Starting chemo January 2009?

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  • ktym
    ktym Member Posts: 2,637
    edited July 2012

    Not too good right now Jess.  I don't know if you guys remember but I ended up in renal failure from the taxotere.  It improved but never went back to normal.  They warned me the renal issues would wax and wane but only time would tell how well I would do.  Well, it is waxing right now and I'm pretty miserable.  I hate that f------ taxotere with all of my soul. I have not had a single day without pain since I took it.  I've ended up changing my career, giving up many of the activities I used to love to do, and now I'm facing this crap.

  • jrgolomb
    jrgolomb Member Posts: 1,236
    edited August 2012

    I am so sorry it's not going well, KmMD.  I am thinking of you.  I want you to know I have a few students working on the song and youtube idea we started last spring.  We will start the final stage, hopefully during the beginning of school.

  • ktym
    ktym Member Posts: 2,637
    edited August 2012

    Keep me updated Jess, that is great

  • BerkeleyKim
    BerkeleyKim Member Posts: 390
    edited August 2012

    Kate--so sorry to  hear about the kidneys. I hope it's not permanent and that you have improvement really soon. BC has really taken so much from so many of us.

    Jess--Keep us posted on the YouTube!

    I met with my onc after my bone scan (scary that I got a call almost 2 weeks after the scan from scheduling saying they wanted me to get a tumor marker test and diagnostic xrays but not why--all before i even heard the results). Anyhow, they think the rib hotspot (apart from the spine and knee hotspots they think are probable arthritis) is a healing fracture. But they will scan in a few more months to check. Bleech. The onc said she's really not worried so that relieved some stress.

    School starts Monday! Hey Jewels--we're coming up on 4 years!!!

  • jrgolomb
    jrgolomb Member Posts: 1,236
    edited August 2012

    Wow Kim- that has got to be stressful.

    yes, I am working on the you tube song- we had a bit of a delay with the buildings shutting down, but I hope to be able to post it here at some time......If not, I will send out the you tube address....

     Has anyone heard from Phyllis??? Maybe I need to dig backwards again.... I hope she is okay.

    Hugs and kisses to all.  

  • PLUTZ
    PLUTZ Member Posts: 133
    edited August 2012

    Hi Jewels! I'm so sorry i haven't been in touch. it has been a very busy spring and summer. We moved into our new home in April and a day later I was in the hospital. It has been a rough ride. I had really bad side effects from the chemo so I was taken off of them in May. I was in the hospital twice in 3 wks for my heart rate, pulse rate  and I can't remember what else. I was also dehydrated. i was in the hosp. for 3 days the first time and 2 the second time. After the second time, i could barely walk. Was told it was side effects from the chemo.I had a physical therapist come to my home, i had a walker and a transport to get around. I still use the transport if I have to do a lot of walking. My left leg still has not healed. in May when i was starting back up on the chemo, my blood count was off so my Dr. took me off everything and told me to go home and heal for a few weeks.  i was not feeling well the first few weeks, but I started gaining strength and began to walk better and was able to drive. Then came news last week that i did not want to hear. i had a petscan and they found fluid in my lung once again which means either the cancer didn't clear up from the chemo or it came back and they also found a spot on my liver. So I see the dr. next week and I'm only going on the xeloda for the time being and hope it works. I'm starting to  cough and run out of energy again. But i have had good things happen this summer. My baby graduated from high school. We gave her a graduation party. Last Thurs. she left for Kent State. She is studying child psychology. I'm so proud of her. What a zoo moving her in. She had a fun filled weekend with lots of activities and she likes her roommate. Thats a good thing. She'll be coming home this weekend. My older daughter is doing well. She's working 2 jobs but she likes both of them. Well i will stay in touch. I didn't get a chance to read whats going on, but hope all of you are doing well. God Bless.

