TRIPLE POSITIVE GROUP
Comments
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Rhonda,
I'm surprised your Onc said most people lose weight during BC tx. The opposite is actually true. The steroids go a loooooong way in accomodating the weight gain. I read, and was warned by my Onc, to EXPECT a weight gain..and I would have gained weight had I listened to my Onc who told me to rest, take it easy, sleep when you're tired, etc.
I didn't do any of that. I pushed myself further than I thought I could go, and then went some more. lol
(He has since changed his suggestions to patients! Now he recommends exercise every day...I like to think I had something to do with changing his mind, but alas, I think it was probably the research coming out of Harvard...heh)
Most of the women I know in RL gained a minimum of 10-20 pounds. I didn't want to do that because I knew if I went into perm. menopause..the weight would be even harder to lose than before BC.
The fasting thing, was just something I did after chemo was over and only taking Herceptin. Anxious to get back to my life pre-BC, I honestly didn't think Herceptin was a big deal. Little did I know it was destroying the heart I worked so hard all my life to keep strong. Oh well.
You may be craving sweets because it is a quick energy source. Easily converted to energy. More complex carbs and protein have to first be broken down by the body, which requires work/calories, and then used. When I was in tx and didn't get enough protein I also craved sweets. And on steroid days! I knew one of those steroid days I would make brownies and eat the whole pan! And I did. But I burned it up working out and cleaning house because I didn't sleep a whole lot while on roids!
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Bless you TonLee. I love everything you wrote! I am so anxious to get back to working out and being my regular active self. Everybody is on my case to "take it easy" because this drain won't stop that I'm going crazy. I know they have my best interests in mind, but I really have a hard time being inactive. I might run home from the doctor's office when he takes it out on Thursday. Just kidding (sort of).
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Lee, you crack me up!! And yes, sometimes when I'm in the chemo chair I see a little scurrying of muskrats around me... ;-)
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Question for those of you who went through chemo, did you find yourself actually physically weak? I wouldn't say I'm fatigued, just weak, wussy, legs hurt when I walk, short of breath...does this go away afterwards?
I feel like I'm 80 years old, dry skin, hemorrhoids, bald head.
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Hi, Pbrain-- Good to here from you
I am still weak but each person is different. My joints ached and I could not stand for long periods it hurt so bad when I was in chemo. But i'm not that bad anymore but strength wise I feel I totally lost it I am totally tired and warn out just snow-blowing my drive way and side walk it takes me about 2hrs and I am exhausted
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Pbrain a few weeks PFC my friend gave me free tickets to see Pilobolus at the Harris Theater. We were 3 rows back on the main floor. This means we had to walk down 3 (double) flights of theater stairs… not a bit deal. Now image walking up 3 flights of stars especially after sitting. I had to take one flight at a time. Talk about feeling like an old lady. My 33 YO friend the athlete was pretty patient with me trying to get up the stairs.
I was so stiff after chemo I couldn't even sit cross legged on the floor. Weak too even though I was power walking. Right after each tx I did feel a little short of breath but that went away. Be sure to mention that to your onc.
week 5 PFC the stiffness started to lift significantly. If you can keep moving/exercising it won't be as bad.
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Question for everyone: After all treatments are done do you get scans every year? I will be totally done in March and last March I had MRI for brain - a CT scan and a bone scan when I get done this March my doctor told me we will be scheduling all scans for March and for then on out we can use this as the dates.
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Ang, My last herceptin is next week. I have never had any scans and to my knowledge none are scheduled. I will also have an echo next week,but that's it. Makes me wonder ???
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ang I had an abdomen scan, bone scan, chest x-ray and breast MRI before surgery. After chemo since they saw some lesions on my liver they scanned for 2 years till they were convinced they were just cysts and stable. Never had a brain scan. So I'm done with scans unless I have symptoms. My onc doesn't do scans unless there are symptoms. To be honest I don't really want all that radiation if I don't need it. Of course I must be diligent and if I do have any symptoms that go on for more than 4 weeks I need to report them.
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Ang: I had CT scans of abdomen, neck, chest, pretty much everything but the brain. MUGA before beginning and every 3 months. Nothing since and nothing planned unless symptoms surface. I'm with Lago, less is better to avoid the radiation. I'm even back to the once a year mammo and ultrasounds!
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Thanks guys, I feel like an old mule. I have to walk a bit to get to my parking spot at work (envision Office Space--yeap, that's about it, over hill and dale, although we have no hills in Indiana..) I always feel like I need to sit down about half-way through.
I'm due for an echo, so I'll nag this Friday at chemo. I just wanted to know if anyone else felt that wimpy weak...it's weird. But it gives me a new respect for the aged and the disabled!
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PBrain, I felt weak for a few days after the last 3 TCH treatments, but then it faded. It may feel counter-intuitive, because you feel like you have no energy, but the more active you are, the better you feel!
