Starting Chemo March 2015
Comments
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Indygal- I had a very sharp pain (on my bc side, naturally, also) that never went away at all for several days. It was kind of in my pelvic area, on the right side.
This happened after I'd had my ruling out mets/baseline PET/CT, but before I'd gotten the results. So of course that was all the proof I needed to start drafting my will. Seriously, I did that.
The pain went away, as mysteriously as it came, and my scans were clear.
It's good to tell the MO any time you have weird pains like this. I think it was Italychick earlier that said that a rule of thumb would be if a pain doesn't go away after two weeks, it's reportable. But since you're going anyway, talk to your MO now about it. They can't treat you if they don't hear about it. Nothing is too small or too trivial to mention. If you are made to feel that it is, you should be thinking about changing MOs. I think keeping a journal, or making a note in the calendar, or in your phone's calendar is a good idea for 3 reasons.
1) writing it down will, to a certain extent, bring it out into the light. It will be less scary than if you keep it locked away as your private secret. I think of unspoken or unacknolwedged emotions as farm animals locked in a dark barn. They can't see, and they are are scared, and they kick at the doors and walls trying to get free. Once you build a little corral for them just outside the door, in the sun, they can't run away, you can keep your eyes on them, and they will calm down and start munching on some grass instead of kicking and screaming.
2) your doctor will take you more seriously if you take it seriously enough to document it.
3) if it did turn out to be something, as much info as you can bring to the table will be to your benefit.
Of course nobody can guarantee you that this will be nothing. What I can guarantee you is that each one of us will have aches or weird pains the rest of our lives. And every time we do, we will all be thinking the same thing. It will be good practice for all of us all if we start trying to not let these kinds of thoughts dominate our lives and let cancer steal our time from us, however much that is, or our peace of mind. Acknowledge it, then go take a walk on the beach. You can't change what it is. All you can do is keep fucking cancer from stealing more from us than it already has.
A big hug coming your way.
Katy
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Gosh, anybody feel like a cookie?
I had my blood work done today and it was pretty good. My liver enzymes were the BEST they've ever been since I started watching and worrying. I know it may seem so silly, but I have worked so hard I feel like 🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉😎😎😎🎉🎉🎉🎉🎉🎉🎉🎉🎉
Also, the petit fours didn't show up on the scale. In fact last week's 4 lbs came off, so I'm back to within 5 lbs of my lowest. I struggle with my weight (being way too high) so this is very good. Very very good.
I'm thinking oatmeal raisin.....
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Just got done at the spa after 5 1/2 hours.
Got some pre-meds and then Herceptin over 90 min. Smooth sailing.
Perjeta next. I felt a little nausea so they put some Ativan in the IV but they think it's still left over from the AC and not from the Perjeta. Anyway...pretty smooth sailing.
Last I got Taxol and after about 10 min I got very itchy all over and started to rash up. They gave me some Benadryl in the IV and slowed down the drip rate a little and that resolved the rash.
Now I'm just tired from the Benadryl and Ativan but feel ok otherwise.
Going to sleep now...
Bekah
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That's good advice, Katy. I swear I need to stop google searching symptoms and mets rates. I'm going to just cool it and bring it up next week with my doc. I think I'm extra on edge anyway, because I know I'll be getting scans soon to see if chemo has been effective so far. The physical exam showed no change before round 3, but it's impossible to get a good measurement with a ruler when the tumor is so deep. Still, hearing the MO say stable instead of shrunk made me heartsick
Bekah. How many rounds of Taxol/Perjeta are you getting, and how far apart are they?
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Angie happy belated birthday! Your story brought tears to my eyes, I'm so happy your hubby is still with you and your girls! Sorry you had to be at the "spa" for your special day.
Diane sorry your feeling sad, it's a great photo of you and your sister.
Katy I ate1/2 a box of chocolates tonight, I had to put it out of sight so I'd stop eating it😋 it was a gift from my parents so I just had to open the box. And that was after I ate 2 slices of pizza and a slice of Stromboli. I haven't had pizza since my dx just the thought of it made me want to barf but today I just had to have it. It was good but not great, not from my regular pizza joint - I see more pizza in my future this weekend before Mondays "spa" day.
I've had some back aches for the past couple of days and it's terrible how my mind goes right to the big C, I would have never thought like this before. I know it's just some normal aches from not stretching, no yoga in 2 weeks - the mind can be our worst enemy.
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I did 4 rounds of dose-sense AC (every 2 weeks). Now I go weekly for Taxol and Herceptin. The Perjeta is added in every 3 weeks. Total time on this regimen is 12 weeks. After that, the Herceptin continues every 3 weeks to complete a full year.
