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Starting Chemo in July 2017

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Comments

  • proudtospin
    proudtospin Member Posts: 4,671

    well your comments on liver levels is reasurring to me. I do take tylonel when needed as i have a cdumb allergy to nsaids, all of them so it is tylonel or nothinbg

  • JenRuns
    JenRuns Member Posts: 299

    Thanks for the input gals ....

    Travelhound: this week is going OK ... I think it's a hard one ... I'm mentally "done" (woo hoo, last infusion) but really you're not, because you've got a week (or more) of the side effects. They're pretty bad (hands/feet numb/tingling, tired), but I'll chug through.

    Definitely will check out the hair thread ... I have an appointment on Monday with my naturopath. When I started all of this, he said I could take Biotin when I was done with chemo to help spur hair/nail growth. I picked some chewables up at the nutrition store (they were on sale, and I'm a sucker!), so I plan to see if those are OK with him. My girflriend also has a lash boost product she's sending me ... she's a survivor. Not sure what it is yet.

    Hope everyone has a great, SE-free (ha!) weekend!

  • travelhound
    travelhound Member Posts: 63

    Jen, be aware that different lash boosting products work on different pathways.. Before chemo I was using Babe Lash, which delays hair falling out. It worked very well before chemo and I kept using it during chemo until my lashes started falling out. So it will not help at this stage. The Latisse works by stimulating hair growth, which hopefully will be the way to go. I'm going to talk to my plastics guy about it when I see him in 2 weeks. I know his office sells it.

  • runnermum
    runnermum Member Posts: 346

    I too have started on a multi vitamin with biotin, a vitamin for skin, hair and nails and started using Nioxin shampoo and a lash boost product. Hair is growing, nails look good and my skin is starting to look better. But eyelashes and eyebrows are still sparse. My skin got so dehydrated during chemo. It really took a toll on it. I have always had oily skin and now it's so dry.

    A weird thing happened this week...I woke up about a week and half ago to a tender/ sore spot on jaw. I had appts with my radiologist, Gyn Dr and MO the past 10days so I brought it up to all of them. They all felt it and said it felt like a swollen gland and said we could leave it and it would resolve on own. Well yesterday morning I woke up, it was visibly swollen and more painful. Called MO and my dentist. The consensus is that I have a stone in one of my salivary glands. Been having to suck on lemon slices, sour hard candy, up my water intake etc and it should dissolve on own. It can happen with a dry mouth and I have had an extremely dry mouth since chemo ended and I wasn't as good about drinking my water after chemo ended. So now I am bald with little to no eyebrows and eyelashes and a swollen lump on my lower cheek! I told hubby the fun never ends!

  • Leatherette
    Leatherette Member Posts: 272

    Indeed, the fun never ends! I hope the sour candies/lemon help, Runnermum!

    Here's my fun for today.....

    I went in for my first herceptin-only infusion today. After my port was accessed, I had a significant squeezing feeling in my chest-right in the middle, under the sternum. And I could breathe, but taking a deep breath made me cough. This went on for 45 minutes, then got progressively better for 15 minutes. My oncologist and the oncology nurses were concerned, and wanted me to not get herceptin and go down to urgent care.

    Blood tests, EKG and chest x-ray later, no problem, and I felt better.

    Has this happened to anyone, and/or does anyone have a "smart guess" as to what was going on?



  • PauletteK
    PauletteK Member Posts: 1,279

    Runnermum- I had infection in my salivary glands before (not chemo time) and doctor gave me antibiotics and it cleared up fast. I do have dry mouth also, so I better drink more water.

    Leatherette - sorry I couldn’t help much, I didn’t have this problem. Only had heart beat increased. Glad to know you have no heart problem. Send you prayers.

    Hope everyone have a great weekend.

  • Teese
    Teese Member Posts: 355

    travel, it's done, I'm so glad for you. Hang in for this last round of SE, it'll pass quickly then recovery! Woot!

    Paulette, I was just so worried over my hair because so many had regrowth during Taxol, but if mine finally started yours will too. Yes, don't think about it and stare at your scalp like I did. Just move on and one day you'll look in the mirror and notice it. Be smarter than me. :-)

    Proud, my liver enzymes went up and my MO watched them carefully, she's rechecking them in Jan and if they're still up I'll have a liver scan. I'm not going to stress over it.

    Jen, my MO wants me to keep my port, im going to discuss it with her in Jan, I'd like it GONE!

    Runnermum, I knew someone with tat once, I believe it resolved quickly, hoping the same for you, fun times never end.