Even the days I felt the worst, I tried to walk around my block at least once. I had a mental picture of the exercize making the chemo leave my body faster by getting things moving. On good days, I went to the gym and even was able to do zumba classes. It really helped me physically and mentally. Believe me, if I can do it, any of us can!!
Lastly, on a good note..... I am almost 5 weeks PFC and my eye tearing seems to be stopping!!!!! I only needed drops a few times today. Ladies...there is hope!!
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pbrain - lower hemoglobin is also giving you that tired leg feeling - your thigh muscles are not being oxygenated. Once you finish chemo and your Hgb comes back up that feeling will go away.
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Gratitude, I think cgesq was getting the nipple tattoos, not the rads tattoos. I could be wrong, and if so, I concur – hardly felt a thing. Re tamox, you can try it and if it drives you crazy, think of some plan Bs, like an ooph or something. I’m highly er/pr+ so I am just going to assume that I will have few problems with tamox and hopefully will it to be so. (Like it’s that easy, hah.) I start tomorrow – I’ll let you know.
Msbelle, I get those from time to time. I think it’s an inflamed lymph node but doesn’t mean it’s a cancerous one. They usually come and go. Actually I had one recently so I should have it checked out, if it’s still there.
Macho, they are expensive, unfortunately. I know that Arlene used the elastogels and followed the penguin cold caps regimen with good results. I think they are less expensive. However I am also under the impression that not everyone loses their hair with taxol. Also, taxotere can lead to permanent hair loss in a small % of women; I don’t think that’s a concern for taxol.
Pbrain, you’re back! I was wondering where you went and how you were doing. I’m glad the end is in sight. Can’t help you with the GI issues. I definitely felt weak during chemo and I exercised all the way through. I am not all the way back but I was making significant progress before rads knocked me down again…. I had a bad rads experience but I think I’m in the minority with it. (Terrible dark moods, really tired until I was onto the boosts, so you don’t have to scroll backwards.) I have a lot of joint stiffness though. A LOT of joint stiffness. And various other aches and pains which I did not have before, or not like this. But I concur with cgesq – force yourself to do something. Once I got started walking, swimming, whatever, it usually felt easier for awhile, until I was ready to stop. I was ready to stop way earlier than pre chemo of course but still I was exercising more than most healthy people.
Ashla, that’s a great development!
LeeA, my mom had a radical double mastectomy but no rads. No nothing else. It probably creates a false sense of security in me that it didn’t kill her and never came back, even though she has a million other health problems. Never got lymphedema either. But what is this about SpecialK and her distant micromets? What???
I am having my bone scan tomorrow. I am feeling calm-ish about it at the moment, we’ll see how long that lasts. Please wish me results which CLEARLY show NOTHING SCARY. Just, body riddled with arthritis at the age of 46, that kind of thing.
Ang, MO ordered a bone scan and a CT scan for me at my request. He’s not crazy about lots of scans b/c of the risk of secondary cancers from excess radiation. Presumably I will get the all clear shortly (thinking positive to counteract my obsessive gloom and doominess during rads … did I mention the lousy mood it put me in?). I probably will not want to be getting those too often unless I have symptoms.
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cypher - I had a 20 cell SNB and a 6mm node - local metastasis removed by complete axillary node dissection prior to chemo - not distant!!! Not to worry!
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cgsq, I just finished my last Chemo treatment and have suffered with very teary eyes. My onc said my tear ducts were clogged frm the chemo. I had an opthomologist looked at it and he didn't think it was too bad and said to wait until I was through chemo. Just wondering what kind of drops you used?
PBrain. I have been very tired and with very low stamina. I think it is a function of accumulation of the treatment. To ward off the nausea I have used medical marijuana and feel so much better. I don't feel like the zombie i did with the drugs.
Not sur what to expect from radiation - any thoughts from someone on SE's. will my hair start growing back while on radiation?0 -
Bellanan.. I too had very teary eyes,my opthomologist gave me a script for Fluorometholon. It really helped. Both eyes teared but my left eye was much worse,almost like I was crying. I had success with these eyedrops...
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Macho mouse.....taxol only here. Pretty much the same report as the other post. I was fairly wiped out on the third day. If I had too,I could have worked but I took time off all through chemo. Well actually ended up taking the whole year off as my te's got an infection, so I had all kinds of docs turning in leave requests.
Pbrains...I ended up with fissures and had to see a specialist. Used a special protocol of prescription stuff. I think some of my problems came from all the surgeries though and the big C after those.0 -
And pbrain, it looks like it is raining sideways in your area. The warning alarm just went off here and woke us up, so I thought I might as well play on the iPad. Sheesh....winds just pushed over some semis. Hope I don't end up in a tree.
