August 2015 Chemo Group
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musosgirl, yay! I may ask about ovarian suppression, but my MO takes a pretty conservative, "less-is-more" approach. No scans other than regular echoes, etc. That said, I've read the results of the SOFT trial, so I'll bring it up with her and see what she says. Last time, it was "ve vill think about ovaries later. Get through chemo first." (She has a Lithuanian accent.) I'm wondering if they're going to come back at all, or if we've cooked them completely with the tax/carbo. I guess time will tell. I start Tamoxifen in January.
notdoneyet, how's that for a silver lining? I actually really like being able to be totally non-committal about everything. "We'll see how I feel" is my stock response, and people RESPECT it. I'm not giving it up when this is over, either; I rather like being able to decline attending things (especially meetings, but don't tell anyone I said that) I don't want to attend.
superious, while I'm intrigued by the idea of having curly hair--mine was straight and baby-fine, though I had a lot of it--I'd love for it to come back in its original form, just to prove people wrong. I'm contrary like that.
MsBrompton, I'm stubborn as heck about work stuff, but I'm learning to respect my own limitations. That's one big takeaway from this whole ordeal, methinks. I hope your chest cold clears up quickly; there's just nothing quite like a virus caught while in steerage.
I like the idea that Herceptin-only is some kind of dessert. Tiramisu, perhaps.
vashton, others on the board can speak to this better than I can, but from what I understand, Herceptin is a piece of cake. Very few side effects; I've read here and there that a flu-like feeling for about 24 hours isn't uncommon, and a runny nose seems to be a given. Beyond that, you can expect hair growth (it might be slower than what you're used to) and regular functioning overall.
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Shout out to Kate for keeping this thread so brilliantly woven and facilitated!
Vashton, Herceptin every 3 weeks is like a big flu jab. Not really tiramisu, no, but not serious poison either.
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So happy to see so many of you finishing this phase of treatment. It was wonderful to get away for a few days to Captiva, FL last week and have quality family time, 90 degree temperatures, a rented convertible, fresh fish that my husband caught himself, and the best doughnut ever--orange coconut. And there was a mojito on day 1 and margarita on day 3. I wasn't quite sure about headwear on the beach and in the pool so alternated between a sun hat and my fuzzy duckling head. It was so freeing and involved lots of SPF50! While I always had cancer in the back of my my mind, and there were a few times I cried in the shower because it reminded me of what I've lost and how much I stand to lose, it was a nice break, especially for my kids and husband who had a really shitty summer beside me.
But I truly missed this thread and all of your stories, awkward questions about symptoms that we ALL want answered, challenges, and triumphs.
I had my fifth treatment of taxotere, herceptin, and perjeta yesterday and also got the results of my scans. Everything is shrinking, even the 6 cm. skull lesion, which is a huge relief. I had a few days earlier this week that I thought if I started crying I might not ever stop. My entire body aches, and because of the severity of my bone metastases, I made up all kinds of scary explanations. But my NP said it's from my lack of estrogen due to chemo-pause. That I can deal with.
Off to Massachusetts this afternoon about 6 hours away for my grandmother's 90th birthday party. I haven't seen the whole extended family in over a year, some in 10 or more. Looking forward to reporting back people's foot in mouth moments next week!
Rachel
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Rachel-I am so glad to hear that your tumors are shrinking and you had a nice holiday with your family. The smile in your picture tells it all. Let's hope for many more family vacations and continued tumor shrinkage.
Hair....I am so looking forward to having some again. Mine is growing a bit but very patchy. Doesn't look curly like my old hair. It is straight and sticks out. I think I may actually buzz it off. I have lots of white fuzz that is longer than my dark hair that is growing back. Some of the hairs are really long(well not really but when you have been bald for months they feel really long). If I buzz my head then they will all be the same length. My one eyebrow is thinning and I still have my lashes. I am hoping that they hang in there. I have started using Latisse on them as this encourages growth. We will see if that works. I am hoping I will have some hair by Jan when I head to Nashville.
Notdoneyet-glad the transfusion helped you. No wonder you were so exhausted. It is nice to have an "out" when you don't want to attend things. I have used this a few times as well.
