inflammatory breast cancer

joan_doyle
joan_doyle Member Posts: 29
edited March 2014 in Breast Cancer #1
Hi all My name is Joan from Dublin Ireland and have just found this site not too sure how to find my way around it yet - but will learn we don't have anything thing like this in ireland only organised meetings you have to travel to- hence the reason i am here I was diagnosed with the above a month ago and just 24th March 2010 had a port inserted and began Chemo A/C to start with and Then T/H Taxol and Herceptin I have the HER2 Gene and as far as i know it is positive have to re check with Doc interested to find anyone with similar to compare notes with the blood levels really dropped down on the 1st 10 day check any ideas how to keep them up? - I have done a lot of research on this type of BC and it is very aggressive and travels thro the body which my manage to go the the hip but have been lead to believe that they can turn off the HER2 gene we live in hope Thank for allowing me to use this site and wishing everyone with their own problems peace and strenght to carry on Cheers Joan

Comments

  • dyaneb123
    dyaneb123 Member Posts: 950
    #2
    Hi Joan
    So sorry for the
    Hi Joan
    So sorry for the reason, but I'm glad you found us. There are a lot of women on here with your type of cancer and I'm sure they will have lots of info to share with you about their experiences.You didn't say, but did you have to have surgery?
    Good luck
    Dee
  • heidijez
    heidijez Member Posts: 441
    #3
    I was diagnosed with
    I was diagnosed with inflammatory breast cancer in mid-December. Finished my sixth round of chemo last Thursday (taxotere and cytoxan). Have and appointment with oncologist tomorrow and with breast surgeon on Monday. Am told the next step is a mastectomy. Possible radiation and addition chemo to follow. Some questions regarding next steps due to the fact that I have moderately severe rheumatoid arthritis.

    This is a great place to get answers, I only wish I had found it in December instead of the end of March. However, I appreciate all the knowledge and experience the wonderful women on this site share!!
  • meena1
    meena1 Member Posts: 1,003
    #4
    heidijez said:

    I was diagnosed with
    I was diagnosed with inflammatory breast cancer in mid-December. Finished my sixth round of chemo last Thursday (taxotere and cytoxan). Have and appointment with oncologist tomorrow and with breast surgeon on Monday. Am told the next step is a mastectomy. Possible radiation and addition chemo to follow. Some questions regarding next steps due to the fact that I have moderately severe rheumatoid arthritis.

    This is a great place to get answers, I only wish I had found it in December instead of the end of March. However, I appreciate all the knowledge and experience the wonderful women on this site share!!

    I was diagnosed with
    I was diagnosed with Inflammatory breast cancer on July 7, 2008, almost 2 years ago. This cancer is very aggresssive and you must get prompt attention. I had 12 weeks of Taxol and Herceptin. I had a masectomy on November 11, 2008. I had 1 breast removed. I had very good results with the chemo. I also had 25 radiation treatment since it was in my lymph nodes. I also had a year of Herceptin treatment. By the time i was diagnosed, it had spread to my bones so i still go every 4 weeks for Zometa. I am doing well right now, my scans and blood tests have been coming back normal. YEAH!. I just want to let you know that there is hope. I did not have to have additional chemo, but I do know of someone who needed additional chemo after her masectomy. This is weird, but i was also diagnosed with severe arthritis like heidijez. I do not know if this is something from the cancer. I hope that all goes well for you, please keep a positive attitude. My oncologist was wonderful. If you need anything, please post here, or you can send me a private message. I hope you know how to do that. Please take care.
  • Rague
    Rague Member Posts: 3,653 Member
    #5
    IBC here too
    I was officially DX'd (mammogram, sonogram and biopsy done Aug 7) with IBC last Aug 8th. Had lots appts (surgeon first who would not think of surgery until after chemo) and tests. Aug 25th had port put in and started A/C the next day. 2 weeks after last A/C had mod. rad. mastectomy. 3 weeks later started 12 weekly Taxol. A week after Taxol, started 25 rads - got burned BAD at the end but it's finally close to being healed. I'm HER2 neg. so didn't need Herceptin but am on Femara for at least a year and probably 5.

