Starting Chemo January 2015

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  • Cherylfg
    Cherylfg Member Posts: 97
    edited September 2015

    mysunshine48-My CEA has consistently been between 6-7 and my MO also recommended a colonoscopy. She wasn't too concerned and said I could schedule it in a few months when I feel better. Did your MO say anything else?

    dimccleland-Good to hear from you! If it were me, I would continue with Herceptin. Yes, I feel like I'm never done.

    Marjo-do they know why your liver enzymes are elevated? I remember that being a concern while I was on Taxol but I don't know how long it lasts after. And, I agree about doing everything possible and following our MO's advice. I've been a big believer in that since the beginning but for some reason, hormonal therapy has scared the pants off me since it was first mentioned.

    Well, I saw my MO today and I'm officially in menopause. I'm only 40 so it feels a little weird but I was also diagnosed with cancer at 39 and that also felt weird. The good news is that because chemo put me in menopause, my MO doesn't have put me there now. I'm going to take Letrozole, an AI. Is anybody else on it? I read the SE and they sound very similar to the ones I've been experiencing, hot flashes, mood swings, sleeplessness, joint pain, from menopause. My tumor was 95% estrogen responsive so this is the best thing I can do to keep it from coming back. I'm grateful to have it.

    Cheryl

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  • mysunshine48
    mysunshine48 Member Posts: 1,480
    edited September 2015

    Cheryl, Thank you for replying. No, my MO did not say anything else, just to have the colonoscopy. I have also had a consistant cough since starting chemo in May, so I am having an endoscopy as well. Iin fact, the procedures are this afternoon. I had to do a split prep.....half last night and the rest early this morning. I am just concerned because a lot of people do not get these tumor marker tests and they cause me great anxiety. I am doing it now as I am having expander exchange in two weeks and laying on my side might be more difficult after that.....for awile. I guess we have to check things out. I hope the CEA doesn't mean anything.

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  • spookisgirl
    spookisgirl Member Posts: 96
    edited September 2015

    Congrats to Lara and Marjo on finishing rads!

    6 more left for me including today. My skin is doing ok, but my back suddenly got 'sharp' in the shower so I am wondering if it is breaking. Ended up with a UTI so that had me feeling pretty miserable, but got some antibiotics for it. I have been feeling nauseated and right now we can't tell if it's the rads or the UTI or both. Sleeping A LOT (12-14 hours a night plus naps).

    I can't believe it's September. It all seems very surreal that I have been dealing with this so long and am still dealing with it. 1 more week of rads, but then I start Tamoxifin a week later, and I have my surgery end of November. It does seem endless at the moment.


    Jenn

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  • mommacat4
    mommacat4 Member Posts: 215
    edited September 2015

    Noor46, thank you for the link for the soft study. It enlightened me.

    I wanted to update everyone. I had my hysterectomy. They did it robotically. They made 5 small incisions on my abdomen. All but 1 has closed and is healing like they are supposed to. The one is very deep. I have to clean it out every day and pack it with a medicated strip and bandage it back up. I don't know if it will close with this activity.

    This surgery has wiped all my energy. I can't believe how this surgery is making me feel. I am a bit depressed as well. I am hoping that after my recovery period I will be able to go back to work and hopefully the depression will go away.

    I have an appointment later this month with my med onc and he will probably put me on the 5 year pill. It won't be tamoxifen because I had the hysterectomy. It has to be another medicine but I don't remember the name of it.

    Take care ladies

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  • mommacat4
    mommacat4 Member Posts: 215
    edited September 2015

    oh, I am sorry, I forgot to mention that I got the pathology report from the hysterectomy. They got all the cancer. It was all contained in the uterine lining so I do not need any more Chemo or radiation for this. (Thank God) I was afraid I might need it.

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  • Tennisfan
    Tennisfan Member Posts: 114
    edited September 2015

    Cat, what a relief it must be to hear no chemo no rads. Listen, I had menopause symptoms 2 days after ovarian removal. Your depression could be caused by your hormonal changes - it is quite a drastic change. Hang in there and also talk to your doctor about it. Sometimes a little boost to help us cope with the immediate may just be what's needed to ease the transition.