If I continue to have an allergic reaction to the Taxol he said he will switch it to Abraxane but we won't know for another week or two - he wants to see how I do next week.
Bekah
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IndyGal, I have that right side twitchy sort of pain under my lower rib cage! I was so frantic over it about six weeks ago that my MO let me have a rib x-ray and liver ultrasound (even though he told me categorically he was sure it was nothing) and both were clear. I think mine is indigestion-related as the gallbladder is right there under the liver. It comes and goes now - I actually haven't noticed it for weeks but it's been around the last few days. It's amazing the peace of mind getting those scans brought me, though; now I don't even worry about it and figure it's just another weird side effect of all this stress on my body. Definitely talk to your doc and hopefully he'll let you get some scans to rule anything out.
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Same thing for me with the twitchy muscles under my rib cage. Went away on its owN but have had various twitching elsewhere so my MO is monitoring it. Didn't sound too concerned about it.
Happy Birthday Angie! What you have been through has touched my heart. You must be made of steel!
Go enjoy that cookie Katy! You deserve it!
Bekah, hope you rest well tonight.
Thanks for the motivation to get out and move. The Fitbit is a great idea! Mine is up in a drawer. Time to charge it back up!
Thinking of you all even if I haven't mentioned you by name. Still in pea soup chemo fog. Love all of you sisters.
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Thank you! Knowing that I'm not alone and that both of your MO's aren't too worried about it helped to ease my mind.
We sold our house yesterday and bought our new one! Some friends helped transport small stuff last night, and we are going to clean and carry more stuff over today. Movers come tomorrow. It will be a busy few days, but I'm going to pace myself. I'm pretty worn out, but we have a lot of help
This has given me something so positive to focus on for the future. Plus, I love interior design, so I get to start with a clean slate! Making plans for the future always reminds me that my "real" life will resume one day after cancer, and I haven't seen DH so excited and optimistic in a long time. I'm convinced now that this move, while stressful, was 100% the right decision for us.
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hi Katincolor!
I just did a search on hives and saw your post! I'm in February chemo group. Yesterday am I woke up itching. By the evening I had hives all over. Took a benedryl which seemed to work called on-call onc who said doubt if it's from chemo bec my last infusion #4 was over a week ago on 4/22. She was very non-chalant (sp?) anyway. But if other reactions happen days after infusion why can't this too? It's scary bec when u look it up says can be a sign of cancer. And I need to get screened for colon cancer. No symptoms but my mother has and at 44 I'm overdue for colonoscopy.
Sorry you're going thru this but glad I'm not the only one.
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I hear ypu Allison....about the bedroom and the DH. I feel so guilty.
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I had round #1 of Taxol, Perjeta and Herceptin yesterday. 6 hours at the spa which was probably the most tiring. I can't sleep in that chair. Everything went pretty good. I got nauseous during the Perjeta, ate cuz I thought I was hungry but when I said I still did feel right they didn't hesitate to give me some Zofran which gave some relief. Then it came back once I was home and after I tried eating again I was sitting on the toilet. Grrrrrr!!! Twice last night in the bathroom with diarrhea which was pretty awful but nothing compared to some SE's from AC. 11 weeks to go!!
I hope my spa day sisters had similar results. Sorry to hear about the rash Bekah. They freaked me out a bit telling me I could have a breathing reaction because I have asthma.
Thinking of you all even if I am not posting often!
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Ugh, 6 hours! That's awful!
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Carrie - I got nausea during Perjeta too and they said it wasn't supposed to cause nausea....they blamed it on AC still in my system. Now I wonder if that's something related to Perjeta! I guess I'll see in 3 weeks when I get it again...
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I really hate it when they "dis" our symptoms. Especially since it's so obvious they still don't know everything about these drugs. When they minimize the SEs, I feel they are minimizing us. And I don't like that.
I usually spend about 7-8 hours in the chair. Once 9 and it wasn't even the first time. yikes
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They didn't totally 'dis' it - they gave me some Ativan right away. But they certainly weren't willing to relate it to the Perjeta.
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here is some good news- after all the talk about cookies last week I went in a search for where I could find some healthy ones that tasted home baked. I called this store last Saturday and caught the owner on her cell on a vaca in San Diego (her biz is in Fla).