All of you ladies who are working are amazing. Although I am starting to get bored at home. I have been doing little jobs in my house. Cleaning cupboards and organizing things. By the time I go back to work I will have gotten rid of lots of junk.
My friend is nearing the end of her year long Herceptin infusions. She said they are a piece of cake. It is just a pain in the butt having to go in for them. So hopefully those of you facing these injections will have a similar experience.
I meet with my MO on the 25th. I am guessing he will put me on Tamoxifen then. I will discuss having my ovaries removed as well. I would like to just be done with all of this. I am wondering if my period will return now that I am done chemo or if it has cooked my ovaries.
So now that I am 3 weeks PFC I should only have a few more weeks of fatigue. Looking forward to having more energy again. I am also hoping that the ringing in my left ear stops soon. It is constant and pretty annoying. I wish I could say the ringing was from being at a concert. No just dam chemo poison, no fun involved.
I hope those of you still having treatments are having mild SE and you are coping well. Sending love and healing thoughts to all!0 -
DeeRatz, I'm right behind you :-) Just got to work and already feeling super tired.
Annie, I made taco salad last night complete with that homemade shell, it was a hit :-) Thanks for the inspiration!
Hazel
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Back again after a few interesting days! It's good to catch up with everyone. Notdoneyet, I'm glad to see you're doing better after the transfusion (and wow, amazing that it required that level of assistance to get your blood back to normal). I'm so impressed with all of your resolve & good humor in the face of all this.
I got my Chemo Diva wig the other day, have worn it a few times. In some ways it feels good to have my "old" hair, and in other ways it's weird. (Especially seeing it disembodied and laying on a table or whatever! I need to get a wig stand for it.) It's not all of my hair, for one thing - I think she only used half of what I sent her. (I had a LOT of hair, and probably her system isn't set up for putting that much hair on a halo wig.) I've worn it out a couple of times shopping, I feel much less awkward with it on (plus a hat) than with just a hat by itself. On the other hand, it's SO long, and I've really gotten used to having short hair! So I think I'm going to have my hair stylist cut it to a bob - I might even be able to get away with wearing it that way to visit my parents, since they might not be super clear on just how short I cut my hair before.
KateB, no, they didn't say anything - probably because hubby was out all afternoon and kiddo didn't tell him I was sound asleep until he was almost home. Everybody was already waiting at the restaurant, so I think he just wanted to not keep them waiting. Our friends were very kind, and it's funny in hindsight, but honestly boys can be so clueless sometimes.
As for what I'm reading, I haven't moved on to a novel yet, but I think I'm going to read Miss Peregrine's Home for Peculiar Children. I've had it on my nightstand forever. Right now I'm reading an actual history book, called Rome and Jerusalem. It's all about the two ancient cities' politics and culture, and why they were so at odds with each other in the first century that Rome felt it necessary to sack Jerusalem and throw all the inhabitants out in the year 70. Fascinating, but definitely not light reading! Fortunately I'm halfway through already, so I think I can move on to something lighter in a week or so.
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Dessert was mentioned. Tiramisu you said? Here's an easy recipe (Make for 1 9x13" baking pan).
16 oz. Mascarpone Cheese or Cream Cheese (I usually use light, but fat-free cream cheese doesn't blend well)
1 package (3.4oz) JELL-O Vanilla flavor Pudding
2 Egg Yolks (or 1 whole egg) Optional
16oz Milk
2 Tbsp Rum (optional)
2 pkgs Lady's Fingers Biscuit (or you can bake a cake)
VERY STRONG cold coffee
Unsweetened Cocoa Powder1. Combine first 5 ingredients (cream cheese thru rum), use electric mixer & beat at medium speed until well blended. Set aside. I have been skipping the eggs for years, no one missed it.
2. Use a small bowl to hold coffee. One at a time, quickly dip each biscuit in coffee and then line the bottom of 9x13 pan. (Note: dip quickly or biscuits will become soggy.)
3. Use spatula or spoon, spread half of the cheese mixture over the biscuits. Repeat the process above to make a second layer biscuit, then cheese.
4. Dust Tiramisu with unsweetened powder. Cover and place in the refrigerator for at least 12 hours or over-night before serving.