    I am the energizer bunny normally but I am starting to slow down noticeably (to me) so I can hardly imagine how hard it must be for you!!!

    Apparently my liver enzymes are a tad high so off to abdomen echo I go. I am sure it's nothing but better safe than sorry.

    My skin peeled off under my armpit but it's already dry so I feel very lucky that it was never "raw". I am just hoping I won't have a scar but at this point... Oh well ;0)

    Moving tomorrow - fingers crossed all will go well - the last two weeks have been epic lol. I had to go sleep at my mum's for two weeks to add to that but it was the silver lining (forced to eat good home cooked meals and going to bed early.). I felt like a big 48 years old baby being pampered!!!

    Speaking of which - first pedicure and brows tweeezing in 9 months. My poor toes look like hell. Not complaining though. Syria and many more things are way worst, including some SEs you guys experienced. I did save this little luxury for a special day which I decided is TODAY.

    Thinking of all you guys on this rainy sunday.

    Marjo aka Tennisfan


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  • mommacat4
    mommacat4 Member Posts: 215
    edited September 2015

    Tennisfan, best wishes with the liver enzymes. Praying nothing is wrong there. And take advantage of that good home cooking. My mother has passed away as has my father so love and receive the pampering while you can. Thank you On the advise about the depression. I will ask my dr.

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  • Cherylfg
    Cherylfg Member Posts: 97
    edited September 2015

    Cat- I'm so glad they were able to remove everything and you don't have to go through chemo and rads again. I've been thrown into meno from chemo and it made me feel like a crazy person. I'm normally pretty patient with my kids but I found myself snapping at them over little things. It's getting better but I did talk to my MO and she said they have meds to help.

    Cheryl

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  • Cherylfg
    Cherylfg Member Posts: 97
    edited September 2015

    Also, Cat, my first c-section incision reopened and I had to clean it and pack it like you are doing. It was a pain to take of it but it did close.

    Cheryl

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  • Noor46
    Noor46 Member Posts: 68
    edited September 2015

    Tennisfan, I hope everything went well when you moved in your new appartment, but most of all that your liverenzymes go back to normal or at least it is nothing.

    Jenn,I saw you where diagnosed the exact same day as I was and we also finished treatment about the same time. Yesterday was my last rads!

    Started tamoxifen today, but just one pill a day is easy (hopefully). I read the list of possible SE, quite scary!

    Cat very sorry to hear about yet another cancer! How horrible. I sometimes can't stop thinking about recurrence or mets, since I had a very agressive one. But I will say 'had' because I'm planning to stay around for a long time and beating the odds.

    Have a nice day everyone!

    Noor

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  • spookisgirl
    spookisgirl Member Posts: 96
    edited September 2015

    Hi all,

    I finished rads last Friday, and this week my skin is pretty miserable. It has separated into 3 small open sores (with what looks like a 4th coming) under the breast and is raw under the arm and at the collarbone. I am just trying to keep the creams on the spots as much as possible and hope I don't get an infection. No more bras for me for a while. Taking tramadol at night to help me sleep because the sheets on my skin wake me up with pain.

    I am starting Tamoxifen on Monday, and hope it goes easy on me. I am still getting regular hot flashes from chemo, so not looking forward to those perhaps ramping up more with the Tamoxifen.

    On a good note (hopefully, if I get my energy back), I am going to compete Oct 17th in Vancouver. That's a significant date for me as it is one year exactly since I found my first lump.

    Surgery scheduled for 26 Nov....hope the time passes quickly.

    Jenn

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  • dimccleland
    dimccleland Member Posts: 59
    edited September 2015

    Hey ladies ... just checking in to say hi :-)

    I had my first dose of Herceptin today - one down seventeen more to go. Pretty uneventful with just a little nausea and a headache afterwards ... early night for me tonight :-)

    Have my first radiation appointment on Sunday - think it will just be the CT simulation and prep and that I will start the treatment during the course of next week.