    Leatherette, that incident with the chest squeezing was scary! I think my anxiety would have gone through the roof and then they'd have had to decide what was a panic attack and what was the symptoms related to the port. You sound like you handled it well, were you able to get your herceptin infusion?

    First week of rads done, 4/30 completed. Decorating this weekend and want to finish up shopping next week. I want to have everything done by the 15th when my daughter comes home from school.

    Have a good Saturday all, hugs and prayers all around

  • Leatherette
    Leatherette Member Posts: 272

    No herceptin-MO said it was not a problem to miss it once.

    I think it may have been esophogeal spasms. The urgent care doc said it may be that, and once I got home I remembered it happened to me once so long ago that I didn't remember the symptoms. At that time, we were worried it was a heart related event. With the number that chemo does on the entire digestive system, it's plausible.



  • PauletteK
    PauletteK Member Posts: 1,279

    Leatherette- wow that remindered me that my father had that problem and he thought it was heart problem also. Glad you’re fine!

    Teese - I’m one of those people who don’t have much hair, so it might take me longest to grow my hair 😕 but I saw some nasal hair start coming out .... 🤞I got some Christmas shopping done the other day, I will get few more gift cards then I finished my Christmas shopping. 🙌🙌🙌

    I really missed a cup of good coffee .... God please give me my coffee taste bud back .....


  • Teese
    Teese Member Posts: 355

    Paulette, I know, when I was pregnant I lost my taste for coffee and it took forever to get it back. Hang in, probably by Christmas you'll be sipping your morning coffee again.

    Leatherette, I'm glad you've figured it out. Just another GI issue to deal with, good grief! Do you know what causes it?

    Jen and Travelhound, thinking of you guys, hoping you're on the upswing and starting to see the SE beginning to fade. The good days are just around the corner.

    So today I have a rash under the scar and it's driving me nuts. I'll have the nurses look at it tomorrow before my rads, sigh, just another thing to deal with. Using hydrocortisone and benedryl with no relief.

    I'll keep busy today with the last of my decorating and getting my wrapping station set up. Plus it's a real pleasure walking now. Truth be told, I walked through chemo, but really it was a chore many days, well, most days. Now with more energy I enjoy looking around and not thinking about putting one foot in front of the other and just trying to push through. With the SE from chemo in the rear mirror it's become easy to forget about cancer quite a bit.

    Have a good Sunday, hugs and prayers

  • JenRuns
    JenRuns Member Posts: 299

    morning all.. boy, it's hard being "done" (mentally and infusion-wise), but still managing SEs as any other week. Knowing it's the last weekend if it though.... that helps. I got my Christmas stuff up, with lots of help hauling he boxes around. Today will be food prep for the week (I need to get moving in losing this damn weight I gained!) and decorating the tree...

    I'm looking forward to my coffee palate coming back! I've had one or two, here and there, the past few weeks.... just not the morning thing yet. (And I did just buy a huuuuge bag of my favorite loose leaf tea, so I need to make a dent in that first!)

    Here's hoping for an SE-free week!

  • proudtospin
    proudtospin Member Posts: 4,671

    interesting, i lost my coffee taste buds for short time but they came back and been drinking my usual cup of joe

  • PauletteK
    PauletteK Member Posts: 1,279

    Teese - praying for your rash , how many radiation treatments did you do?

    I’m having a layback Sunday, we decided not put up a tree because the price for Christmas in California is so expensive this year. It costs up to $100+ a tree. According to News we have shortages of tree. I finally started to do some cooking and I haven’t cooked for awhile so I’m a little rusty.

    Jen - give yourself a week or two you will be back to your normal slef. I have stopped my Ativan and melatonin. Even I got my appetite back I haven’t gained the weight I lost.

    Proud - enjoy the coffee for me, I will try my coffee in couple weeks.

    Ladies, have a good Sunday!


  • lojo100
    lojo100 Member Posts: 92

    Paulette - The coffee taste will come back (I say this as I'm sipping my afternoon decaf!).

    Teese - I hope the rash goes away soon. I can definitely relate to how annoying it is to have an itchy rash!

    JenRuns - The being 'done' moments are so weird, at least for me. I hope your SE's go by quickly so you can start to feel better each day and know you're not going back for another infusion!

    I'm now a little more than 2 months PFC and 3 weeks out of radiation. Port comes out this Tuesday and then tamoxifen starts Wednesday. I feel like the port coming out is really my 'done' date, for some reason. Mentally, it will be nice to have it out of me.