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Ah brilliant. I always wanted to know how to make tiramisu! I will try this, superius.
Bluefrog/Rachel, your story is so heartening. I'm no fan of Lance Armstrong but don't forget he once had lung and brain mets which disappeared on chemo.
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I really, really want tiramisu.
How's everyone doing? I hear crickets in here--which is a good sign, because that must mean we're doing well!
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I was really craving it too and had DH pick some up at the store this weekend. It wasn't good, but that could still be defunct tastebuds.
I meet with a plastic surgeon tomorrow to discuss a reduction. Then my first large Herceptin Thursday. I am getting Perjeta as well but that should be my last dose. Then two weeks off before surgery.
I am still fatigued and dealing with neuropathy. But things are slowly improving.
Would really like to hear from everyone--especially those who have been missing for awhile...0 -
I've been thinking about what some of you mentioned about ovary suppression / Removal.... Is part of that because of the HER2 status? (beside the possible brca factor)
The only time my MO talked about suppression was BEFORE Chemo, along the line of preventing the eggs, in relation to Cytoxan. She actually mentioned about harvesting eggs before chemo. "Have you thought about having kids in the next few year" she asked. Any other MO talked about that? Or is it just mine (because I'm single & no s/o nor kid?) I saw another Dr one time while my MO on summer vacation, he said chemo might throw me into early menopause; then my MO (before last round) said my period would probably come back in couple of months... But of course now with Tamoxifen threw in the mix, who knows what's going to happen!
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Musosgirl, I'm so happy that you're on the mend. Feeling better is a great thing!
Superius, ovarian suppression (OS) + Tamoxifen is one arm of a big ongoing study (called the SOFT study) that shows that OS + Tamox or OS + an aromatase inhibitor (AI) might be superior to Tamoxifen alone for women with ER+ breast cancer. This particular study's focus isn't on HER2, though I've read a few things that suggest that triple-positive (ER, PR, HER2) BC might have a better prognosis with OS, too.
Here's the thing: it all comes down to quality of life and cardiac/bone health. I'll use myself as an example. Because I'm in my mid-30s, my MO wants me to try Tamoxifen alone first. If my periods come back (which I suspect they will; my ovaries have always been stubborn girls) and I want to try OS, she's willing to do it, but she's cautioned me that it will keep my body in full menopause. She's okay with that, because the Tamoxifen will exert a protective effect on my heart and bones--it behaves a lot like estrogen in the body, and those two systems are the ones most affected by the sudden and ongoing drop in estrogen caused by ovarian suppression. She doesn't want me to take an AI because AIs don't exert that protective effect, and the SEs can be more intense (primarily joint pain) than those caused by Tamoxifen.
Some women with certain genetic mutations (BRCA, PALB2) try OS before opting for an oophorectomy, to see what menopause is like for them. Honestly, I've got all the symptoms right now--I swear chemo has aged me by 5-10 years; I can see it in my face--but technically my ovaries are still "intact," whatever that means.
Ultimately, it depends on 1) menopausal status, 2) your preference, and 3) your MO's preference (in that order). If one is already menopausal, an AI inhibitor is a given.
Here's a link that breaks down the SOFT results: http://www.cancer.gov/news-events/press-releases/2...
Whew. That was a lot of medicalese, wasn't it?
Over here, I'm feeling pretty good. Last chemo is the 25th, and because it's the last one, I'm not dreading it quite as much as I have in the past. I have some kind of sinus thing going on, which I blame on the dry furnace air, and I've been having more bone pain this round, especially in my hips and lower back, but that light at the end of the tunnel is getting brighter and brighter. I'm chomping at the bit to schedule my prophylactic MX, but might have to wait until May, given my teaching schedule. . . . I harbor a secret fear that, if I do that, they'll find something creepy in righty, so I'm hoping that I can have it done right at the beginning of January. We shall see how it shakes out.
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Hey all! I got round 2 of FEC yesterday. It was a rough road last one so I am very hopeful that this one will go better. I got some new anti nausea meds so putting a lot of stock in that being key. I am also going to really push the protein and try to be more active. SO FAR I feel ok (just made of lead)...
