February 2011 chemo pals

1…8586878890

Comments

  • crog234
    crog234 Member Posts: 801
    edited November 2013


    (((((Jenn h.)))) So sorry that you are going what you are going through...

    · Share on FacebookShare on Twitter
  • jenn_h
    jenn_h Member Posts: 149
    edited November 2013


    well went to Pittsburgh today. I really like my doctor there! She is always very positive, always very informed about my case... I really wish I lived closer... Anyway, obviously xeloda is no longer doing the job so I will have to change meds and there are a cpl options but I will have to have a pet scan first to see if there's much internal involvement. Good news is going off xeloda hopefully will make my hand foot syndrome improve. I think the new medicine I will be going on is called avina or something similar... Will know more after a pet scan!!

    · Share on FacebookShare on Twitter
  • SpecialK
    SpecialK Member Posts: 16,486
    edited November 2013


    jenn - good to hear from you and glad that your doc in Pittsburgh makes you feel like she is on top of things and positive. Keep us posted on the PET!

    · Share on FacebookShare on Twitter
  • mamaoftwo
    mamaoftwo Member Posts: 267
    edited November 2013


    Hi All,


    I missed being part of this group, and thought I'd check the board to read up on how everyone is doing. I just had a friend diagnosed with DCIS considering a BMX and reconstruction, and brought back memories of having to go through that surgery and with no idea of what lies ahead. Jenn, hoping that the pet scan goes well for you and the new treatment works out.

    · Share on FacebookShare on Twitter
  • ruffy
    ruffy Member Posts: 141
    edited November 2013


    thinking of you Jenn. Hugs xo

    · Share on FacebookShare on Twitter
  • mamaoftwo
    mamaoftwo Member Posts: 267
    edited November 2013


    Jenn, hoping the best for you and that the pet scan goes well.

    · Share on FacebookShare on Twitter
  • SpecialK
    SpecialK Member Posts: 16,486
    edited November 2013


    Hi ruffy, crog, and mamaoftwo!

    · Share on FacebookShare on Twitter
  • crog234
    crog234 Member Posts: 801
    edited November 2013


    Hi SpecialK. Hope you are doing well. I am doing ok. I am going today to what I think will be my last PT session for learning to walk with my new leg... I am doing fairly well with it. Wow just realized that in less than a month it will have been 3 years since I started on this path.


    Wishing you and anyone else who happens upon this site a nice Thanksgiving....

    · Share on FacebookShare on Twitter
  • SpecialK
    SpecialK Member Posts: 16,486
    edited November 2013


    crog - I know what you mean about the passage of time since diagnosis! You have been through so much, I'm glad your PT has been good - do you feel it has been what you needed to manage your situation? I'm dealing with some skin cancer - the last one was removed this morning - my back is pretty carved up, but it's minor in the grand scheme of things.

    · Share on FacebookShare on Twitter
  • crog234
    crog234 Member Posts: 801
    edited November 2013


    SpecialK. I do feel that PT has helped me a lot. I am able to get up and move around so that is a good thing. You have probably mentioned this and I am just not remembering as my brain does not seem to work as well as it used to!!!! Is you skin cancer melanoma or basil cell or something else? My husband has had two bouts of basil cell cancer on his face. The last one was just this summer.

    · Share on FacebookShare on Twitter
  • SpecialK
    SpecialK Member Posts: 16,486
    edited November 2013


    crog - these are basal cells - I have a long (more than 20 basal cell skin cancers over 20+ years) history that pre-dates my BC issues, but have just had three treated on my back with a much more invasive method, and one of those was a recurrence, so they did the removal method with immediate pathology - I was there for six hours - longer for that than I was for BMX, lol! So right now, just having the last one yesterday, I have 3 lumpectomy scars on my back - so weird! When I had the recurrent one excised it was myself and a plethora of older gentlemen. All of theirs were on their face, ear or neck - they were probably wondering what my deal was because mine was not visible - probably thought I was there looking for a new man, lol!

    · Share on FacebookShare on Twitter
  • crog234
    crog234 Member Posts: 801
    edited November 2013


    SpecialK Well better basal cell than the other if you have to have it at all I guess.... One of my husbands was on the side of his nose and after they took it off he had a hole there till it filled in. The other one was on the side of his face. Just where you would go to look for a man!!! Ha ha ha. But I bet you had them all trying to guess why you were there... I have only heard of people with it on there face and neck. I assumed theirs was from to much sun over the years.. Who knows.. I now am dealing with osteoporosis from taking Arimidex for my very positive estrogen cancer.. I just had a work up with the Endo Doctor and all my tests came back normal. So I will be getting Prolia shots every six months to try to help with the bone loss.... It is a vicious circle...