  • ktym
    ktym Member Posts: 2,637
    edited August 2012

    Thanks for checking in Plutz. You should be proud of those two wonderful daughters of yours. How wonderful.  I'm sorry you've been feeling so poorly.  Think of you often, if thoughts could do it I would be sending some energy your way

  • jrgolomb
    jrgolomb Member Posts: 1,236
    edited September 2012

    Thank you Phyllis for checking in.  I hope you feel better soon.  I think of you often. 

  • PLUTZ
    PLUTZ Member Posts: 133
    edited September 2012

    Hi Ladies, Well, I start the xeloda pills tomorrow. Have an appt. in 3 wks. hopefully they'll start working.

  • ktym
    ktym Member Posts: 2,637
    edited September 2012

    Keeping my fingers crossed for you Phyllis

  • BerkeleyKim
    BerkeleyKim Member Posts: 390
    edited September 2012

    Phyllis--Hoping the xeloda works, with few side effects, and you get good news soon. Congratulations to your daughter!

    My youngest just graduated in June. Moving her in on Thurs to dorms at UC Santa Cruz. 3 girls in a double room.

     Hugs to all jewels. My 4 year "anniversary" of diagnosis is next week.

  • jrgolomb
    jrgolomb Member Posts: 1,236
    edited September 2012

    Phyllis-- Ditto BK and the xeloda.

    BK- yay!  the baby is out to college!!  How is the empty nest now???

    Just had another black belt test and two of my students passed with flying colors.  We had a nice day.  

    Dealing with horrible joint pain with the femara- plus more weight gain!  :(  Next up:  the digital mammogram and blood tests  next month.  

    October marks 4 years since --well you all know!  

    Hugs!

  • jillyG
    jillyG Member Posts: 401
    edited October 2012

    Hello Jewels!!!!!!  Haven't been on here forever but just spent an hour reading posts.  All is well up here in Alberta Canada.  I can't believe it's been 4 years since we all started on this rotten journey.  Haven't had too many scares, just some complex cysts that I follow up on every 6 months, probably from the Tamoxifen.  My babies are 7 and 9 (they were 3 and 5 when I was diagnosed!).  We are headed to Disneyland next Friday for 10 days, can't wait to feel the sunshine....considering we got a big pile of snow today, not usual for October, but you never know I guess.  I was scrambling to find gloves and winter boots for the kids this morning.

    Phyllis, congrats to your daughter on graduating and heading to Kent State, woderful news.  I hope the Xeloda works for you :)

    Kim, happy cancerversary!  I always think of all you ladies and what a wonderful support system you all provided.  The Jewels were a great team!  You ladies kept me sane in insane times. 

    Jill

  • jrgolomb
    jrgolomb Member Posts: 1,236
    edited October 2012

    Hi Jilly!

    I am so glad you posted.  I was wondering how all was going for you.  I hope you have great fun in Disneyland. 

    Latest Mamo came back clear.  This year, I burst into tears when I got the results.  I felt so relieved. 

    Blood tests next week and a conversation about scans. 

    My daughter  is still in the thick her studies at  U of M and has been asked to apply for a project run in Washington DC....this is after she completes several weeks in Morocco.  A bit worried about a young American in Morocco.  I have been there, but gosh, that is many years ago.......Foot in Mouth  Things have certainly changed since then.....(I was there during the 80s)

  • jrgolomb
    jrgolomb Member Posts: 1,236
    edited November 2012

    Off to finally have a "nipple" on my foob. I suppose I could call it fipple.  anyway, the radiation made everything so tight, I have to pad my bra and the surgeon said he could build my breast up a bit so it will be more even and will fit.  I hope it works!

  • BerkeleyKim
    BerkeleyKim Member Posts: 390
    edited November 2012

    Hope everyone had a great Thanksgiving. I'm forever Thankful for the support of everyone here!

    Jilly--good to hear from you, and you put it well about the group keeping us sane in insane times.