    I got a lot of shrinkage of "it" with the A/C so that surgeon was 'happy' when he did surgery.

    You said your blood levels dropped - which ones and are you on Neulasta?

    HEY - we are strong and we can do whatever is needed! God Bless!

    Susan
  • Rague
    Rague Member Posts: 3,653 Member
    #6
    meena1 said:

    I was diagnosed with
    I was diagnosed with Inflammatory breast cancer on July 7, 2008, almost 2 years ago. This cancer is very aggresssive and you must get prompt attention. I had 12 weeks of Taxol and Herceptin. I had a masectomy on November 11, 2008. I had 1 breast removed. I had very good results with the chemo. I also had 25 radiation treatment since it was in my lymph nodes. I also had a year of Herceptin treatment. By the time i was diagnosed, it had spread to my bones so i still go every 4 weeks for Zometa. I am doing well right now, my scans and blood tests have been coming back normal. YEAH!. I just want to let you know that there is hope. I did not have to have additional chemo, but I do know of someone who needed additional chemo after her masectomy. This is weird, but i was also diagnosed with severe arthritis like heidijez. I do not know if this is something from the cancer. I hope that all goes well for you, please keep a positive attitude. My oncologist was wonderful. If you need anything, please post here, or you can send me a private message. I hope you know how to do that. Please take care.

    Arthritis
    I've known for years that I had arthritis in my back, basically between my shoulders. It's never bothered me but showed up on X rays. A couple of weeks ago (while my rad burns were at their worst) started getting pain in the area but the burn pain was worse so really didn't think too much about it. Yesterday, I saw my PA and she's pretty sure it's the arthritis that's causing it but ordered another bone scan 'just to be safe'. So we'll see.
  • Ritzy
    Ritzy Member Posts: 4,381 Member
    #7
    dyaneb123 said:

    Hi Joan
    So sorry for the
    Hi Joan
    So sorry for the reason, but I'm glad you found us. There are a lot of women on here with your type of cancer and I'm sure they will have lots of info to share with you about their experiences.You didn't say, but did you have to have surgery?
    Good luck
    Dee

    Hi Joan and welcome, though
    Hi Joan and welcome, though sorry for the reason you are here. Just want to wish you good luck with your treatment.

    Sue :)
  • Lynda53
    Lynda53 Member Posts: 210
    #8
    Rague said:

    IBC here too
    I was officially DX'd (mammogram, sonogram and biopsy done Aug 7) with IBC last Aug 8th. Had lots appts (surgeon first who would not think of surgery until after chemo) and tests. Aug 25th had port put in and started A/C the next day. 2 weeks after last A/C had mod. rad. mastectomy. 3 weeks later started 12 weekly Taxol. A week after Taxol, started 25 rads - got burned BAD at the end but it's finally close to being healed. I'm HER2 neg. so didn't need Herceptin but am on Femara for at least a year and probably 5.

    I got a lot of shrinkage of "it" with the A/C so that surgeon was 'happy' when he did surgery.

    You said your blood levels dropped - which ones and are you on Neulasta?

    HEY - we are strong and we can do whatever is needed! God Bless!

    Susan

    i Joan, IBC here also
    I found it in ZAugust, turned huge red and hot & hard in less tna 8 hrs. Checmo fo 6 infusions, troubles there as ZI havea heat pobrlem as well as I wss allergic to taxol/taxotere/ I was desesitized at an allergy clininc and had the remaining treaments, Went fro 5 cm to less than 1cm, stillhad cancer in the breast skin, Mastectomoy last Friday, all seems okay.Then I will have radiation.
    'Duruing chemo,m take al recautuinary mes, anti diarrheam stoll sofener, and rink liquids. Hdate hydtare, hekps w.chemo and hard meds. Shaving your hair is up to you, I did not, no regrets, but I did cut it shorter.
    Same after mastectomoy, stoll softener too help the oxycodone and hydrate to get the everything out of me, Ports are annoying but not impossible.
    I worked until the day before surgery, personal choice and ability. I plsn to return to work and wrk thru the rads as wll, if I am able.
    Great advice,opinions, thoughts and personal ventures here to give you ideas to think or ask about
    Good luck and peace
  • DianeBC
    DianeBC Member Posts: 3,881 Member
    #9
    heidijez said:

    I was diagnosed with
    I was diagnosed with inflammatory breast cancer in mid-December. Finished my sixth round of chemo last Thursday (taxotere and cytoxan). Have and appointment with oncologist tomorrow and with breast surgeon on Monday. Am told the next step is a mastectomy. Possible radiation and addition chemo to follow. Some questions regarding next steps due to the fact that I have moderately severe rheumatoid arthritis.

    This is a great place to get answers, I only wish I had found it in December instead of the end of March. However, I appreciate all the knowledge and experience the wonderful women on this site share!!

    Welcome
    This is the best place for support and encouragement! I don't know what I would have done without it. I think our bc sisters know more than the doctors at times. Wishing you good luck!
  • joan_doyle
    joan_doyle Member Posts: 29
    #10
    dyaneb123 said:

    Hi Joan
    So sorry for the
    Hi Joan
    So sorry for the reason, but I'm glad you found us. There are a lot of women on here with your type of cancer and I'm sure they will have lots of info to share with you about their experiences.You didn't say, but did you have to have surgery?
    Good luck
    Dee

    just to say thanks for reply
    Just to thank you for your response very kind of you I expected when finished treatment then surgery so i'm told now by surgeon my onc is much nicer man down to earth and his attitude is 'it will be a long time before he gets his hands on you;?? love the photo you look great hope I responding correctly how are you ? cheers Joan
  • joan_doyle
    joan_doyle Member Posts: 29
    #11
    to everyone
    Thank you for your lovely thoughts and information I am not sure how to respond but I will get use to it- its just to say a Big thank you for now peace and strenght Cheers Joan
  • MAJW
    MAJW Member Posts: 2,510 Member
    #12
    Neulasta injection...
    Joan,

    I wish you well as you undergo your treatment. You mentioned low blood levels.....are you talking about your white cell count? If so, ask about Nuelasta......Myself and most of the women having chemo are administered this injection 24 hours after EACH chemo infusion....It forces your body to produce white blood cells to try and prevent possible infections during your treatments.....I had it after each chemo.....my blood count stayed perfect although the Nuelasta does have some uncomfortable side effects.....sort of feels like you have the flu....
    But it is quite manageable....

    On a side note.......I love IRELAND! Have visited there and have friends in Killarney.......loved Dublin!

    I wish you the best.....
    Peace be with you
    Nancy
  • joan_doyle
    joan_doyle Member Posts: 29
    #13
    MAJW said:

    Neulasta injection...
    Joan,

    I wish you well as you undergo your treatment. You mentioned low blood levels.....are you talking about your white cell count? If so, ask about Nuelasta......Myself and most of the women having chemo are administered this injection 24 hours after EACH chemo infusion....It forces your body to produce white blood cells to try and prevent possible infections during your treatments.....I had it after each chemo.....my blood count stayed perfect although the Nuelasta does have some uncomfortable side effects.....sort of feels like you have the flu....
    But it is quite manageable....

    On a side note.......I love IRELAND! Have visited there and have friends in Killarney.......loved Dublin!

    I wish you the best.....
    Peace be with you
    Nancy

    Neulasta injection
    I never heard of this must enquire - the blood count was down - what they do here and maybe everywhere they give the chemo (A/C) wait ten days and do a blood count and then do another just before the next chemo is given - so in the mean time trying hard with foods etc (not with guiness)to build back up before they give the next shots the A/C is A = A doxorubicin and C = Cyclophosphamide. Killarney is really a beautiful place the scenery the food and the drink of course the pubs - Dublin is good but when you live here as the saying goes the grass is always greener on the other side! thanks for the information will cheers where are you from ? Joan

Discussion Boards