    · Share on FacebookShare on Twitter
  • SpecialK
    SpecialK Member Posts: 16,486
    edited November 2013


    crog - I have done Prolia for a couple of years now. I had a total hyst/ooph nine years before BC, and developed osteopenia from that. I tried the oral meds - bisphosphonates that coat the bone. I had reflux surgery in '95 and couldn't tolerate the burning sensation those meds caused. Chemo and six months of Femara left me teetering on the brink of osteoporosis. I started Prolia, no SEs at all, and now have normal measurements at each point, just had a DEXA scan a couple of weeks ago - very happy! Prolia works differently than Actonel, Boniva and Reclast - it slows the normal aging bone removal mechanism (the reason osteoporosis is common among older people) while allowing the new bone forming mechanism to catch up and produce healthy bone.


    So far none of my skin cancer has been on my face - probably because I wear make-up and it has protected me. I am old enough to pre-date sunscreen and I grew up in Southern California, went to the beach - the sun is always out! I am a cautionary tale! My very first one was just under my right bottom cheek! The sun never was shining there, lol! Don't know why it appeared there, a mystery! The rest have been shins, forearm, back, shoulders - typical places.

    · Share on FacebookShare on Twitter
  • crog234
    crog234 Member Posts: 801
    edited November 2013


    SpecialK. Wow that is great on your bones. Hope it will work as well on me. 😊. There was another kind they mentioned, can't think of it right now, but you get that one by IV.. I liked the idea of the shot better. I have had enough with IVs..... I guess if that was the only way I could get it I would probably do the IV but definitely would proper not to.... I started arimedex August 2011. I had osteopenia last year and went to osteoporosis this year. Don't know why they didn't start this last year. Maybe because of everything else I was going through. Who knows. Can't go back only forward... Get my first Prolia shot this Thursday....


    I am old enough to predate sunscreen too... Ha ha ha. Well that kills the theory of sun causing that one at least... Ha ha ha

    · Share on FacebookShare on Twitter
  • SpecialK
    SpecialK Member Posts: 16,486
    edited November 2013


    crog - Reclast is probably the IV you were told about - it is a 15 minute infusion once a year, but that drug is a bisphosphonate, and there is a bit more fracture risk with that class of drugs. I hope the Prolia works for you - I am so impressed with the progress I made after only 4 injections. One of the things that has gone right for a change!!! Some docs won't treat osteopenia, they wait for an osteoporosis dx before treating, but my onc is pretty proactive, but I was pretty close to it anyway. He also does routine tumor markers and scans - so it comes down to style points with him!

    · Share on FacebookShare on Twitter
  • sewingnut
    sewingnut Member Posts: 1,129
    edited November 2013


    LOL, Special K trolling for guys at the surgeons office!!

    · Share on FacebookShare on Twitter
  • SpecialK
    SpecialK Member Posts: 16,486
    edited November 2013


    sewingnut - yeah, that's me! Lol!

    · Share on FacebookShare on Twitter
  • crog234
    crog234 Member Posts: 801
    edited November 2013


    SpecialK. I am glad it has worked for you and hope it does for me too... I should have been more proactive myself, I usually am, but with everything else that happened last year I guess I just had to many other things on my mind... Yes the name Reclast does sound familiar now that you mention it.. I know the Endo Doctor gives his ok to the Prolia...

    · Share on FacebookShare on Twitter
  • SpecialK
    SpecialK Member Posts: 16,486
    edited November 2013


    crog - you have been a little busy, so it is no wonder that it was on the back burner! I was lax myself - did not take Vit D and calcium as I should have, I was inconsistent after the hyst/ooph. You are supposed to supplement with both if you are on Prolia - so if you are not doing that yet you can start on that and feel proactive!

    · Share on FacebookShare on Twitter
  • crog234
    crog234 Member Posts: 801
    edited November 2013


    SpecialK. I am already doing the VitaminD and calcium. I have been on and off from calcium but have been taking it again for a little while. Vitamin D I have been taking for quite some time. Have a great day. My granddaughters and daughter are coming to visit today. That is always fun.....

    · Share on FacebookShare on Twitter
  • ruffy
    ruffy Member Posts: 141
    edited November 2013


    hi ya Special K, and the rest of us fab February girls!


    Glad everyone is doing ok and trudging along.


    I just got a new job and started back to work, it's great so far! Working at the local college :) refreshing after my last job at a surgeons office. Who fired me while I was recovering - (still makes me angry, even though I didn't want to go back there) but it's Way less stressful which is what I need. I've finally got somewhat of a grip with the whole early instant menopause thing. I do get very achy though and I guess I should be taking vitamins but I'm just so fed up with pills so I haven't been :( I've been taking my tamoxifen and a few others but the vitamins I just never want to take! Any ideas of a calcium that isn't a horse pill? And anything else I should be taking?