    Jess-how exciting for your daughter. I may have had similar Morocco travel experiences as you. I was there in 78. Ha--wouldn't want my daughters doing the same route. Let us know about the scan conversation. I'm supposed to have a repeat bone scan now but didn't want to worry over thanksgiving. How crazy is that. Now I'm thinking maybe I'll wait til after winter break.

    How's everyone else? 

  • jrgolomb
    jrgolomb Member Posts: 1,236
    edited December 2012

    Hi everyone.  I hope the holidays are faring well.  I'd love to hear from you all...if it was just to check in once a month and let us know what is up!

    Happy Holidays, anyway!

  • ladyjane54
    ladyjane54 Member Posts: 192
    edited January 2013

    Just wanted to stop by and say Happy New Year to my favorite Jewels!  Another cancer free year under our belts!  Looking forward to getting off Tamoxifen.  Side effects are not horrible but still don't feel healthy most of the time.  Hoping it is "side effects" and not just old age lol.  Won't I be disappointed if I get off and still have all the aches and pains.  Heard a report that they are now recommending 10 years of tamoxifen??? Gonna discuss with Onco dr. at next visit.  Anyone else discussed this with their doctors yet?

    Well sure glad I survived cancer as I had one newly born granddaughter when I started this journey (who is now 3) and by the  end of February I'll have 6!!  That's right 6! Both my daughter and my son's wife have been very busy.  I now have two granddaughters and two grandsons and both are due with girls in February.

    My husband and I have been doing some travelling this past year.  Went to Ireland for the Navy game and just spent the week after Christmas in Cancun. Have returned to teaching fulltime and life is good.

    May you all have a happy and healthy 2013!  I think of you all often.  Thanks for the support when it was needed most.

    Patti

  • jrgolomb
    jrgolomb Member Posts: 1,236
    edited January 2013

    Hi LJ!  Long time no see!  I just had the 10 year conversation with the onc in December.  Ugh!  I was thinking I was all good in a year or two!  Of course I have been on tamoxifen for two and a half and now on the femara for about a half a year and then I've been told I have to take the pill for at least four more years.  I have to say, the tamoxifen was worse for me.  Now, I have aches and pains which I have sort of gotten used to. 

  • momand2kids
    momand2kids Member Posts: 1,508
    edited January 2013

    Dear all

    just back from my 6 month visit with onc and mammogram--all clear.... I am always surprised at how relieved I am when I ususally think I am not worried.  We talked about an MRI in the fall and 2 more visits and getting off femara!!!!! Hard to believe--I started active treatment 4 years ago this month-and boy, was I terrified.

    There are no guarantees as we all know, but I do so love it when she calls me "very low risk".... makes my day.  My only big problems are the vaginal dryness and episodic hip pain, which does seem to be directly related to exercise... but, because she is so great, she said I could have a pet scan if I wanted to... I am thinking about it.

    But, for now, all clear.... so I had 2 slices of pizza to celebrate!!!

    best

  • ktym
    ktym Member Posts: 2,637
    edited January 2013

    Just checking in to say hi,  nice to hear from so many

  • jrgolomb
    jrgolomb Member Posts: 1,236
    edited January 2013

    KMMD-- so glad to see you post.  I am heading down your way very soon.  I would love to meet with you, if you get a chance. 

    Hugs and kisses to all.

    I am having fibroid issues , and so am waiting to hear if I should have the works taken out.  The fear never really leaves, but am plugging along.  I still don't quite forget the other shoe could drop and so i am enjoying life as much as I can.  I am certainly more feeble than ever before and I hate wobbling as the femara and some neuropathy issues have slowed me down. Nonetheless, I plan on a trip overseas this summer and am busy visiting our state capitol and ranting a bit, when they'll listen. 