    One small concern that has cropped up during the week ... have noticed a lump on my sternum - not sure if it's anything to worry about or if it's just everything settling down after my UMX - in any event, will check it with my MO when I see her again.

    We have a long weekend this weekend so looking forward to a few relaxing days.

    Stay strong x

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  • PMR53
    PMR53 Member Posts: 452
    edited September 2015

    Hi Chemo Sister! 

    How are you all? Please check in if you can. Thinking  of each and everyone of you !  Living a new normal. Finish Herceptin in December. Getting UNI MX October 7. I sincerely hope you are moving beyond cancer and feeling well. 

    PMR53

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  • RV6gal
    RV6gal Member Posts: 331
    edited September 2015

    Jenn - sorry to hear about the raw skin areas. I had a patch about 4 x 6 inches that was really bad. I actually put bandages on my shirt to keep it off my chest. It was such a large area and tough to keep covered otherwise. The good news is that it heals faster than you think it will. I wish you a speedy recovery from that! Good luck to you on your upcoming competition as well as your surgery! I hope for your sake it comes and goes quickly.

    dimcleland, I hope that the sternum issue is related to surgery and heals quickly. I have some knots in my back and neck which I believe are from the frozen shoulder but I have to admit that these little things tend to bother me now more then ever before.

    tennisfan - wishing you good results from the abdomen echo! Hope your move went smoothly too!!

    mommacat4 - Hope you are well on your way to healing and feeling better.

    PMR53- Positive thoughts for an easy surgery and quick recovery as well.

    Wishing everyone well. I am doing good (I think)! Some days I feel quite tired but I believe I am getting stronger week to week. I started aqua fit at the beginning of September and it has made a big impact on my energy levels as well as my frozen shoulder.

    I am starting my six month of tamoxifen and I think the SE's have lessened over time too. Just wanted to put that out there for those just starting! I hope you don't have any SE's but if you do, it does get better.

    I returned to work on Sep 14th and so far that is going well also. I am lucky that my youngest just turned 18, and got her driver's license so there is really no running around for me to do unless it is for myself. That is nice for a change as well.


    Take care!


    Wendy




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  • mommacat4
    mommacat4 Member Posts: 215
    edited September 2015

    Hi ladies, just checking in.

    Thank you cherylfg I appreciate everything.

    Jenn, good luck with the dance and the surgery. My recon surgeon won't even do my exchange until 6 months after my last rads (which was July 31st ) but that puts it end of February maybe into March 2016 before I can get my exchange done.

    Wendy, thank you for the confidence. However, I am not taking tamoxifen. I have to take something else because my overies have been Removed now. I can't remember the name of it.

    I am still having some depression, that one wound is still open but not as bad. I am getting hot flashes more frequent and they are stronger than before. I also have mood swings a lot. I get agitated super easy.

    Everyone have fun and take care.


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  • LCH033
    LCH033 Member Posts: 83
    edited October 2015

    Hello....I know, I've been gone forever it seems.

    Tennisfan; happy to hear you are finished with RADS; I finished mine August 26th and I was pretty miserable and wore alot of baggy t-shirts and aquaphor. They gave me 2 different creams and they helped where it was burned pretty bad however the aquaphor saved my skin I think. I am still doing the Herceptin, that's until April next year. I'm having little heart palpitations, however I had those years ago when I had mitral valve prolapse; however it cleared up and they stopped; now they are back. Ugghhh!

    I have my big reconstructive surgery on December 16th, and I am very much looking forward to that. Maybe feel a little more "normal"; or at least my New normal.

    I don't get my "cancer free" card until year 8 or 10 due to "my type of cancer"; and they are watching me pretty close these next 2 years. It makes me nervous and very aware of any changes like bone pain or headaches or lumps.

    I am living each day to the fullest as we are never promised tomorrow. I am in a Healing through Art Class and I absolutely LOVE it!! We are finishing up this week and I am going to miss it. Really want to do some voluteer work at Plano Oncology; I want to give back and hopefully help others with their battle or journey or whatever they tag it. To me, it felt like a war.

