journey and to check on y'all!
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Hi five, Mom2ABoy!! Great story about the nurse. I too share your BC type (a bit like being a rare blood group I guess!!). Herceptin on its own is completely tolerable. I get my reconstruction on 26th Nov.
My friend Ursula, who also had the same tumor type (5 years ago, Stage III, no recurrence), sent me this email yesterday, which applies to all of us:
"A friend of mine introduced me to the useful concept of green, amber and red days. Green/red being OK/zonked, and amber days being the days where if you look after yourself the next day will be green, and if you don't it will be red."
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Kate - I also had a full genetic panel done on me. I thought it was just a BRACA screen but it ended up being for everything and anything. I am BRACA negative but they did find a genetic mutation - I have one MUTYH gene. They sent me to a geneticist and she really questioned the need to do a full panel especially when I had only a 5% chance of being BRACA positive. Oh well - too late. I went to her to help with my decision about what to do with the other breast and she said there was no correlation between my MUTYH gene and breast cancer. So it wasn't a reason to have another mastectomy. I like knowing all the info BUT this piece wasn't really necessary. It's done - I'm glad I know I am BRACA neg. She thought I should have come to see her before having that panel done.
I pop in here from time to time to see how you all are doing. I am one month post chemo and I just started radiation on Wednesday. I have to say - it is a piece of cake so far compared to chemo. But I do hear the side effects don't hit you till 3 weeks in. I will deal with it when I get there!
On a happy note, I have trained for a marathon throughout all this crap that I had to deal with and last Sunday I ran the NYC Marathon and completed it in under 5 hours! I am thrilled beyond belief! My quote for the day is "She believed she could do it so she did".
Congrats to all finishing chemo. It is great to have that behind you. Hang in there all you tough warriors. You will get through this and come through stronger.
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Ah, MsBrompton, that is a very useful concept. Yesterday definitely felt like an amber day. When we got home I went to bed early (after writing here of course) but now I'm awake at 4:30am with my guts in a knot asking me what in the world I fed myself last night. Praying this won't turn into a red day! Hoping for green, and that this feelingis just a false alarm.
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Yay for being done with the chemo phase Mom2aboy!!!! Congratulations!!!!!
I am right behind you, my final chemo is Monday....
Hugs,
Octogirl
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Mom2aboy-congrats on your last treatment. It is a weird feeling knowing that is your last one. I hope you have mild SE in the coming weeks.
Suzanne-You are amazing and inspiring. I had started out chemo with going to the gym regularly. I have not been back since 2 days after my third infusion. Chemo kicked the crap out of me. I am hoping to head back on Monday with light workouts. I feel so weak and need to get back to feeling good again. Running a marathon....you Rock!
Good luck Octogirl on your last infusion Monday.
Michelle888-I hope your Neutrophils recover quickly and you stay healthy.0 -
Better now. I wised up and took a muscle relaxer. Probably will end up sleeping through half the morning but at least I'm not in pain anymore. I was seriously fearing an intestinal blockage or something!
Suzanne, a marathon! That is just beyond my comprehension. I get winded walking up a couple flights of stairs, and that is not how I was before I stand treatments. You're inspiring me to do more.
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What? A marathon??? I go up the stairs and have to sit down so I don't pass out, how did you train for a marathon? Way to go!
I am still having the crap kicked out of me 12 days after my first FEC, this stuff don't play. No fever anymore though, and I am on antibiotics so if I did have an infection that is addressed. But the doctor pointed out, with hemoglobin 7.2 I literally have HALF of my blood. That may be why if I stand up too quickly I feel like someone hit me in the back of the head and my heart pounds in my ears. So, not training for a marathon here but I am going to go look at exercise bikes because I KNOW I need more exercise than I am getting but I am worried about going out for walks alone during the day right now.
Those who have finished, congratulations. I will be there eventually, only 5 more... Those who are still in the chemo phase, we can do this.
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Suzanne50, WOW! You ran a marathon while going through this crap! I THINK I have an entry for the London marathon next April (I entered the draw and have not had a refund so looks like I'm in). It's 30 years since I last ran the London but I may just have a go, inspired by you... (Anyone know if thats allowed on Herceptin??).
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MsBrompton - all my doctors encouraged me to go for it. I don't know anything about Herceptin or its side effects. I worked my training runs around my chemo. It is doable! I was extremely determined. I also followed a fairly conservative training approach (The Non Runners Guide to Running a Marathon) - slow increase to miles and never had any injuries. It was great to have something positive to focus on and I had so much support! It was an amazing experience! I highly recommend if you can do it.
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Thanks for all the information about genetic testing. got to figure out with that life insurance thing first, I suppose?
Notdoneyet: I know! right?! marathon!!!! 4 weeks after last chemo, I finally noticed my iron legs disappearing & not needing to sit down to catch my breath after walking across the parking lot at work! It's now almost 6 weeks, & my MO mentioned the immune system should be back to 100%. I was at a bridal shower last Sunday & had 2 plates of Salad. RAW VEGGIE! BLISS!! Can I eat salad every day this winter?