    Jess

  • ktym
    ktym Member Posts: 2,637
    edited January 2013

    Jess, love the thought of the ranting and living large.  That is awesome.  Would love to see you when you come through this way

  • jrgolomb
    jrgolomb Member Posts: 1,236
    edited January 2013

    Kmmd- I think I will be your way  for a  girl day's out trip with my students in late March , early April.  We will probably watch some of the performances and I have just begun working on a writing project for my students and the high school and a coed "frat" group in U of M.  It will be interesting to see how this all plays out. 

    I am trying to figure out how to pay for gas- Snyder's cuts and our admin's decision to charge the teachers 1.75 per mile for field trips  has created complications. 

  • BerkeleyKim
    BerkeleyKim Member Posts: 390
    edited February 2013

    Good to see Jewels checking in!

    I'd been waiting for my follow-up bone scan (done 12-31) to the one I had this summer which was needed for the end of the bisphosphonates trial and showed arthritis and a spot on rib...FINALLY got results last week (after calling several times--onc said she would call with results but the only response in early Jan was..."we need to move your  april appt up to now" (but onc was on vacation so I didn't see her til last week!) So anxiety to the max...but the spot on rib hasn't changed (but hasn't gone away either) and no new ones.

    Momand2 kids this reminds me of what your onc said...mine then asks if I want a CT scan. Do I want one??? What do I know? So we set one up for June but I think I'll call tomorrow and move it up to get it over with before summer vacation.

    I'm feeling fine (tired..but what Kinder teacher isn't) and sometimes achy but walking and trying to swim now that "spring" hits the Bay Area. When I got weighed last week nurse told me I lost 8 lbs since May! I've been trying to cut down on bread, my comfort food and it's so hard. But BP was sky high (of course thinking the worse while waiting weeks for an answer).

    Well, Jewels...my 4.5 year mark is coming up next month!

    p.s. Jess--can't believe they charge YOU to go on field trips. I love them but they should pay me double time for herding Ks around.

  • jrgolomb
    jrgolomb Member Posts: 1,236
    edited February 2013

    Kim-- I know, isn't it disgusting?  Let's just say the austerity measures put down by our legislature is maddening. 

  • jrgolomb
    jrgolomb Member Posts: 1,236
    edited April 2013

    Hi everyone.  Well, I am finally going to get the chronic hoarseness checked out.  I am worried.  I don't know that the worry really every goes away. 

    How the heck is everyone??  Busy with life??  That's good.

    I hope to hear from you soon.

  • brendafromflorida
    brendafromflorida Member Posts: 90
    edited May 2013

    Hi everyone.  Haven't been here or posted for quite a while now.  I am well except for the effects of the arimidex.  Coming up on my 4.5 yr date also.  Just saw onc today and he switched me over to femara hoping it helps.  Just wondering if any of you have any experience with genetic counseling.  Unfortunately, my only sibling, (brother) was diagnosed with inoperable, metastatic pancreatic cancer in January.  He is at home under hospice care and holding his own but it has been a roller coaster.  My onc is recommending genetic testing because on one side of my family in 2 generations we have 2 stomach, one colon, one breast,one cervical, one prostate and now pancreatic.  Not a very good history.  I am freaking out.  I am worried for my sons and my brothers children.  Does it ever stop?  I was beginning to relax knowing my 5 year mark is approaching.  UGH!!!Frown

  • ktym
    ktym Member Posts: 2,637
    edited May 2013

    Jess, keep us updated.

    brendafromflorida--good to hear from you.  I'm so sorry about your brother.  No, I don't think it stops.  Just is this roar I ignore whenever possible and I stop and realize what I've gotten used to and am amazed.  The genetic thing scares me too, I'm not happy about my results and subsequent surgery and telling relatives especially younger ones making decisions about ovaries etc is hard.  Hugs and I'm hoping things come back negative on the testing.

  • jrgolomb
    jrgolomb Member Posts: 1,236
    edited May 2013

    Tomorrow is the day I go to a new doctor to see the cause of my hoarseness.  I will fill you in.

    Hugs, all

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