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Galina2 
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Joined: Nov 01 2007 Location: Canada Status: Offline Points: 250 |
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 Posted: Aug 20 2008 at 8:52am |
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Maybe they want to cheer me up? I am still here, huh!
Or telling me: Why did YOU make IT?
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Believing is 50%!Dx 7/10/07, Lumpectomy 8/24/07, double mast/no recont. 10/01/07, IDC, 3 cm, Grade 3, 0/4 nodes, Stage IIA, ER-/PR- HER2- Age 48, chemo 11/23/07 lung spots 3/08
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ForAuntie
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Joined: May 07 2008 Location: United States Status: Offline Points: 11 |
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Posted: Aug 20 2008 at 9:08am |
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Good Afternoon:
My aunt has been battling tnbc for a year and a half now - chemo, mastectomy, radiation - mets to her lymph nodes and lung. Nothing has been effective. We are considering alternative medicine - has anyone heard of the Orange County Immune Institute in California or any of the centers found in Mexico... Thanks. Strength to all of you! Milaine
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Diag. 2/07
Lumpectomy: 3/07 Maste. right breast 7/07 Mets - lymph nodes/lung Last treatment - Ixempra/Neulasta |
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cg---
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Joined: Jul 20 2007 Location: Canada Status: Offline Points: 1379 |
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Posted: Aug 20 2008 at 9:47am |
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Dear Milaine,
I do not know anything of these institutions but look at www.quackwatch.com and see if they are listed. Perhaps get a second opinion from a NCI accredited hospital before somewhere unsubstantiated.
Please let us know what chemo has been tried...and if you want to look at complementary treatments along with mainsteam medicine(unfortunately I know one very knowledgeable lady is on a cruise one and she has a wealth of information regarding stage-IV disease) and goes to a Cancer Center of America. See what they may have to offer. I know that they do not accept all insurances...but I do know they have mainstream and other supportive treatments along with the usual medical protocols.
I just fear that your aunt and her money leaving her will have more activity than her cancer spread being halted or improved if the alternative therapy place is not giving effective treatments.
There are many women who have battled stage-IV metastases for years...please do not give up hope or your money too quickly.
Connie
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riccardgrp
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Joined: Aug 08 2008 Location: United States Status: Offline Points: 13 |
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Posted: Aug 20 2008 at 9:59am |
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PM,
I am also a caregiver. My wife dx 08/01/2008 tnbc grade 3. It is so important that we are ever so strong for the ones we love. I can tell you that what ever path our lives lead it is so much stronger to do it with the ones we care about the most. I have cried with her and with out her. But I make every attempt to not let her see it getting to me. I have got to be strong and positive for her and the children. As you do for yours. We completed the bone scan last week and got the first bit of good news since the dx. Bone scan clear. :):):)We did the cat scans today and are awaiting the info on that. She is scheduled for the bilateral masc on Friday . I am on pins and needles right now just waiting to her about the cat scan. The journey is just beginning for us. Stay strong and god bless.
Bill
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bill riccard
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cg---
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Joined: Jul 20 2007 Location: Canada Status: Offline Points: 1379 |
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Posted: Aug 20 2008 at 10:14am |
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Dear Bill,
Good news on the clear bone scan. Many people do not realize how with each scan...our stomachs migrate up to our throats and we seem to hold our breath until we get the results.
Just keep holding her hand Bill and your wife will feel the strength and love pouring into her.
It is very exhausting being strong for everyone...so if you are overwhelmed please come here, speak all your fears, ask all your questions and we will try to help you through your wife's treatments.
Connie
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riccardgrp
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Joined: Aug 08 2008 Location: United States Status: Offline Points: 13 |
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Posted: Aug 20 2008 at 10:22am |
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Connie,
Thanks so much for the support. All of you are incredible women. While I am sorry that there are so many of us it is awesome that there is a place for open communication and support. The internet can be a scary place but a wonderful place when put to good use like this forum. All of you are in my thoughts and prayers. Booboo has been discussing wether to cut her hair or just let the cards play out when she starts chemo in 3 weeks. My advice to her for what it is worth and to all would be not to allow bc or chemo take their hair from them but to do it on your own terms. She decided it was going to be her decision to cut her hair and was going to do it on her own terms not because of chemicals. She looks great.