    I'm really looking forward to having a couple weeks during the holidays with no work, no treatment, and the ability to do things around the house and think about what my 'new normal' will look like. The world looks different on this side of things, in a GOOD way. Some people around me say things like, "Yay, you're done, you look so good and you're getting back to yourself." They mean well, but I realize that I'll never be that person I was before diagnosis, and that is OKAY. I actually don't want to be that person, I want to be the me that went through all of this, survived it and sees the world even more brightly now!

    Anyway, I'm glad I have my most favorite time of the year to get back online and start my new normal! Happy

    I hope all of you are doing well!

    -LoJo

  • JenRuns
    JenRuns Member Posts: 299

    beautiful attitude, LoJo. We'll never be the same... I just hope to come out a better person.

  • Teese
    Teese Member Posts: 355

    Well, my rash is sure a doozy, but I think it's better this morning. I'll show it to the rad nurses and then we'll see.

    Jen, the 2 weeks after last chemo are psychologically weird to be sure. They were my worst two weeks on Taxol so I felt ba. Very hard to be "up" when feeling bad. My husband was so elated it was over, he kept commenting how I must be so relieved, I didn't have the heart to tell him how I really felt, a little let down. Once I passed the two week point things got better quickly.

    I've had a real surge in energy this past week, walking the same route I did before all this began is the big one. Been working up to that for it seems forever. Fixing dinner each night, I never had the energy even on the best day, so that's a nice change. Dropped 8lbs which always feels good. I'm sure I have crummy days ahead as my skin worsens, but I'm enjoying today. Today will be 5/30 at rads, hope the week flies by like last week.

    LoJo, life has changed for us all, but I absolutely love everything from my old life that I've gotten back. I echo what you all have said about changes we've made for the better. I've changed my priorities and have learned to let things that aren't important go. I'm not an uptight person but I had what I called "standards" that I have just dropped. I'm happier without them, and so is everyone around me.

    Well I gotta get going. Have a good day, hugs and prayers.

  • PauletteK
    PauletteK Member Posts: 1,279

    Teese - I echo what you said, I didn’t have energy to cook when I was doing chemo, finally I have energy to cook and it feels good. But my DH worried that I cut my hands so he doesn’t want me to do any chopping.

    Yes life have changed to all of us, I don’t know what would my future will be, but I know I value each day and I would be more compassion toward other. After these few months, I learned to slow down and trusted God. Will do some soul searching and be helpful to other.

    Jen, the first week of PFC was tough, emotionally I was pumped up and I wanted to do so much but my body will get tired every afternoon. After the first week, things were slowly got better each day. I still have SE but I enjoy each day. Last night I finally can sleep six hours straight.

    It’s Monday, wish everyone have a good week. ❤️


  • lojo100
    lojo100 Member Posts: 92

    Jen - Also, just to give some hope to your first week or two PFC... the day after my final chemo I got my rads mapping done, and then I went to the Tom Petty concert (Boy, am I glad I pushed myself to go... had never seen him live, and of course, will never have the chance again). Not going to lie... it was a push. I sat for much of it, but, I did it! I did take a nap that afternoon to help push through the night. At 11PM, he was done with the main set, and we did leave at that point. I couldn't make it to the encore, but I saw every song I'd hoped to, and so did DH, so off we went.

    So, I guess I write this to say... if you have something you really want to do and it lands during this time, go for it.

    Oh, and yes, I did pay for my fun evening. I was EXHAUSTED the next day and slept for most of it, but it was so worth it!!

    Here's to the next phase for all of us! I hope all of us take a moment to celebrate how amazing each of us are! :-)

    -LoJo

  • JenRuns
    JenRuns Member Posts: 299

    thanks all :) I've been pretty stubborn this whole time, doing what I want and just figuring out how to manage it. I suspect there will just be a day when I realize, hey, I'm not exhausted ;)

  • Leatherette
    Leatherette Member Posts: 272

    Okay, so I'm not crazy-there is a PFC letdown. At almost 4 weeks PFC, I think it's clearing. I think it was partly what Paulette was saying, where you want to do so much, because this was the time you were waiting for, but you still have SEs, and cumulative effects. What came next for me was extreme anxiety that I was not ready to join the "real world", and that I'd be expected to.

    Like I said, feeling better now, and my hair is growing FAST. And dark. I may be able to go without a headcovering by the new year! I do notice a little bit of a receding hairline, though.

    Teese, so sorry about your rads skin burns. Sounds really rough.

    LoJo, so great that you got to go to a concert! I hope to do that soon. I have been afraid to plunk down money for any type of planned event, because things have been so unpredictable.





