Unfortunately it didnīt helped......
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Topic: Unfortunately it didnīt helped......
Posted By: Dane
Subject: Unfortunately it didnīt helped......
Date Posted: Nov 01 2009 at 7:23am
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Hi,
Sorry it has been a while, since I have posted on this website. After being cancer free for 1 1/2 year, I got a chok. I have been following Jane Plants book, about healing cancer by avoiding all kinds of dairy, meat etc. But it didnīt helped. I got a regular PET/CT scan for follow up (sep 09), and I got really bad news. The cancer has returned in my bones and lungs. To begin with I was really bad, couldnīt breath, couldnīt walk 5 min because of bad breathing. Mentally I have been really down. I am on chemo again CMF (a 20 year old chemo)so I am just thinking can that help. But I have heard that the combination is good for triple negative. After receiving chemo, I am now feeling much better. I walk every day for 20 min without difficulties, so I see that as a good sign. Mentally I am up again. A person, who unfortunately is not here any longer because of breastcancer, told me: We have one road to walk on, try to walk that as positive as you can. That has helped me to climb up again from the darkest hole. I hear this song too, that really tells me to fight, and that there will always me another mountain to climb. http://www.youtube.com/watch?v=NG2zyeVRcbs. The thing who makes me really sad, is that if not a miracle is going to happen, I will not be able to see my three kids grow up (9, 7, 4). I know that I will not be here for them, so therefore I have started to record my life on a tape. I tell them things that only I know, I tell them about everything, so when I am not here longer they can listen to the tape and know a lot about me, also in the future. Take care all of you, I just wanted to share my story. Dane (Rikke) ------------- 07/06:33 BC ST.1 NO nodes Chemo:AC-T 11/06:BRCA1+ 02/07:Mastec 07/07:Hysterec.+recons. 03/08:Recur.supraclavicular /axilla nodes chemo:Xeloda/Ixempr 09/09:Mets to bones & lungs. |
Replies:
Posted By: Roxanne
Date Posted: Nov 01 2009 at 7:43am
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Oh Dane, I am so sorry for all that you are having to go through  . What a beautiful gift you are giving to your children in the video of your life. I lost my mom 5 years ago and realized after she was gone how much I didn't know about her. Your children will treasure that always and I will be praying that you will ALL be watching it TOGETHER for many years to come.Praying for your strength and peace, Roxanne ------------- DX 1/09 Metast. Adenocarcinoma Stage IIIb Grade 3 TNBC BRCA 1/2 Neg. Lumpectomy & Ax. Node Dissect. 4 Tx A/C finished 5/09 12 Tx Taxol finished 8/09 35 rads finished 9/09 |
Posted By: SagePatientAdvocates
Date Posted: Nov 01 2009 at 8:38am
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Dear Dane, I was deeply saddened to read your story and I think what you are doing for your children is very important. Two weeks from today I will be visiting my mother's younger sister who almost 40 years after her original dx of breast cancer and a Halsted Radical mastectomy has breast cancer again and is quite ill. I live in Los Angeles and she is in New York. I decided to being a picture of my mother and myself that I don't think she has seen that is 52 years old(I am 65). My mother passed when I was 20 and she never saw any of her grandchildren-I have six children. This was a woman who adored children and I wish a tape existed so that my children could see and hear the essence of my grandmother in her own words instead of hearing it from me. I, also, have very few pictures of her. I do have one suggestion that may turn out to be mission impossible and that is to talk to your oncologist about PARP inhibitors, a new class of drug, in clinical trials, that seems to hold some promise for women with triple-negative-breast-cancer, especially those with our BRCA1 mutation. With the BRCA mutation, as I am sure you know, our DNA repair function is seriously impaired and PARP seems to help and is being tested in combination with several chemos. The following is a list of clinical trials from http://www.clinicaltrials.gov/ct2/results?term=parp+inhibitors+brca (Dane, I am sorry we are having problems posting links so please cut and paste this and enter it in the search bar of your browser and then it will come up) I have posted studies that are complete in this country because they may be open or will open in Europe. The original discoveries and development of PARP inhibitors was done in the UK so I am hoping something is available there if not in Denmark. Please try to look into it and see what your oncologist says.