Bill
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bill riccard
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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: Aug 20 2008 at 10:37am |
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Good for Booboo and I bet her hair does look great!
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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cg---
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Joined: Jul 20 2007 Location: Canada Status: Offline Points: 1379 |
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Posted: Aug 20 2008 at 11:09am |
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You know something Bill....a lot of physical changes will be happening to your wife, hair loss, mastectomy incisions, drains, etc.
When you look at her remember the moment you fell in love with her and that will show on your face and in your eyes...because even though my husband has not made me feel different in any way....I saw in his eyes the 1/millionth of a second look that passed through his eyes the first time he saw the mastectomy incision. Women are really quick to pick up on those kind of things...I saw the pain in his eyes.
It is not intentional but it is more a physiologic response - so just take a walk back through your mind and get that image right up front.
Good for you for making her feel empowered to cut her hair on her terms!
Connie
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ForAuntie
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Joined: May 07 2008 Location: United States Status: Offline Points: 11 |
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Posted: Aug 20 2008 at 12:54pm |
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Thank you for your insight. She is so weak - can't keep food down - in pain daily, she's 5 feet 6 and she's down to 115 pounds. We've taking her to the clinic every other day to get an IV to keep her strength. Right now, they won't consider more chemo until she gains some strength to handle it. We are still very hopeful and are nowhere near giving up this fight - the traditional medical care wore her out. So we thought in the interim we could try the alternative care to see if it would help her regain some strength. I will get the list of the chemo treatments she's gone through 4 different rounds (I think Abraxane, Ixempra, Neulasta are some of the names)plus the radiation. Thank you for the website as well. We are staying strong for her & I know she has it in her to fight for herself and for her 4 kids. Be Blessed. Milaine
Edited by ForAuntie - Aug 20 2008 at 12:54pm |
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Diag. 2/07
Lumpectomy: 3/07 Maste. right breast 7/07 Mets - lymph nodes/lung Last treatment - Ixempra/Neulasta |
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zenrookie
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Joined: Apr 12 2008 Location: United States Status: Offline Points: 29 |
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Posted: Aug 30 2008 at 11:03pm |
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To Connie and all of you who have helped me with every word.
THe day after Labor day (this TUesday) is our second CT SCAN. The first one showed Susie was a very good responder, and it lifted the pressure that at the time I thought I could not survive under. IT affected the whole family that way. So, here we come again (reminds me of Dolly P song). And this huge hurdle or much needed insight (CT SCAN) will dictate a lot about how we will be doing. We are spending the night since a freak scheduling actually got us the next day in Nashville so we could meet the doctor and go over the CT scan together. The first time, the smack down of the cancer cells throughout her lymph nodes was so 'significant' that our main oncologist was addled. I won't say she takes pleasure in giving bad news; I think she just deals with it all that way since she has to give bad news all the time. She had to switch gears and actually (for the first time) Glow positive about the hit the cancer cells took from the first 3 months of chemo. Now Wednesday we will learn what now? Could the cancer have become resistant in 3 short months, or could it be a continuation of the first time? We of course don't know...but as you all know these things are the yardsticks from which we cling to. I know it is still stage IV and that TNBC is bad. But I've got some hope as opposed to when I started this loop. We'll find out, and are spending the night in nashville. I pray for everyone here and I so sincerely mean that. May good things start happening to all of us. Most Sincerely, PM |
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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: Aug 31 2008 at 5:16am |
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Our prayers and good wishes are with you and your wife. Be safe on your journey and you are right, may good things start happening to all of us.
We must believe.
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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Niques7
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Joined: Sep 19 2008 Location: United States Status: Offline Points: 15 |
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Posted: Sep 21 2008 at 5:50pm |
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did you have any problems with your bilirubin with liver mets? If so, how was that addressed?