I hope you all are having a good week and will continue to do so.
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Hi. I've been quiet lately ... no news is good news. I've finished 4 of 12 Taxols. My eyelashes and eyebrows are getting really thin. I feel worse about that than about losing my hair. :-( Other than that, the Taxol has been very easy so far.
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Vicki, I remember the day I suddenly lost my eyebrows and half of my eyelashes. Until then I had been "passing" but at that moment it was obvious to any onlooker that something was amiss. It only took me about a week to get over it and now I don't even notice. I guess a new (temporary) normal. Ho hum, the things we do for health. I hope taxol is treating you well, I have heard that it is bad for some people but I had nearly no issues (a little fatigue) from that one.
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My eyebrows are thinning, for sure. My eyelashes seem to be holding on. Am I naive for hoping that they won't all bite the dust in one fell swoop (or at all)?
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I have zero eyebrows and mostly no lower lashes (for like 5 or 6 weeks) but somehow I have hung on to some upper lashes, I'd say that means that yes, you may hang on to eyelashes!
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I have like 10 eyelashes left......and very few eyebrows. #5 taxol on Thursday. My only side effect has been horrible bone pain on day 3..... and also my legs being full of lead!!!!! It is crazy! I had to put a chair at the top of my stairs to rest on when I go up there! I am 37 and turned into a 90 year old lady in 3 months!!!!! Ouch!!!
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I'm checking in from the chemo chair getting my 5th of 6th tch infusion (and then herceptin for 9 mos). I'm hanging in there and check I nhere every day. Hair is gone (fuzzy) eyebrows and lashes intact. You women help me everyday, thank you.
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Hi everyone. I've done 4 taxol and number 5 is Thursday. It's still going a lot better on Taxol, although I think the horror of AC is starting to fade and my self pity is building again. LOL. I'm on my third round of thrush. Got the prescription on Friday and today I'm afraid it is starting to come back. I'm really hoping it's my imagination and the dang stuff isn't getting resistant to diflucan.
I'm definitely having some neuropathy in my fingers and toes. Also, all my nails are looking iffy. I'm doing L-glutamine and tea tree oil. The nausea is a lot better and fatigue improved for the first three treatments, but is starting to build again. My eyebrows are going fast. I could get away without using eyebrow pencils for a while yet, but I'm using them for practice in the hope that I'll know where to put them when they are completely gone. Eyelashes are thinning, too. I'm having to get three shots of neupogen post each chemo for low WBC. I'm having some bone pain from Taxol and some additional pain from the shots, plus some random nerve pain. All in all, the pain is very manageable and I only rarely need to take Tylenol for it.
Things I won't miss when chemo is over (along with the obvious - nausea, fatigue, lack of taste):
1. I will NOT miss - the big plastic bin of pre-meds and meds that sits on my kitchen counter to deal with side effects
2. I will NOT miss - sideways pee (from lack of pubes)
What will you NOT miss?
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Tip for those who (like me) lost eyebrows and eyelashes but not head hair. It is a really stupid idea to put on hair gel and then go out in the rain, because the hair gel runs directly into your eyes. There, I knew that would be useful. #cancerhumor
My other news: saw plastic surgeon yesterday to be measured up for my definitive implant. We're agreed that he will reduce the non-cancer breast (I've always wanted to be a bit smaller). I asked about nipple sharing but he said not in the same operation as it increases the risk of infection. So he said, come back in 6 months and I'll shift half your remaining nipple onto your mastectomy side. And I said I'm not having any more operations, what's the alternative? And he said he could flatten the nipple (mine always stuck out quite a bit), and pucker up the skin on the cancer side and make it match the non-cancer side in terms of shape. So I will end up with two boobs the same size (small, pert!) but one will have a light nipple and one a dark nipple. Like odd socks. Suits me. Husband did a sort of double eyebrow-raise as if he might even find it erotic. And apparently I can get it tattooed if the colour starts to bother me.
The process of getting measured up is a bit surreal. He has this 'implement' that consists of a spiky 3-D expanding ruler and goes up and down and side to side with it, scribbling in a notebook. But I'm getting used to my left breast being someone else's technical challenge...
