Hi everyone!

debrajo
debrajo Member Posts: 1,095 Member
in Uterine/Endometrial Cancer #1

First let me thank all of you for the kind words and for checking up on me!  I appreciate it all so much!  The heart surgery recovery is taking much longer than the other two times, but I am beginning to come back some.  CA 125 was at 30, but no one seems to be to concerned, so I request another test in June or August.  We'll see.  I also wanted to ask some questions here in the hopes that some of you might know instead of being a downer over on the breast cancer board(Doubble Whammy?}  My daughter-in-law is a six year surviver of stage 2, grade c breast cancer.  She has lost 25 pounds and is white as a sheet.  She went in two days ago for PET scan.  Long story short, the cancer is back in her liver and spots on her bones.  She has a liver biospy this Tuesday.  The first time(at 34 years old...no BRACA}she had a mastactomy and Doxil/Crispaten.  Question:  Is Doxil called The Red Devil?  Can she have the same chemo or has cancer found a way around these drugs?  She took Tamoxifen for five and a half years.  No one ever mentioned a hysterrectomy(hormone sensitive) to her.  Is that something she can do?  Just looking for some possible answers.  The only experence I've has with breast cancer is my mother.  She had stage 2, grade c just like my daughter-in-law, but she only had the mastomecty and the Tamoxifen and she was 61 at diagnoses, not 34.  Any comments, ssuggestions, ect.?  Thank you all in advance!  Debra-Never-A-Dull-Moment-Here-Jo!

Comments

  • Kathy G.
    Kathy G. Member Posts: 245 Member
    #2
    Hi Debrajo!
    So good to hear

    Hi Debrajo!

    So good to hear from you...sorry the heart recovery is taking longer than expected...or wanted. I never realized until I got my heart issues how widely our hearts affect our bodies. My level of fatigue going thru different meds was overhwhelming. Plus, we are not getting any younger! I am sure that plays a factor, too!

    I am also sorry to hear about your daughter-in-law's breast cancer. Geeez! I have no knowlege to offer you as requested, but as you know one of the other ladies will no doubt be on to help you.

    My prayers for you, your daughter-in-law and family. You really do have your hands full!

    Kathy

  • DebiR
    DebiR Member Posts: 38 Member
    #3

    Adriamycin is what is known as the "Red Devil" in chemo drugs.  When I was diagnosed with a sensitivity to Taxol my doctor talked about this being the drug they would use in it's place.  I ended up finding out about a desensitization protocol for Taxol that my doctor agreed to try and worked so I was able to continue with the original Carbo/Taxol combination that was planned.  

    You can read more about it here:

    https://www.caring.com/questions/red-devil-chemo

    One of the major issues is it's effect on the heart which is why I was trying to avoid it if possible due to a family history of heart problems. They do monitor your heart very closely if you have this chemo and I think it is still commonly used for breast cancer.

    HTH!

    Debi

    UPSC 3A

     

     

     

  • AWK
    AWK Member Posts: 364 Member
    #4
    Hi! I had three treatments of Doxil

    My UPSC had progressed through frontline so the second line was Doxil.  In order to get cleared for it I had a heart scan (which was in 3D, so cool).  The side effects were the blistering of the feet, pretty much where anything rubbed them.  I put moleskin on those spots and slathered my feet in udderly smooth creme at night.  I had cold sores in my mouth and got a prescriptive mouthwash for that which took care of things.  That was pretty much the worst of it.  I worked while undergoing those treatments.  We ended up stopping because I continued to progress and switched to Avastin which we just stopped due to more progression.  Both the Doxil and Avastin were much easier than frontline.  Now we are searching for clinical trials for me, the back up plan is Permatrexed if nothing pans out.  Hang tough.  Wishing her well!  Anne.  

  • debrajo
    debrajo Member Posts: 1,095 Member
    #5
    Thanks Ladies!

    Thanks again AWK, Kathy G. and debi.  I checked out the web link you sent Debi znd it explained so much!  I will send her the information as soon as she's calmed down a bit from throughing a Texas size Hissy Fit!  She is some kind of mad...cancer shouldn't hapen to a person once much less twice.  I will keep you all informed and will have other questions.  The people on these board are more intellegent and imformative that a whole passel of doctors!  Thanks again for the link Debi!

     

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #6
    debrajo said:

    Thanks Ladies!