 http://www.clinicaltrials.gov/ct2/results?term=parp+inhibitors+brca&show_flds=Y - Display Options
Dane, good luck to you and thank you for sharing your beautiful plan with us. Please stay in touch. you will find that we will always be here and will open our arms to you with our love. You shall be in my prayers...and if you can, please try to stay as positive as you can and try to find the joy in each day. I know that will be a monumental task some days but I believe it will help you and your children on this anguishing, arduous journey. thank you again for sharing, Steve ------------- I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates |
Posted By: Donna Z
Date Posted: Nov 01 2009 at 8:53am
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Hello Dane. My heart goes out to you and your family. I hope and pray the chemo you are on works and there is a clinical trial for you. That is my favorite song as well. It describes in a way how one feels on this rocky path, that there is always going to be another mountain and it is all about the journey. Thank you for sharing your idea about recording for your children. I too hope you will listen to it together for years to come. Donna ------------- Dx 03/09 TN, Stg 2a, gr 3, 1.7 cm Taxol X 12, FAC X 4, segmental mastec Sept 10/09, 1 pos/29, from Canada, Treatment MDAnderson, rads X 30 started Oct 29/09. Zometa start Nov 24/09 |
Posted By: dmwolf
Date Posted: Nov 01 2009 at 11:01am
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Dane, you are a such a sweet, good person. What a terrible shock you have received. What a hard road to travel, and you are clearly walking it with a lot of love and grace. Making those recordings is a great idea, though I hope and pray that your kids won't need to listen to them for a long, long time, after they are grown. Much luck with this new chemo. It is great that you are feeling better and walking lots again. Love, Denise ------------- DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10. |
Posted By: trip2
Date Posted: Nov 01 2009 at 3:24pm
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http://www.clinicaltrials.gov/ct2/results?term=parp+inhibitors+brca - http://www.clinicaltrials.gov/ct2/results?term=parp+inhibitors+brca
------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: trip2
Date Posted: Nov 01 2009 at 3:26pm
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http://www.clinicaltrials.gov/ct2/results?term=parp+inhibitors+brca - http://www.clinicaltrials.gov/ct2/results?term=parp+inhibitors+brca
Hi Dane,
I am so sorry you going thru this and all my wishes the new chemo will work for you.
I keep hope handy in my thoughts because any day something new could pop up around the corner.
Best wishes, ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: TNBC_in_NS
Date Posted: Apr 01 2010 at 5:28pm
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Dane:
I just listened to Miley Cyrus' song "The Climb"! It was brilliant! Thanks for sharing it with us.
Here's hoping that this note finds you in good spirits. Keep us posted as to your journey because we are right there with ya! God Bless, your sister on the journey (climb) Helen in NS ------------- Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear |
Posted By: Lea297
Date Posted: Apr 01 2010 at 9:09pm
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Dane -
I was so sorry to read your story. What a beautiful gift you are preparing for your children. I too recently found out that my triple negative cancer returned and it had matastized to my L5. I had 20 tx of radiation and now have started a chemo called Zeloda. My understanding of this chemo is that it is given to breast and colon cancer pts who's previous txments did not work. I will also be getting Zemeda (I think that is how you spell it). In the meantime, I have been put on the waiting list for PARP inhibitors. I hope in the meantime I find the strenght in your words to do for my son what you have started for your children.
Your in my prayers.