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zenrookie
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Joined: Apr 12 2008 Location: United States Status: Offline Points: 29 |
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Posted: Sep 21 2008 at 9:07pm |
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From that post I gave in which they showed significant reduction in the lymph nodes and no organ entry, we have had a newer CT scan and the results were not a continuation of those good results. Above the waist, the lymph nodes are continuing to shrink. The ones in Susie's neck which were very thick and visible to the eye are completely cancer free. mostly that is the case with all lymph nodes above the waist. Below the waist. The Ct scan is showing the lymph nodes larger. It seems although responding above the waist in the lymph nodes, the lymph nodes especially in the groin are not reducing. In fact, there is now a "knot" for lack of a better term which you can feel with your hand in the groin (inguinal) lymph node on her right side. This is also the exact area where Susie is now experiencing pain upon walking. As if it is affecting a nerve. The doctors stay undecided...except for a comment that was sort of a throwaway at the end of a conversation where the doctor said if that stays that way (lymph nodes of inguinal stay enlarged) then she would think seriously about totally switching regimen. Scary for us since this regimen has seemed to work above the waist not just a little but a lot! As many may understand, our spirits are worse than the stock market. This has caused all the worst fears to return, a feeling of this could be real real bad couldn't it? Has anyone ever had something like this? My wife is tough in spirit and her attitude is the best most all the time. But I've noticed a quiet manner that tells me she is so scared. I am too, but since she is shy on forums like this, I am not! I'm not going to just sit and hang on doctors word only before I try and find out all I can. Could a pouch or pocket within the lymph system in groin area have dense concentration of cancer cells? I know I'm asking questions that you cannot answer. But the fear, the thought that it might not get any better than it is today. I'm so tired, we've been to hospital which is three hour drive one way because under chemo she had 101 degree fever and got admitted. Since last wednesday haven't had real quality sleep. Platelets too low last wednesday so they turned down her chemo. That hurt her. She wanted that chemo. We go this wednesday. then another CT on October first in which we so hope that those lymph nodes be reduced. Sorry for typing up a storm. May all of you be blessed and may good things happen to all of you. Most Sincerely, Paul. |
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Niques7
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Joined: Sep 19 2008 Location: United States Status: Offline Points: 15 |
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Posted: Sep 22 2008 at 11:37am |
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My mom is in the hospital right now trying to get a stent placed to allow her bilirubin to drain from her liver. I understand how you feel when she is in the hospital and can't get rest because of people coming in and out doing blood tests, vital signs, nurses, doctors etc. It's very frustrating when you know how important rest is to help recovery.
She was given platletes through tranfusion to keep them up. They were 9,000 and now are up in the 50,000 range.
Prior to the hospitalization, they had to give her platelets as well so that she could continue with chemo treatments. You should ask if your wife can have platelet tranfusions.
How low are her numbers?
Even if her platelets are ok, keep an eye on them because the normal is above 100,000, and below 50,000 is considered critical in the medical field. Edited by Niques7 - Sep 22 2008 at 5:43pm |
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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: Sep 22 2008 at 1:45pm |
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Hi Paul,
You two are sure having a tough time right now and it is certainly understandable. You sound like you are just worn out.
Do you know that it is important to the patient but also for the caregiver to get much needed rest?
I hope things improve for your wife soon, let us know how you are both doing.
If you are at any time concerned about your wife's treatment you can always get another opinion.
Is there someone who can share a bit in the care and support for your wife so that you can take a break occasionally?
I wish I had answers for you.
Prayers will be said in OK,
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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zenrookie
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Joined: Apr 12 2008 Location: United States Status: Offline Points: 29 |
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Posted: Sep 25 2008 at 4:48pm |
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I am tired. But support is being given. Our youngest girl is profoundly Autistic. She orbits her mother, so its hard or impossible to convey the concept to her that mom is sick. But we do pretty good and there are a lot of good people who probably would and eventually will do more to help as time passes. So, I am very grateful for the future aid that I am sure I will ask for. I'm grateful this week. Susie's counts were good enough to get her chemo. She is feeling better (her spirit is stronger) as opposed to dangerously low last week. So, I've already learned be grateful for right now, what is going right. This place is wonderful. And I'm so glad you and so many others have welcomed me. Thanks again, Paul |
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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: Sep 27 2008 at 6:33am |
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Paul
That is good news that Susie's counts were good enough to get her chemo. I'm so glad she is feeling better.
Paul going thru this rocky time I am sure you have found out there will be good and bad times until the treatments have accomplished their goal.