    They've decided to keep me on tamoxifen for a little while longer and then switch to an AI.


    Other than that, everything is good here.


    Thinking of you all and wishing everyone the best. Seems we all have our trials and tribulations along the way, but I know how tough, brave, and awesome we all are :)


    xoxo

    · Share on FacebookShare on Twitter
  • crog234
    crog234 Member Posts: 801
    edited November 2013


    ruffy. That's great about the new job. Something less stressful and you like it too..... The calcium pill I take is one of those horse pills that you speak of.... Ha ha ha. Don't know if they make anything smaller or not.. Yup my goal 3 years ago was to get off from the 1 pill that I was taking and look where I am now!!!! Have a good day!!!!

    · Share on FacebookShare on Twitter
  • ruffy
    ruffy Member Posts: 141
    edited November 2013


    thanks Crog, it's nice to be back in the work world! I know, what's with the horse pills??? A tough one to swallow for sure!


    Have fun with your girls! My moms in Florida escaping the cold. I miss her a ton!


    Have a great day!

    · Share on FacebookShare on Twitter
  • SpecialK
    SpecialK Member Posts: 16,486
    edited November 2013


    ruffy - I know there are some calcium gummies and chews - I have trouble with swallowing those large pills - a bit of dysphagia, so I always look for something I can chew instead. You need to come down to FL to visit your mom - and me! Here are links to the calcium:


    http://www.drugstore.com/products/prod.asp?pid=410604&catid=183252&aid=338666&aparam=47371260075id410604&device=c&network=g&matchtype=


    http://www.soap.com/p/viactiv-calcium-plus-vit-d-k-soft-chews-caramel-54203?site=CA&utm_source=Google&utm_medium=cpc_S&utm_term=JJ-285&utm_campaign=GoogleAW&CAWELAID=1323118947&utm_content=pla&adtype=pla&cagpspn=pla

    · Share on FacebookShare on Twitter
  • ruffy
    ruffy Member Posts: 141
    edited November 2013


    I wish Special K! That would be so cool! Thanks for the links, chewables just might work :) have a great day!

    · Share on FacebookShare on Twitter
  • crog234
    crog234 Member Posts: 801
    edited November 2013


    SpecialK I will be checking those links out too. Those horse pills are hard to get down.....

    · Share on FacebookShare on Twitter
  • pejkug3
    pejkug3 Member Posts: 902
    edited May 2014

    Good afternoon my former chemo-sisters.

    It is with a sad and dumbfounded heart that I let you ladies know that jenn_h is an angel.  She passed away yesterday after fighting this horrible disease like a champion.  She will forever hold a special place in my heart.  And her husband and young sons will miss her terribly.


    · Share on FacebookShare on Twitter
  • SpecialK
    SpecialK Member Posts: 16,486
    edited May 2014

    pejkug - oh no, that is so sad. Thank you for posting this even though it is not news any of us wanted to hear. The last time she posted I know she was looking for some direction, in Pittsburgh I believe.  I was just thinking of her after more recent bad news regarding a member of our Feb 2011 group - sadly, thefuzzylemon, has progressed and is struggling too.

    · Share on FacebookShare on Twitter
  • crog234
    crog234 Member Posts: 801
    edited May 2014

    such sad news...  Thanks for posting this Pejkug3...

    SpecialK how are you doing?  I heard through another board that Fuzzy was having problems.  I lost track of her.  She and I were friends on Facebook but somehow I lost her😒.  If you here any news on her could you let me know please.  You can PM me if you want.  Thanks

    · Share on FacebookShare on Twitter
  • SpecialK
    SpecialK Member Posts: 16,486
    edited May 2014

    crog - I actually got that news from lisagh, from this group - she is FB friends with fuzzy.  If you PM her she might be able to fill you in better.  All I know at the moment is that she had been hospitalized, and had progression.  There is a fundraiser for her to take a vacation with her daughters.  I had not been in touch and she stopped posting on BCO quite some time ago, I believe when her mother became quite ill.  Here is a link to another thread with some info:

    https://community.breastcancer.org/forum/67/topic/820945?page=1#post_4012988

    I just had a surgery last Fri. to remove my left side of recon - so right now I am flat there and have a drain.  I had a repair done in March that did not go well, attempted another repair last month so back to surgery, but did not heal, so this was what needed to happen.  In a few months I can try another expander and then exchange.  How are you doing and feeling?

    · Share on FacebookShare on Twitter

Categories