Lee Ann in FL
5 cm Stage 3 5/08
1 positive lymphnode - lumpectomty 2 ACT, 4 Platnum/Taxol + Rad
Reoccurence 5 cm Stage 3 2/2010 - bilateral masectomy + Rad
Metastized to L5 ------------- 6/08 stage 3.lumpectomy, chemo and radiation. chemo (6/08) 2 ACT 4 platinum & taxol.**update: 2/10 reoccur- bi masect. metz to L5. and scapula now stg 4 rad,zomeda, bipar clinical trl |
Posted By: dmwolf
Date Posted: Apr 01 2010 at 9:20pm
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Hi, Lee Ann. I'm so sorry the beast returned. How did you figure it out? Was it just a routine scan? The good news is that it is just in the bone. Not that one wants cancer anywhere, but bone is best because it tends to be indolent. People walk around with bone mets for like 15, 20 years sometimes. Zometa should help heal the bone, and prevent other bone mets from popping up or moving fast. And it has almost no side effects. be well, Love, Denise ------------- DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10. |
Posted By: Lea297
Date Posted: Apr 01 2010 at 10:53pm
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Hello Denise - thanks for your reply. Both the first diagnosis and the reoccurrence were just by me knowing something wasn't right. Niether were picked up by mammo's. I had a PET scan done in Oct. that was clean and by the end of Nov. I had a 5 cm cyst in my breast. They told me at first that because it was a local reoccurrence that was good but then I had another PET scan and it showed the spot on my spine. Thanks for the information on the Zometa! I have had some people approach me about if I was on a special diet - I was reading about going organic - any suggestions? Thank you again,
Lee Ann ------------- 6/08 stage 3.lumpectomy, chemo and radiation. chemo (6/08) 2 ACT 4 platinum & taxol.**update: 2/10 reoccur- bi masect. metz to L5. and scapula now stg 4 rad,zomeda, bipar clinical trl |
Posted By: Dane
Date Posted: Apr 05 2010 at 6:38am
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Sorry to inform, but my love died Feb. 14th from her canser,
Rikke is now will always be missed Dane's hustban ------------- 07/06:33 BC ST.1 NO nodes Chemo:AC-T 11/06:BRCA1+ 02/07:Mastec 07/07:Hysterec.+recons. 03/08:Recur.supraclavicular /axilla nodes chemo:Xeloda/Ixempr 09/09:Mets to bones & lungs. |
Posted By: Autumn10182001
Date Posted: Apr 05 2010 at 9:27am
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i am so sorry... may God be with you and your family at this time and always. ------------- DX2/99 Stg I,ER+PR+ Chemo lumpectomy - Neg nodes,rads, tamox,femara. DX4/09, Stg IIB /III, TNBC IDC, Grade III, 2.5CM, mastectomy. 4AC DD,12 wkly taxol,BRAC1&2Neg, Right Mast 11/25/09 |
Posted By: Lillie
Date Posted: Apr 05 2010 at 12:40pm
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Dear Rikke's husband,
Please accept my sympathy. I know you and the children will miss her a lot. Thank you for letting us know about the death of Rikke. She was a fighter. Love in Christ, Lillie ------------- Dx 6/06 age 65,IDC-TNBC Stage IIb,Gr3,2cm,BRCA- 6/06 L/Mast/w/SNB,1of3 Nodes+ 6/06 Axl. 9 nodes- 8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4 No Rads. No RECON - 11/2018-12 yrs NED |
Posted By: dmwolf
Date Posted: Apr 05 2010 at 3:19pm
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Dear Rikke's husband. I am so sorry for your loss. Would you say a few words about her life, or paste in her obituary summary? We'd like to make a tribute page for her in the tribute subforum, so her precious life and all she suffered can be remembered by this community. Love, Denise ------------- DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10. |
Posted By: dmwolf
Date Posted: Apr 05 2010 at 3:34pm
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Hey, I just went back to look at 'Dane's' posts to help me remember her, and wow, what a fantastic person. She was always very encouraging to others, very kind and forthcoming. She played her cards with a ton of grace, that's for sure. Did she leave a whole lot of recorded memories for her kids? She wrote about that here - they sound very special. You and your kids were lucky to have her. If at all possible, she will watch over you. Love, Denise ------------- DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10. |
Posted By: TNBC_in_NS
Date Posted: Apr 05 2010 at 5:50pm
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Dear Rikke's husband and children:
I am so sorry for the loss of your wife and mother. Please know that Rikke fought a great battle to stay here but it just was not to be. I hope Rikke was able to make the recordings she wanted to leave for you all. She was so concerned about not being here for you.