    Here's a picture of my almost finished canvas from my art class; It will get hung up at Plano Oncology for others to hopefully get something from or relate to. I feel so connected to these women and the cause; I want to be a part of it and do good positive things to help others.

    Tennisfan; enjoy your 2 weeks off and good luck with your move. I pray the abdominal scan comes back clear and all is well!

    HUGS Ladies!!

    image

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  • spookisgirl
    spookisgirl Member Posts: 96
    edited October 2015

    Hi all,

    Been a while since I posted. I managed to get all the radiation skin problems sorted out....just in time to get shingles in the same place! I don't know if anyone else has had problems with shingles other than beachbum but they are painful!! I have been on 2 types of pain meds constantly for more than a week. Luckily, we caught it in time that I could start anti-virals to shorten the duration and finally today they kicked in and I feel I can start cutting back the pain meds. Worse thing about that is they must be taken every 4 hours like clockwork to work so I haven't had more than 3 hours of sleep straight since Saturday.

    Anyone have recommendations for laxatives other than senokot? Because of the pain meds I am not pooping even though I have been taking senokot regularly.

    Really don't need another reason to feel lousy right now lol.

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  • Beachbum1023
    Beachbum1023 Member Posts: 1,417
    edited October 2015

    Spookisgirl, I am so sorry that you have shingles! Painful for sure, took a while to go away, and I still have dark brown marks where they were. Almost looks like the skin is bruised. But trying to wear clothing over them, that sucked. I wish my Doctors had told me about getting the vaccine, BEFORE I got them. Now I have to wait 12 months, so second week of July for me. Like we need another side effect! And they can come back. I hope they are gone soon! Take care, Cheryl

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  • Italychick
    Italychick Member Posts: 2,343
    edited October 2015

    spookisgirl I use magnesium, helps me every time

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  • LCH033
    LCH033 Member Posts: 83
    edited October 2015

    I got shingles during AC chemo and it sucked! I got on meds and kicked it in about a week. I've had them before so I knoew what it was and got a perscription called in asap. So sorry to hear you are dealing with them now!


    Lara

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  • PMR53
    PMR53 Member Posts: 452
    edited October 2015

    Spook- I drink prune juice and drink a tea found at most stores called Smooth Move before bed. 

    I am sorry Beacbum, LC and Spookisgirl about damn shingles. What caused them? 

    I am 1 week postop R MX with TE. Glad to have this in my rear view mirror. 

    There is A 9 part docuseries called : 

    https://go.thetruthaboutcancer.com/

    I am going to watch it ( episode 2 ) on Breast Ca. It's Internet only. 

    Take care all!

    Patty

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  • spookisgirl
    spookisgirl Member Posts: 96
    edited October 2015

    Thank you all for the tips and support.

    Apparently being a cancer patient, and especially having radiation makes you more likely to have shingles, but no one knows exactly what causes it--except that you have to have had chicken pox previously.

    It seems to be getting better, using much less pain meds now, but the blisters in the rash are starting to 'pop' leaving things raw around my back. Since I cut back on pain meds, the constipation seems to have let up, thankfully.

    I have a competition tomorrow--part of me can't believe I am doing it, but the other part is really glad I am.

    Nice to have something other than cancer and my upcoming surgery to focus on.


    Jenn

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  • PMR53
    PMR53 Member Posts: 452
    edited October 2015

    Jenn- how did competition go?? I am glad to hear your shingles are healing. I know how much you love to dance and this can get your mind off all this cancer crap for a little bit!! Yea!! You have been so strong. Good for you. 

    Patty. 

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  • spookisgirl
    spookisgirl Member Posts: 96
    edited October 2015

    The competition went really really well. I am truly amazed I was able to do it.

    Here is a link to my solo performance, which I dedicate for all my sisters fighting:

    https://www.facebook.com/spookisgirl/videos/101560...

    Jenn

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  • PMR53
    PMR53 Member Posts: 452
    edited October 2015

    Bravo Jenn!! 