    Thanks again AWK, Kathy G. and debi.  I checked out the web link you sent Debi znd it explained so much!  I will send her the information as soon as she's calmed down a bit from throughing a Texas size Hissy Fit!  She is some kind of mad...cancer shouldn't hapen to a person once much less twice.  I will keep you all informed and will have other questions.  The people on these board are more intellegent and imformative that a whole passel of doctors!  Thanks again for the link Debi!

     

    Adriamyacin is Red Devil

    Hi Debrajo-  I guess you got your answer about the Red Devil.  There are some excellent online brochures for breast cancer patients via the NCCN site.  http://www.nccn.org/patients/guidelines/stage_iv_breast/index.html is the one for Stage IV Breast cancer, which as you know, is now your DIL's stage.  You may be able to get some answers there.  Breast cancer is really sneaky.  Just when you think you're safe and have done everything right . . . . A very good friend of mine has developed mets to the bone and lung TEN years after her diagnosis!   I'm absolutely sick about it.  In addition to ER+, she's also HER-2 positive, but back in the day, Herceptin was not used as first line treatment.  And I really believed she showed them.  Not.  She was also early stage, and I think she might have even been Stage 1!  But HER-2+.  As you said, no one should have to go through this twice and all the pink ribbons don't prevent a doggone thing!  For many women, Stage IV breast cancer can be managed for many, many years.  I hope this is the case for your DIL. 

    Good to hear from you again.  I hope you recover from that doggone surgery and find yourself in good health soon.

    Suzanne

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #7
    I just wanted to tell you

    I just wanted to tell you that I was told by Jazzy1(Jan) that she was taking Doxil and that they called it The Red Devil.   Truthfully, they probably all can be called that!

     

    So happy to hear you are coming back from Heart Surgery.   

     

    Just wanted to wish you well and say hello

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
    #8
    Doxil

    I believe that Adriamycin is a brand name for Doxorubicin(Doxil  It was called the red devil for its red color and problably rather terrible side effects.  There is a newer version being used now alaso called Doxil, but is doxorubicin(liposome)  It is encapsolated in a closed lipid sphere.  refered to as a stealth  it can travel to the cancer cells and not bother as much of our bodies.  It does not bother the heart as much as the old stuff and side effects are supposed to be less.

    I have had 4 Doxil after i use up my time with Taxol/ Carbo.  1ast time side effects were very minimal. 2nd time I felt worse than I ever had.  3 and 4 have been minimal side effects but the hand and foot thing is starting to bother me.  I still have neurapathy from the Taxol so it is hard to tell.  Sone i will have another Ct-scan and will find out if it is working.

    If they can encapsolate this why can't they do that with the other types of chemo.  Just thinking.  Hugs and prayers to all.  Lou Ann

  • debrajo
    debrajo Member Posts: 1,095 Member
    #9
    Double Whammy said:

    Adriamyacin is Red Devil

    Hi Debrajo-  I guess you got your answer about the Red Devil.  There are some excellent online brochures for breast cancer patients via the NCCN site.  http://www.nccn.org/patients/guidelines/stage_iv_breast/index.html is the one for Stage IV Breast cancer, which as you know, is now your DIL's stage.  You may be able to get some answers there.  Breast cancer is really sneaky.  Just when you think you're safe and have done everything right . . . . A very good friend of mine has developed mets to the bone and lung TEN years after her diagnosis!   I'm absolutely sick about it.  In addition to ER+, she's also HER-2 positive, but back in the day, Herceptin was not used as first line treatment.  And I really believed she showed them.  Not.  She was also early stage, and I think she might have even been Stage 1!  But HER-2+.  As you said, no one should have to go through this twice and all the pink ribbons don't prevent a doggone thing!  For many women, Stage IV breast cancer can be managed for many, many years.  I hope this is the case for your DIL. 

    Good to hear from you again.  I hope you recover from that doggone surgery and find yourself in good health soon.

    Suzanne

    Thank you Suzanne, Keleena, and Lou Ann!  I am learning a lot, Darn It!  My DIL had a needle biospy on her liver today...don't know what they think about the spots on her bones.  She's so mad she has decided to go on a cruse she and my son had planed for a while before all this!  She is also planning to get a tattoo and dye her hair before it all falls out!?  I'm staying out of her path til the biospy comes back!