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I guess I was lucky I was able to train through chemo. It was tricky at times. I was in decent shape before it all started so it probably helped me throughout. Or just plain old lucky. I do think the marathon was meant to be. I got in through lottery (first try!) and then chemo ended 3 weeks before marathon. If it was a week before I never would have been able to pull it off. The stars were aligned!
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A marathon. I am truly impressed and deeply humbled!
Here's a new one: my left eye and the left side of my tongue are twitching in a freaky way. I asked my MO at my appointment last week, and she said she's never heard of this happening. Well, it's happening. . . . Has this happened to anyone else? I'm guessing it's some kind of neuropathy, and I hope it's temporary!
Mom2aboy, congrats!
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Kate- Did you try acupuncture for your hot flashes? Wondering if it worked. I have such trouble sleeping at night due to mine
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DeeRatz, my MO told me to wait until after chemo is over; she doesn't want me to risk infection. I'm trying an acupressure massage next week--I'll let you know how it goes!
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you know it's not bad enough that I have no hair few eyelashes....very few eyebrows..... but now I have a cold sore in my nose.... oh this is so fun!!!!!
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Anyone with any tips for symptoms of low hemoglobin (other than get more blood)? Pounding headaches and elevated heart rate with any kind of effort are really keeping me down. I am upping my protein intake and trying to "exercise" (right, walking around is more than I can handle, I can't actually exercise right now!) gatorade, water, trying to stay hydrated... I was in at the MO last week and they weren't that worried about it. I may call tomorrow because I am really miserable but don't know if that is just "normal."
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notdoneyet, are you taking iron? I did, and it helped.
hey gals, I'm 2 weeks post chemo and i made it to Geneva on a work trip. OK, it's 7.30 pm and I'm already in bed in the hotel, watching TV, but I'm 'at work' and here. There is life after chemo!!!
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Is low hemoglobin low iron level? I know it's a stupid question but not sure if I am confusing the two. I had low iron levels so they gave me two infusions of iron about 5 days apart. I never had any side effects to low iron. I was tired but I don't know if I can blame it on that since I have been tired since having my kids 17 years ago. LOL
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Kate, both of my eyelids have been twitching. I have mentioned it to my MO twice and he ho-hummed it both times. It has gotten better since we switched my taxane so I suspect the Taxotere.0
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musogirl and kate, maybe you are becoming evil supervillans? Doesn't that usually happen after a real exposure to a hazardous material? And then the eye twitching begins...
Suzanne, not a stupid question, I should have just said anemia. Low red blood cell count.
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Notdoneyet - I would ask your MO about iron infusions. I did it right in their office and it takes about 20-30 minutes. The fastest way to get iron into your blood. I tried eating spinach and all that but it didn't help at all.
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I am, indeed, becoming an evil supervillain. You heard it here.
Chemo: the gift that keeps on giving.
I managed to make it to yoga today in spite of the crushing fatigue (the kind of fatigue that someone who hasn't felt it will never understand) and twitching face/eyelids, and I'm glad I did; it made a huge difference in today's worldview. Now: to the couch.
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My levels are RBC = 2.75 HGB = 9.5 HCT = 27.3
I am exhausted. they told me if my HBB gets to 8 they would transfuse but I am trying to avoid it. Doing the same thing Protein, hydration,sleep. I am not finding much energy for exercise if I do its a walk or yoga then I am spent for the rest of the day. Not sure if that helps but you aren't alone.
also I am going to edit to add: My eyes are twitching like crazy. It like one of those toys were you sqeaze it and their eyes pop in and out. So annoying.
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exercise guru: it does help, oddly enough, to know that someone else is kind of in the same place, makes me feel less alone. So, thanks.
My RBC: 2.1, hemoglobin 7.2, HCT: 21
I ended up taking half an oxycodone because my headache was such a misery. I am much less miserable now, although I don't love narcotics and the woozy feeling they cause. I am going to call tomorrow and ask about a headache remedy that isn't addictive (can't be anything that would mask a fever). Doc said something like tramadol one time but I didn't get it because I wasn't this bad with pain.
I did get a transfusion back in September and my hemoglobin was a lot higher at that time. I think my doctor isn't crazy about transfusions, he's pretty conservative. I haven't discussed this with him but I read a medical journal article about transfusions and cancer survival rates that pointed to transfusions indicating a poorer outcome. The theory was something about the blood products having been stored and that affects the way the body's immune system reacts to them (it said that blood that had been stored less than 9 days didn't have that effect). In any case, my hemoglobin was well under the threshold the other day and he didn't offer (and i didn't ask for) blood.
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Ugh, you guys, I'm so sorry about your RBCs. I feel like crap with RBC 3.29, HGB 10.5, and HCT 30.5, which all seemed really low to me.
Sending hugs. Big ones.
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My eyelids have been twitching since round 2. It's more prominent after treatment then tapers off.
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