    You are amazing!! So strong and graceful. You looked amazing and so did your partner! A very appropriate song too!! Truly inspirational and brought tears to my eyes! Thank you for posting Keep up the fight and the recovery! 

    Patty

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  • RV6gal
    RV6gal Member Posts: 331
    edited October 2015

    Jenn, that was simply wonderful! Bravo for sure!! Speedy healing with the shingles.

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  • dstar
    dstar Member Posts: 72
    edited October 2015

    Hi Chemo Friends-

    So good to read all of your posts. I went awol for a while when I was having rads. Time consuming and exhausting. It is over now, finished July 24, had a huge, raw burn for 4 weeks because of the need to radiate the entire chest wall (large tumor, Mx) and kill all the cells in the lymph nodes in the axilla, along my neck and clavicle. I went into the Radiation Center and said "nuke me!" although I was terrified of rads. Loved the techs there, great sense of humor. I worked from home and went in to work as much as possible but had to rest a lot when I was healing from the burn. They gave me a prescription for 60 Vicodin and said, "let us know if you need more". Yikes. That is when you know you are going to be a hurting unit for a while. But I hope any wee, malingering cancer cells were incinerated in the blast. Bastards.

    Having an Mx on right side in early Dec. to take care of BRACA2 risk. No oophorectomy for me for a couple of years, my risk is only 2% right now so I am waiting to heal a bit after talking to the OB-GYN. Taking care of the highest risk first.

    Gonna start taking Tamox and see if I can tolerate it. September was a month of healing but I was back at work full time and sometimes overtime. Have to put my foot down when they want me to work like I am not recovering from cancer treatment!!! Still working a lot from home so mostly it is OK. A girl's gotta eat. Have numbness and weakness in my legs/feet and arms/hands from the Taxol but it is getting better. Yoga, massage and acupuncture appts are on my calendar. Able to socialize a little now. I have a lot of sticky-uppy hair. Grew in white initially so I went platinum. I will post a photo. My skin is wild looking where I had radiation. Take extra care to keep it covered and wear sunscreen, we are all at risk of getting skin cancer in radiated area.

    Going to sleep now. So glad everyone is moving forward even though most of us are coping with lingering SE. Still better than AC! Am I right? My test for everything now is to measure it against chemo, if not as bad, then I try to take a deep breath. Sometimes my mouth still tastes like metal. Ugh.

    night. sleep well, dstar (dana)

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  • PMR53
    PMR53 Member Posts: 452
    edited October 2015

    DStar- just saw your post!! Glad you made it through Rads and are healing. It's a slow process but it sounds like you are going in the right direction!! It's funny I measure procedures etc in terms of chemo also. My MX 2 weeks ago with A TE put in .. Not as bad as chemo. The drains suck are annoying and itchy. I have 1 still in. Hope it comes out Friday. But again not as bad as chemo. Haha. Continue to heal and rest when you can. Jump on Surgical site thread  for December. Or any that are up. I found it helped with MX questions and concerns. Just like our chemo thread. 

    Take care Dana!! PM me for any MX concerns. It wasn't as bad as I thought it would be. You are almost done!

    Patty

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  • jlstacey
    jlstacey Member Posts: 277
    edited December 2015

    Hi everyone,

    I'm assuming that none of us has posted because we are all living life again? I hope so! I've been doing really well and have had good energy. Today is terribly gloomy here in Detroit, so I've been lazy.

    I started physical therapy a couple weeks ago. I had some cording from lymph node removal and a lot of tightness in my upper body. I didn't even know I was tight. My PT does myofascial release so that has been interesting. I'm also preparing for my DIEP Flap recon in February so I'm back on here as I enter this next phase of all this.

    How are you all doing? Anybody else still have severe chemo brain? Chime in with an update!

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  • spookisgirl
    spookisgirl Member Posts: 96
    edited December 2015

    Hi all,just wanted to drop in to say I am now almost 3 weeks out from my double Mx with DIEP reconstruction. So far so good and all the pathology was negative. So I am officially cancer free! Next step is tamoxifen....Jenn





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