     

    I guess I did not know she was stage IV now, but it stands to reason since I'm 99% sure it is mets and not a new primary.  The Dr.s have already started making "predictions" as to her survival time(3-10 years) which I personally think is BS and sooo wrong!She was at M.D. Anderson then moved to Louisiana and is at Alexandria.  I'm trying to get her to come back to Houston.

     

    Thank you all again for the info and the welcome bacK.  I check in almost every day, but don't post too much.  Some of the newbies coming on board stories just break my heart!  And lossing some of our family is even worse!  Trying to stay positive and to keep breathing...deep! LOL!  Best, Debra

  • HellieC
    HellieC Member Posts: 524 Member
    #10
    So sorry to read this, Debrajo

    So sorry to read about your DIL Debrajo.  But I think being mad is good at this stage - it will mean she is up for the fight and all guns blazing to knock this beast down again. In the meantime, a cruise sounds good!  It is possible they will give her the same chemo combo she had first time around, as there has been such a long break between original treatment and recurrence.  I seem to remember that my oncologist said that if there was at least 6 months between then they could start with the same combo.  There are various versions of the Red Devil.  The drug is called doxorubicin (it's an anthracycline).  It's original trade name was Adriamycin, I think, but there have since been two liposomal versions (drug encapsulated in a lipid) - Doxil and Myocet - both of which are easier on the heart.  I understand that Myocet may also be easier on the hand and foot syndrome, but don't quote me on that! It is red and I think it comes in a black bag (a lot of chemo drugs are light sensisitve), which makes it look even more sinister!  Always good to frighten us chemo patients as much as possible, don't ya think - not!  :-(

    Thinking of you and your DIL - cancer is such a sneaky beast - just when we think we've beaten it, it raises it's head again.  No one should have to go through this twice.  It makes me so angry.

    Helen xx

     

     

  • debrajo
    debrajo Member Posts: 1,095 Member
    #11
    HellieC said:

    So sorry to read this, Debrajo

    So sorry to read about your DIL Debrajo.  But I think being mad is good at this stage - it will mean she is up for the fight and all guns blazing to knock this beast down again. In the meantime, a cruise sounds good!  It is possible they will give her the same chemo combo she had first time around, as there has been such a long break between original treatment and recurrence.  I seem to remember that my oncologist said that if there was at least 6 months between then they could start with the same combo.  There are various versions of the Red Devil.  The drug is called doxorubicin (it's an anthracycline).  It's original trade name was Adriamycin, I think, but there have since been two liposomal versions (drug encapsulated in a lipid) - Doxil and Myocet - both of which are easier on the heart.  I understand that Myocet may also be easier on the hand and foot syndrome, but don't quote me on that! It is red and I think it comes in a black bag (a lot of chemo drugs are light sensisitve), which makes it look even more sinister!  Always good to frighten us chemo patients as much as possible, don't ya think - not!  :-(

    Thinking of you and your DIL - cancer is such a sneaky beast - just when we think we've beaten it, it raises it's head again.  No one should have to go through this twice.  It makes me so angry.

    Helen xx

     

     

    Hi!

    Hi Helen and thanks for the info...I am getting another education for sure.  Knew this was rough, but didn't know there were differen' "levels

    ' of intensity!  I believe you re so right...anger cn be  very good thing!  I remember, back in the day, ALWAYS being mad.  I don't know how my son is doing in all this.  If he is like the rest of the men in this family he is ready to run for the woods!  
    They do not deal well with anything unpleasent!  He is scheduled to go back to  Saudia Arabia June 17 th.  Think he wants to escape her rath!LOL!  Thank you for chimming in and I wanted to say how fabulos you look!  Quite beautiful really!  Best, Debra

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #12
    debrajo said:

    Hi!

    Hi Helen and thanks for the info...I am getting another education for sure.  Knew this was rough, but didn't know there were differen' "levels

    ' of intensity!  I believe you re so right...anger cn be  very good thing!  I remember, back in the day, ALWAYS being mad.  I don't know how my son is doing in all this.  If he is like the rest of the men in this family he is ready to run for the woods!  
    They do not deal well with anything unpleasent!  He is scheduled to go back to  Saudia Arabia June 17 th.  Think he wants to escape her rath!LOL!  Thank you for chimming in and I wanted to say how fabulos you look!  Quite beautiful really!  Best, Debra