  • PauletteK
    PauletteK Member Posts: 1,279

    I’m happy that I have more energy now, on top of my 40 minuets daily walk, I got to do some shopping today and spent more than an hours in Costco. During the end of my chemo journey I didn’t have energy to do all these errands. Once I got home, I did my Le pump and I took my afternoon nap! Leatherette- I don’t like to stress myself now, because my sister breast cancer recurrenced after she stressed herself out from works and moves. At least that’s what we believed in. So my family always remindered me.


  • Teese
    Teese Member Posts: 355

    Had 6/30 rads today and saw the RO, he said the rash is from rads and not an allergic reaction to the lotion. So, he's added silvedene cream. It no longer itches and is less red and bumpy so a little improvement. I think I'm in for a real mess, but it is what it is.

    I went to the mall to do some shopping, figure I better finish things up in case I get too sore from the rad burns.

    Love having my energy back, and hearing how everyone is progressing. Jen and travelhound it will happen and it seems to happen quickly.

    Leatherette, wow, your hair is growing fast, so excited for you. I'm 6 weeks PFC and fuzz just getting visible, but I'll take it.

    Paulette, I wish I didn't like to cook, might weigh less.

  • PauletteK
    PauletteK Member Posts: 1,279

    Teese - I’m sorry to hear that your skin is so sensitive but glad it is not itchy now. Just keep in mind it is getting closer to finish each day. Because my lousy cooking, during chemo was tough, that’s one of the reason I lost weight.

    Will start my radiation this coming Thursday, I am glad I got my Christmas shoppping done today. I enjoyed my shopping in Trader Joe today, so much to see, all the goodies ..... I am so good. I didn’t pick up anything for myself. Oh yea, I love my energy back, praying I won’t lose it in radiation.

    Hope everyone are having good week!



  • sunnyjay
    sunnyjay Member Posts: 143

    Hello ladies, life has been kinda busy lately! Thanksgiving came and went, and now we have 19 shopping days left til Christmas! Since I work full-time, I can only shop on weekends but I am not stepping foot into a mall on the weekend. Haha So I'm going the online route this year. Although, I actually found that going to Macys an hour or so before they close is less busy. :) I wanted to exchange some stuff I bought online, so I took my chance and went later in the evening, and there was no line at all!

    I'm glad to read you all posting about your exercise. I have been walking during the weekends, but during the week it's been hard to get it done. I bought myself a fitbit and just set it up last night. Hopefully this will get me walking with the reminders throughout the day, or at least get me up from my desk.

    I just realized I finished 19 of 28 rads sessions today! I haven't had any skin SEs other than a little tan in the area under my armpit. Hopefully, it doesn't get too bad for the rest of the sessions... My lymphedema has not gotten worse like my RO said it might get, but I did notice last night that my arm was a little more swollen than usual. But after I did MLD, the swelling went down.

    I just wanted to pop in and give you a quick update. I haven't gotten a chance to catch up on everyone's posts, but I will do that soon. Hope you all are well!


  • Teese
    Teese Member Posts: 355

    sunny, uck, I guess now there's 18 days, now I'm truly running out of time, good grief. You sound great, you'll be finished in no time. Today is 7/30 and this morning my rash is less red, more pink. Praying it improves.

    Paulette, starting rads tomorrow, woot. How many are you having? I know you're a little nervous, I think we all were, but even with my issues I'm doing well and far easier than chemo.

    Jen and Travelhound, hoping your SE turn a corner today.

    Have a good one

  • proudtospin
    proudtospin Member Posts: 4,671

    well heading to a pet scan today, onc wanted to review were i am at regarding my taxal, seems my liver levels are rising or something

    No food or stuff till after test which is 130, yuck

  • runnermum
    runnermum Member Posts: 346

    Proud you are on my mind and sending positive thoughts and prayers for good pet scan results.

  • proudtospin
    proudtospin Member Posts: 4,671

    runner, thanks oforp your thougts

    Pet sca n over epect results friday

    Home and hungry

  • Tpralph
    Tpralph Member Posts: 281

    proud, praying for you from afar...... :)  well wishes

    Goodluck tomorrow paulette, tell us all about it

    Teese, sounds like that fricken rash is getting better. what are you putting on it? At what number of rads did it show up?

  • PauletteK
    PauletteK Member Posts: 1,279

    Proud, best wishes for your PET scan result!

    Teese - I’m going to try to use the Boje Chill Towel as Willow suggested hope that will keep red skin away from me. Hope your skin will get better.

    Yes tomorrow will be my first day of rads, I didn’t sleep well last night already, so I might take an Ativan tonight so I have enough energy for tomorrow 1 pm appointment.


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