I told her the story of How we all met and supported one another and had all (well, some) had been craving cookies lately but because of the stupid BC many are afraid of indulging in old standby habits. Like cookies. She was very touched by the story. Anyway, long story short, I ordered a bunch and she gave me 20% FOREVER! and said to tell all chemo sisters the Sweet20 discount is good for them always too. Just mention in the comments chemo sisters and use the code Sweet20. The cookies do taste home made. a warning tho there appears to be a minimal amount of soy. If you aren't ER + no worries. I am going to call and ask how much a little is but otherwise the ingredients look very healthy (for a cookie).
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Happy Birthday Angie, Thank you so much for lovingly sharing your attitude of gratitude!! I hope to run into you at the infusion center again!! Kimberly
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Bekah- I'm glad they took good care of you and right away. I was more commenting on MaryJCs post about her MOs nonchalance. And from time to time other comments that have been made, and of course my own axe to grind (it seems it comes to come down to the personal) -my surgeons's minimalizing my ongoing surgery pain. Really makes me feel small.
But I hope you are feeling better on this day 2 then any other previously, and are spared the constant nausea.
Hugs, katy
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What Katy isn't telling you is that she sent me some of these cookies after my cookie episode. I mistakenly thought they were from the chemo Angels group because it said chemo sisters on the box. I am very touched, and it was a super sweet thing for Katy to do for me. Just another example of how this group is so sweet and caring. And omg, the cookies were absolutely delicious. I ate one package and saved the second in the freezer for a crummy day. Thank you so much Katy!
Round 4 coming up Wednesday. I've been thinking about the infusion speed thing. I get my cocktail on the standard timeline, like 30 minutes for Herceptin. Has anybody asked their facility to slow down the drip? I've seen other women post that they asked for a slower infusion time and it seemed to make side effects better. Granted, I haven't had that many yet, but with rounds 4, 5 and 6 ahead of me I am a bit worried because I think these are the rounds where things get worse, like losing eyebrows, eyelashes, etc. I have noticed thinning eyebrows, and one area where my lashes came out they aren't growing back in. I'm mainly worried about hands and feet since those areas seem to get it the worst.
Any advice is much appreciated!
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Italychick- yes, I have asked them to slow the infusions down to the slowest possible. I'm in a different situation, aware that I am not holding down a job, or taking care of children and a husband (who should be, in theory, taking care of the patient!)
I am just me, so I don't mind that my spa days last a bit longer. With my TC plus all the other stuff, (2 bags of fluids, emend, Aloxi and steroids) I have been there between 7 and 9 hours every time. But I have been very lucky with SEs. I don't know if it has anything to do with it. But I was quite nervous about the infusions, and sometimes felt flushed, like something was going to happen. So they cheerfully just slowed it down.
An update on the cookie and soy situation. The only soy is a small amount in the chocolate chips. Not all of her recipes have chocolate chips, for example Theresa got oatmeal raisin walnut, and there is orange cranberry pistachio.. So you can avoid the soy if you need to.
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Bekah, did they not give you Benadryl before the Taxol even started? I get it every time. I did have a small reaction the very first time regardless and none since then.
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so awesome Katy!! Oatmeal cherry chocolate chip?!?!!! Yes please! Yummmmm
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HOw sweet of both the lady and YOU, Katy!
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What a great deal on the cookies Katy! Many thanks for thinking of us all.
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Molly - I don't know if Benadryl was in the pre-meds (shame on me). I know they gave me some Aloxi and Ativan because I came in a little nauseated. I had taken the dexamethasone the night before and morning of 'as directed' so they didn't put any in the pre-meds. But I don't recall Benadryl being mentioned as a pre-med.
They said next time they will give Benadryl before the Taxol and if I still have a reaction then switch to Abraxane. Makes me think there was no Benadryl in the pre-meds?
Bekah
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They told me the Perjeta would cause diarrhea starting around day 3. It hit me at 24 hours...yeah - that sounds about right for me! On to Immodiun and hopefully if can stay ahead of it.
Bekah
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I see a cookie order in my near future - thanks Katy!!!
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Theresa, I've asked them to slow down my infusions since I'm cold capping and they haven't had a problem with it. I'm going in for number 4 on Monday and I'm having this strong "I don't wanna go!!!!" Feeling. Complete with kicking screaming and crying, like a toddler having a tantrum. Okay, not THAT bad, but you get the idea.
Lashes and brows are thinning for me too, but I see a few hairs growing. My leg hair is starting to come in patchy, too. Fingers crossed the head hair comes back soon. My bald spot and thin hair isn't fun.
Enjoyed the 80 degree weather yesterday at the beach, only to miss a doctor's appt. oops!
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Bekah - UGH, sorry! I was unaware that is a standard SE with Prejeta? Why does the list of SEs have to be so terrible??? Hope you feel better!
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