    Different types of Breast Cancer

    You may know, breast cancer comes in many forms and the type one has (ER+, PR+, ER/PR+. HER-2+, triple negative, triple positive,  inflammatory, IDC, ILC, DCIS and on and on and on), dictates the type of treatment - in most cases.  It is not a one size fits all disease, not unlike endometrial cancer, but I think breast cancer has more KNOWN variables.  You will find that your next door neighbor's breast cancer may have been treated differently than your DIL, cousin, friend, aunt,mother, etc. and might wonder why, but it's probably because they had different types.   It's really hard to guess what type of treatment lies ahead for your DIL, whether she will receive the same cocktail she had previously or not.  It is a pretty common cancer and still can be a deadly one.  New data is always coming out because in spite of all the noise about not enough money for research, breast cancer is one of the better funded programs.   It all too often is an awful disease and just because it was caught in an early stage, does not guarantee cure, although the cure rate for the early stages are really good. No one seems to know why it will lie dormant for years and years and years and then decide to bloom.  Tamoxifen is a really good drug for premenopausal ER+ breast cancer folks.  Patients who refuse to take it should really weigh the risks vs. benefits.  The new studies now show a greater survival rate with 10 years of Tamoxifen.  The same for postmenopausal women on aromotase inhibitors.   I'm coming up on 5 years and I'm not sure I'll take it for 10, but I will discuss it.  My oncologist seems to think it would be a good idea.   There is no guarantee either way.  It's a stupid, ugly, mean disease.

    Hoping for the best for your family.  Sounds like some tough times ahead.  Do they have children?

    Suzanne

  • debrajo
    debrajo Member Posts: 1,095 Member
    #13
    Double Whammy said:

    Different types of Breast Cancer

    You may know, breast cancer comes in many forms and the type one has (ER+, PR+, ER/PR+. HER-2+, triple negative, triple positive,  inflammatory, IDC, ILC, DCIS and on and on and on), dictates the type of treatment - in most cases.  It is not a one size fits all disease, not unlike endometrial cancer, but I think breast cancer has more KNOWN variables.  You will find that your next door neighbor's breast cancer may have been treated differently than your DIL, cousin, friend, aunt,mother, etc. and might wonder why, but it's probably because they had different types.   It's really hard to guess what type of treatment lies ahead for your DIL, whether she will receive the same cocktail she had previously or not.  It is a pretty common cancer and still can be a deadly one.  New data is always coming out because in spite of all the noise about not enough money for research, breast cancer is one of the better funded programs.   It all too often is an awful disease and just because it was caught in an early stage, does not guarantee cure, although the cure rate for the early stages are really good. No one seems to know why it will lie dormant for years and years and years and then decide to bloom.  Tamoxifen is a really good drug for premenopausal ER+ breast cancer folks.  Patients who refuse to take it should really weigh the risks vs. benefits.  The new studies now show a greater survival rate with 10 years of Tamoxifen.  The same for postmenopausal women on aromotase inhibitors.   I'm coming up on 5 years and I'm not sure I'll take it for 10, but I will discuss it.  My oncologist seems to think it would be a good idea.   There is no guarantee either way.  It's a stupid, ugly, mean disease.

    Hoping for the best for your family.  Sounds like some tough times ahead.  Do they have children?

    Suzanne

    Hi

    Hi Suzanne,  I have herd that breast  cancer   has more variables then any other cancer, probably like you said, it's better researched.  She took the Tamoxifin for 5 1/2 years thaen made the decision to stop.  She just hd her port taken out last yer.  Whether it had anything to do with it or not, the return cancer, acording to the Dr.'s, she has had it about 4-6 months.  Probally just a coinsedence , but it makes her think she made the "wrong" decision.   The Dr.'s never mentioned n hysterectome, I guess due to her age, 34.  This a second marriage for both of them.  She does not have children of her own.  She spent her time getting her Doctorate degree.  She is very creer oriented.  My son hs three children of his own, two boys and a girl, nearly grown.  When he comes in from Saudi they take the children on fabulous vactions.  She seems to be ok with not having biologal children.

    I believe it will be some what of a rocky road, but she is one tough cookie.  I thing she is more mad than scared and since she's no newbie this time she is going to "wipe tail and take names"!  Thanks so much  all of you!

     

    P.S.  Forgive the spelling, can't get spell check to work and my "A" isn't working on the key board unless I punch it!  

     

    Debr

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