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Specialk, you mean a 20 node SNB? That's a lot of nodes. I guess what I meant, or thought Lee meant, was that you turned up with micromets in a node that was NOT one of the sentinel nodes. For ex, I had a SNB with 4 nodes removed. That's what lit up and there was no cancer in any of them. This gives me a feeling of security, but it's possible that some of the other nodes actually had cancer in them even though the sentinel nodes did not. Hopefully NO, and hopefully even if there was something the chemo killed all of it. Me confused.
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Pbrain, the hills in Indiana are way down south - near Louisville. I lived on what's called a "knob" in Southern Indiana. A knob is just a name for a steep hill but regardless of the name it's really beautiful down there along the Ohio River. I just did a quickie google image search - here's a link to a pretty good photo of what things like like down there:
http://farm8.staticflickr.com/7035/6728588469_9d59d031e8_z.jpg
It's beautiful but I sure don't miss that weather...on the other hand, we have earthquakes out here but no warnings for those.
That said, stay safe, ladies! I need to check the weather in the area where my mom and son live. I get so nervous about tornado warnings - especially for my mom. Many years ago a line of tornadoes went through and took out a good portion of the woods behind their house. So scary. I still sometimes have dreams about tornadoes. Strangely enough, out here we rarely even get lightning and thunder! But like that old song goes - when it rains it really does pour. Especially where we're located (closer to the mountains).
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cypher, I can never remember your mom's story correctly and I was wrong on the size of SpecialK's micromet in her (local) node. I'm sort of like Gilda Radner's character getting things all screwed up in translation! Sorry about that but nonetheless, wonderful that your mom has had so many BC-free years since having her radical mastectomy. I always think about Nancy Reagan who had a radical mastectomy back in the eighties and is still living today. Also, lots of positive thoughts, well wishes and prayers coming your way for your scans! And also, glad to hear your mood is better. I always remember how TonLee described radiation (from the infamous archives).
Good grief, I don't know about you but it's freezing up here (at least freezing to me)! I have one fantasy after another about moving to Kauai and getting the rest of my treatments at Wilcox Memorial Hospital in Lihue - but, I would truly miss the oncologist Relda and I share and besides that - we're not going anywhere (until vacation in the fall). Weird, the things that can keep us going. That one beach on Kauai is my mental go-to place when things feel like they're getting too overwhelming.
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Lee, it has been pretty cold lately. I can never complain about teh rain here because we always need it, but my house doesn't deal with it too well. I have these low spots where water pools near my garage/office, and my old sewer pipes are getting flooded with mud. Have had lots of plumbing issues to deal with. And I usually line dry my laundry and when I can't I have to use my dryer, which is old and inefficient (but I use it so seldom I don't want to bother replacing it). I go to an impossibly high grassy meadow I visited once in a dream.... Thank you for the well wishes! I'm trying not to be nervous about it. Wasn't MO's idea, and he would know. Though I do notice a lot of oncologists order them.... Was there some reason your onc did or is that standard practice for him, just in case?
How DID TonLee describe radiation, and how can I search for that? You are a whiz at this stuff.
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cypher - it's on page 56 of this thread. About midway down. Beautifully written and addressed to a poster named Michon:
http://community.breastcancer.org/forum/80/topic/764183?page=56
We've had our share of plumbing issues as well. Our house is a mid-century modern - built in 1961. It's old, but not as old as me! (1958). I've been chuckling about that SNL skit that Jodie Foster quoted "I'm 50, 50 years old!"
ETA: re: scans/oncologist - it's standard operating procedure for him.
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Love this board, but it sure has moved fast in the last 24 hours!
pbrain - Nice to have you back. We can always count on you for the poop discussions
. I had hemerroids so bad after tx1 that I had to get a script for special suppositories to shrink them as non of the OTC stuff helped. I also used the wipes and did the sitz baths with epson salts. It took about a week for them to finally shrink down.Talked to my MO yesterday about the eye tearing and he wants to start of conservatively with OTC artificial tears. If they don't work then we will move on to the ones that need a script.
MO also said that I will sart on the anti estogen drugs after rads while still on the Herceptin. I thought they didn't start that until after Herceptin was finished. Maybe it's because my ER+ status is 90%. I am post menopausal so it won't be Tamoxafin. He told me the name and it started with an A, but since I didn't write it down I can't remember which one (chemo brain).
Also my Potassium levels were low, 3.0 mEq/L, so now I have to take huge potassium pills 2x day for the next 3 days, then get my blood work done again. I am guessing this is a fairly common SE.