I believe Denise's request for Rikke's obituary is a good idea, because Rikke (Dane) posted some very nice notes here on our TNBC Family site and we would like to have a memorial page for her honor and her fight with us...so if there is some way we could get a copy that would be great.
Please know that we will keep you and your family in our thoughts and prayers and we are here for you, should you have any questions or concerns about Rikke's TNBC. God Bless you all,
Rikke's sister on the journey of TNBC, Helen in Nova Scotia, Canada ------------- Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear |
Posted By: 123Donna
Date Posted: Apr 05 2010 at 9:59pm
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Dear Rikke's husband, I'm so sorry for you and your family's loss. You must miss her terribly. Your family will be in our prayers. Donna ------------- DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15 |
Posted By: Dane
Date Posted: Apr 06 2010 at 3:35pm
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Hi Denise
Thanks for the nice words, and yes she left a lot of movie and voice recording where she tells about her childhood.. she now lives through our 3 kids, and they have all the same nice personality. My love was very very special and we will miss her a lot. Our frends from USA, made this movie from the time they visited us in Denmark: http://www.youtube.com/watch?v=zi-YdIx7E3w Love, Jan ------------- 07/06:33 BC ST.1 NO nodes Chemo:AC-T 11/06:BRCA1+ 02/07:Mastec 07/07:Hysterec.+recons. 03/08:Recur.supraclavicular /axilla nodes chemo:Xeloda/Ixempr 09/09:Mets to bones & lungs. |
Posted By: SagePatientAdvocates
Date Posted: Apr 06 2010 at 3:59pm
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Dear Rikke's husband, You wife was a very special woman and I have no brilliant words other than to say I am truly sorry for the family's loss. I am BRCA1+ also and passed it along to my daughter. I lost my best friend of 50 years to cancer several years ago. A bereavement specialist who helped me through my friend's final journey suggested I get a book/CDs called "Graceful Passages." There are different passages, some religious (various faiths), many not and I found it to be very helpful as I grieved. If you send me a PM with your address I would be happy to send this to you as a gift. you have my sincere condolences..thank you for letting us know. Steve ------------- I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates |
Posted By: TNBC_in_NS
Date Posted: Apr 06 2010 at 4:34pm
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Jan: I just watched the lovely video of your Rikke and it was beautiful! Rikke was very special to you, I can see that in her eyes. Be happy for the times you have spent together and know that she will always be in your heart no matter where or what you do. Do not let the grief take over your life, live like she is with you always and enjoy your children because they are a part of you both and she lives on in each of you! Thank you for sharing this video with all of us,
With Love to you all, a sister on the journey, Helen in Nova Scotia, Canada ------------- Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear |
Posted By: Autumn10182001
Date Posted: Apr 06 2010 at 5:14pm
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Thank you for sharing your very special video.. I write this through tears, tears for a woman I never met... tears for your loss... tears for a woman who passed much too young. May God be with you and your family... may you always feel her arms around you, and know that she is always with you. Autumn ------------- DX2/99 Stg I,ER+PR+ Chemo lumpectomy - Neg nodes,rads, tamox,femara. DX4/09, Stg IIB /III, TNBC IDC, Grade III, 2.5CM, mastectomy. 4AC DD,12 wkly taxol,BRAC1&2Neg, Right Mast 11/25/09 |
Posted By: dmwolf
Date Posted: Apr 06 2010 at 5:58pm
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I'll post all this on Rikke's tribute page in the Tribute Subforum. Thanks for caring, everyone, and if you find other things you'd like to post, please put them in her special page, ok? love, Denise ------------- DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10. |