Sometimes one day at a time or even one hour at a time is all that we can do so don't be so hard on yourself. Things will work out.
It is also hard not to look off into the distance and wonder about what will be. We don't know that so do the best you can to save your energy and focus on today and yes it is very hard at times!!
Come here and talk to us anytime.
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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glenine
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Joined: Aug 29 2007 Location: United States Status: Offline Points: 21 |
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Posted: Oct 15 2008 at 3:13pm |
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zenrookie
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Posted: Nov 05 2008 at 7:04pm |
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Hi everyone. This is Paul (zen). Susie's husband. We've just returned from our trek to North Carolina and the meeting with Dr. Lisa Carey.
Dr. Carey accepted our request that she visit with us and for that I am grateful. Yet I believe even before we bought our airplane tickets, Dr. Carey pretty much had in mind what she was going to tell us and the role she was going to play both for us and for our hunting that second opinion.
To skip right to it. The meeting was a brief one. No blood taken, anything for that matter. She was polite enough to give some of her valuable time to speak to us, and her main focus was to be very truthful. Very Blunt. And that is what she was and that is how the entire meeting went. Barely lasted over 30 minutes after we got to see her.
The bottom line, Dr. Carey told us. Is there is no crystal ball. Thus, the reason our Vanderbilt doctor cannot be more certain in selecting the chemotherapy. In many respects it was almost identical to the first time the doctors at Vanderbilt came in and gave us the verdict; which is that this is an incredibly hard type of cancer to beat. There are no silver bullets, and she even took what I think she felt was necessary to remind us that for many with this level of triple negative with metastasis; two years seems to be the average. It was almost a TOUGH LOVE type of visit. Kind of a message that you can travel all around the country, if you choose too, but the treatments are all known by all these good medical centers and none of these doctors have a "crystal ball" to tell whether one regimen or drug will work over another.
She did not do this to be cruel. Not at all. It was more face the reality of this disease state kind of tone. But Susie's tears began to fall as we realized this little discussion was it. Our whole trip to UNC was for a half hour of a generous and smart doctor fighting triple negative to remind us that even with a variety of medical centers and different arsenals; the life expectancy is not good. And we are all trying to do the best we can.
Of course we had a small piece of hope for something magic. That's why we flew to UNC. She just was practical enough not to waste our time, run unecessary tests, etc. But it was very deflating. I would be lying to you all if I didn't say that. She used that 24 month number again as we've heard before. So, despite the fact this doctor was extremely kind to let us make this flight in order to hear this from another respected doctor, we left the medical center and headed back to the parking garage to our rented car extremely sad. Feeling foolish even. Our youngest child has an Autism disability and therefore neither of us wants to leave this Earth because we want to protect her for her life. So its not just my wife or I. I would trade with her so my daughter could have her mother for a long time. So, we went back to our hotel room and for hours without words, we just "spooned". Held hands. In relative silence. We will not surrender, you can count on that. But cannot some cases of remission occur just as mysteriously as when the cancer descended? Forgive my mental state tonight. If we had not gone to UNC, we would have been at MD ANderson and I feel they would have given our Insurance a nice spin with tests and other things; only to come back with the same type of delivery. In that regard, Dr. Carey performed that role. I doubt we will go anywhere else. It showed Vanderbilt is right there with all the other good centers. But quality of life; given this terrible life span prediction, is important. Before we balked the first time at Vandy, they were going to give some of the harsher chemos to Susie right around her most important time of year; for her spirit!!! Navelbine seems to be doing well, at least for now. And nobody knows the future. But I think our travelling is over. We will work with Vanderbilt, and we will focus, pray and wait for an against the odds remission. Sorry for going so long. We just had to get bonked in the head to realize the doctors are smart, but cannot themselves know which chemo will cause which results for a particular individual. I want to thank all of you for your support. As the days go on, I will be still glad we made that trip. Love to you all.. PM (zen)
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krisa
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Joined: May 21 2008 Location: Portland, OR Status: Offline Points: 1090 |
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Posted: Nov 05 2008 at 7:23pm |
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Thank you Paul, for letting us know. I will keep you and Susie in my prayers and hope for a miracle!
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