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cypher - I had bi-lateral SNBs during BMX. The surgeon took 2 nodes from the non-cancer side. Took 1 node from the cancer side, which had a micromet of 20 cells in just that one node - it was declared clear in the OR, 20 cells found on post-op pathology. I had axillary node dissection and they found the 6mm node further up in the additional 11 modes removed. That is an unusual situation, to have such a tiny micromet in the SNB and find a large node further up.
bren - the vast majority of us started Tamoxifen or an AI after chemo if we were not doing rads, or after rads if we were - but still on Herceptin.
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Bellanan I just use artificial tears per my ophthalmologists recommendation but don't use anything that says "gets the red out"
Bren I started my ESD 5-6 weeks PFC while doing Herceptin. My NP said that they have women start after rads so waiting the 5-6 weeks wasn't a big deal. My onc wanted me to wait 4 weeks but we waited a couple more weeks so I could start on the 1st of the month.
cypher good luck today.
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Ballanan,
I had my eyes checked by my opthomologist, and it wasn't blocked tear ducts causing my tearing. If you have blocked ducts, you may need a stent. There is a woman who posts here named LindaK who got relief that way and can tell you about it.
My eye dr. recommended OTC drops called Systane Balance, which I was using every hour-2 hours, on an as needed basis. He also recommended that I put in Refresh PM ointment right before I went to sleep. (Warning....its like a sliver of vaseline, so everything is blurry after you put in in. Use it immediately before you get into bed!) The Refresh ointment felt soothing and I found I didn't need as many lubricating drops in the morning.
When none of the OTC stuff helped, he prescribed steroid drops called pred forte. They are pretty strong, so you have to get the pressure in your eyes checked every few weeks, but honestly, even they didn't help much.
I just think time and being off the chemo will help!
Good luck.
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Hello Triple+ Friends,
So glad to see the conversation going strong. I've been following, but not as obsessively as at first. I felt I needed to focus more on my actual day-to-day life, i.e., DO SOMETHING not related to BC.
Pbrain, good to hear from you. as you can tell, you make quite an impression and have been missed. I was thinking of you when I was doing some cleanup in my perennial garden. Felt so proud of myself for picking up the rake and seeing the progress. Some daffodils are blooming, and others are coming up - simple pleasures.
On the fiber, hemorrhoid subject. I take Miralax for a few days prior to and after chemo, or whenever I get "behind." Something my PC doc told me that stuck in my head is that without liquid, the fiber just sits there. So I think of chasing high fiber foods with a glass of water.
Interesting weather in our area this morning, tornado watches and warnings. Lee, I have had recurring nightmares about tornados, too. Similar childhood experience where we were narrowly missed. We didn't realize what was going on at the time; my mom was vacuuming so we didn't hear the wind. My dad was outside under the shelter of our barn and said afterwards that he had noticed the rain going sideways!
My TCH #3 was more difficult this time. SEs lasted about 10 days. Horrible indigestion, so the nurse doubled my dose of omeprazole. I had trouble swallowing past the lump in my throat -- long story short, I was OVER IT by the time I felt better. I think that was the first time I've actually been angry! Figures that what finally made me mad involved food.
Just babbling I guess, but all the best to all you amazing folks!
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Dizzy,
Ha! You sound just like me. The reason I had to keep the drain in so long was because I stayed active. It literally felt like losing a leash when it was gone! Good reason to celebrate
SpecialK, I pray your bone scan will be ho-hum NORMAL!
LeeA, thank you...you are so complimentary! I think I wrote that during the rads funk! lol Maudlin.
Nodes are tricky. Unless they removed every single one of them....my Onc and BS agreed that once it is in the lymph system, all bets are off. The amount of cancer in my SN INCREASED the further it got from my tumor. What that told me is .... in the absence of gross disease (they get in there and see it)....they can never take enough nodes to assure me. And the research I looked at during my tx time showed radiation even more deadly to cancer cells than chemo. I was going to pass on radiation...or well, considered it. But I remember reading tons of materials and the gist basically was...once we have surgery, the blood supply in the area of surgery is compromised (doesn't work as effectively). Chemo may get there, or if damage is bad enough, may not. Radiation covers it all and is not dependent on the blood/lymph system (which might be compromised) for delivery.
I don't know if that makes sense to anyone else, heh, but it seemed like pretty sound logic to me!
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Hi fluffqueen01,
First off, CONGRATS on being two years out since NED. MAJOR milestone!!!!!!!!!!
Re: the impact of all the treatments on one's intimate life, I did check out the sex/intimacy thread, and someone there suggested organic, virgin coconut oil. It works REALLY WELL, thank goodness.
As I think I wrote, the cells tested from my tumour tested 100% positive for estrogen and progesterone (and for the HER2 molecule, too), so I have no choice, unless I choose to bury my head in the sand, except to try the Tamoxifen. I feel very warm to extremely hot so often now, and I HATE it, so my big worry is that that issue will get much worse. Oh well, if it prevents BC from returning, I guess it is worth it.
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