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Thanks, ladies. It's so nice to know I am not alone. I am hoping that enough eyebrows hang in there that I can use them as a guide to draw them in. I haven't had any bone pain and the fatigue is very light so far, so I really shouldn't complain.
Tam-iam, we are on the same Taxol schedule. I am just starting to notice some tingling in the fingers on my right hand. I've been doing L-Glutamine and B-6 to prevent neuropathy. Is the tea tree oil also for that? I have an acupuncture appointment this afternoon, so I will see if there is anything they can do for that. BTW, I think that acupuncture has really helped to reduce my hot flashes; I've seen a definite improvement the last couple of weeks.
Things I won't miss the awful saline flush on chemo days. I hate that smell/taste!
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Kate-Thanks for the info. I meet with my MO next week. I would like to get my ovaries removed. I am already having hot flashes from hell and trouble sleeping. So might as well get rid of my estrogen makers. Not sure what he is going to suggest.
It sounds like many of you are nearing the end of your treatments. Will be nice when we are all finished. I am almost 4weeks PFC and the fatigue is getting better. If I am busy one day then I still really notice the next day I am out of gas.
My brows have thinned but my lashes are hanging in there. I am crossing my fingers that they stay. I started using Latisse on them about 2 weeks ago in hopes that they would grow and not drop out. I did buy some false lashes yesterday in case they do leave me. It will be an adventure if I have to use them. I'm sure there will be a few bad words involved.
I buzzed my head again. I had a whole bunch of white fluff on my head and then dark hair coming in. It was so uneven and looked crazy. So I buzzed it a few days ago. Now everything is the same length. It has already grown a bit since then. I wish it would hurry up. We are supposed to get snow here tomorrow and my poor little head is cold. Even with a wig or a hat it is chilly.0 -
I am getting the white fluff too! I can see some darker hair coming in but it is much slower. I am keeping the white for now since it is at least something on my head...
My eyebrows thinned terribly but my lashes have really stayed put!
My fatigue has not improved but little guy had pneumonia and now the rest of us have terrible coughs and low grade fevers. Both boys are at the peds office now. If big guy ends up on an anti-biotic I may ask my MO if I should take mine preemptively--I need to be healthy for surgery. Just realized it is 3 weeks out, not 2--gives me a little bit more time.0 -
So . . . I might be able to have that prophylactic MX on New Year's Eve. My partner is like, "but it's a holiday." My response? Get righty the hell off of me, and then we'll have a holiday!
I bought an eyebrow pencil today. I have enough brows left (though they're thin and sort of sad-looking) that I don't have to work too hard to fill them in. They look better. Fingers crossed that the remaining ones hold on tight, 'cause I'm not very good with brow pencils. Eyeliner, I can do. . . .
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things I won't miss...... crazy side effects. Also got a fever and a cold sore.... two days later got a cold sore in my nose! Who the hell gets a cold sore in their nose!!!!! Chemo....the gift that keeps on giving!
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Musosgirl- My fluff was at the point where I could feel it moving as I was walking. Didn't like the feeling. It was so fine. I hope you don't catch pneumonia. They would delay your surgery. They wouldn't want to put you under with compromised lung function. Sending healthy thoughts your way.
Kate-I can understand you wanting to get the surgery done. I was glad I had both done at the same time. This surgery should be easier if they don't have to dig for lymph nodes. Your recovery should be easier. I am getting pretty good with my eyebrow pencil. Practice makes perfect.
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Things I won't miss . . . I won't really miss a single thing about chemo, other than the annihilating cancer bit.
But these stand out:
1. Alternating constipation and diarrhea,
2. Feeling hungover when I haven't done anything fun the night before,
3. Having the inside of my nose feel like someone stuck a Dremel up there and sanded off the skin,
4. Chemo tongue. Ew.
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My little guy came back with no remaining infection and big guy probably has a viral infection. I woke up from a nap with a 100.1 fever and headache. The boys are miserable and whiny and I just want to go to bed. Unfortunately DH has a rehearsal for a Christmas concert so I am in charge. Goldfish crackers are okay for dinner, right?0
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Eck. And chemo tongue. Seriously the worst lingering SE.0
