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Old 02-13-2010, 08:43 AM   #1
Skip
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Join Date: Feb 2010
Location: Riverside, CA
Posts: 19
Smile I'm trying to think positive

I'm trying to get my wife to think positive, showing her the info on Herceptin, last night I read her some of the member stories and their Dx. Its not working, she still believes nothing is going to work because it was caught too late. She's been to two support group meetings and one phone conference.
To make things worse, her sister lost her battle with cancer and died yesterday.

Last year my Mother was dx with lung cancer and shes responding well to treatment.Last week my sister went through surgery for colon cancer and we are waiting for the Path. report, I hope its good news.

If anybody has any spare positive thinking laying around
and don't think they will need it. please send it my way

Thanks
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Old 02-13-2010, 11:50 AM   #2
Westcoastgirl
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Location: Canada
Posts: 128
Re: I'm trying to think positive

Skip, we have all been where you and your wife are but my goodness you two have had more than your share of grief to deal with in the last wee bit of time. It helps us to know more about your wife's cancer so people can respond in kind. See our signatures below our responses. I found it helped a lot to speak/write to long time survivors with a similar diagnosis to mine. This site is invaluable for support and information. You could not have come to a better place. I have met so many women that are stage IV during my travels with my breast cancer and have been amazed at their attitudes. They have helped me more than I could ever help them. I have made it a bit of a hobby to collect examples of stage IV cancer survivors that are years and years out from diagnosis. So far my "best" find is 20 years out so you see there is hope even in those situations that seem dire. Every year our chances get better and better. One piece of good advice I got at the beginning was to realize the research on the internet is about ten years out of date. Here you will find the cutting edge results. Please read through the site here and you will see that many have fought the good fight and are still living and breathing warriors. There are many books out there about cancer that talk about positive attitude and how beneficial it is in the fight against cancer. Do you need some titles? Take each day as it comes and know that there will be sad days. I cried often at the beginning and felt hopeless and still feel sad some days but must say the times I laughed and felt joy far outnumber the bad days. I don't like the cliches of breast cancer was a gift....good grief....who would want it but the truth of the matter is my perceptions of what is important in life, how dear my loved ones are has come home to me and I fret about those small things in life so much less. I glory to feel the wind and see the sun. Just be patient with your wife, listen, hold her and she will begin to see the light. Take care.
__________________
12/17/08 biopsy after two 6 mos mammo recalls
12/30/08 diagnosed high grade IDC & DCIS
ER/PR +, Her2 (+++) post menopausal/age 57
1/15/09 double mastectomy/skin sparing; no evidence of vascular/lymphatic invasion, 8neg/8 nodes (tumor 8.0mm)
2/16/09 given portacath/removed 4/30/10
2/18/09 "surprise" 2.0mm tumor/positive borders~
completed 28 rads 10/09.
2/23/09 until 4/19/10~treatments every 3wks (4 Cytoxan + Adriamycin, 4 Taxol + Herceptin, 13 Herceptin alone)
8/09 osteoporosis diagnosis/Zometa 3 yrs of 1x/6 months
Chemo side effects; Deafness, kidney function loss
11/09 began Aromatase Inhibitor (Femara)/Feb2014, stopped Femara early/after 3 mos began Tamoxifen for 8 mos to complete 5 years
11/10 Reconstruction, directly to silicone implants
12/11 nipples by skin graft/Right breast size reduced

I have heard th
ere are troubles of more than one kind

Some come from ahead and some come from behind.
But I've bought a big bat. I'm all ready you see.
Now my troubles are going to have trouble with me!
Dr. Seuss
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Old 02-14-2010, 01:07 PM   #3
Colleens_Husband
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Location: Oregon City
Posts: 856
Re: I'm trying to think positive

Hey Skip:

I am sorry you had to find this community but I am glad that you are here and you are doing everything you can for your wife.

One of your jobs as a caregiver is to be a gatekeeper of information. You will find it is very difficult to belong to the Cancer Channel, and by that, I mean cancer 24 hours a day, seven days a week. Sometimes, as a male person, one will have a tendency to try to fill a thimble with a fire hose when it comes to dealing with cancer. Your wife is in this for a long haul and you will have ups and downs. You need to be positive where you can get away with it and you need to be a bit sneaky about re-introducing positivity to your future.

You need to remember that there are three different phases of history in dealing with HER2 cancer. There is the pre-Herceptin phase, which meant you are probably going to die if you got HER2 cancer. That is no longer the case, and any information about this cancer before Herceptin is less than useless. It just scares people.

This phase in history is the after-Herceptin phase. Everything is different now. You can expect miraculous recoveries in a whole lot of cases which people thought were hopeless prior to Herceptin.

The next phase in the history of HER2 cancer may be the TDM1 phase, which is a magic HER2 cancer killing magic bullet that seriously kick cancer butt. This may be what makes HER2 cancer deaths a very rare occurrence. Your wife doesn't have to survive forever. She just needs to last long enough for her miracle drug to become available.

Never give up. People survive this every day, and there is no reason to believe your wife won't be one of those people.

Skip, please take excellent care of your wife and your family. She is going to need you to be strong. Please know that you are not alone and that you will be in our hearts and prayers.

Lee
__________________
This happened to Colleen:

Diagnosed in September 2007
ER-/PR-/HER2 Neu+++ 2.1 cm x .9 cm spicluted tumor with three fingers, Stage 2B
Sentinal node biopsy and lymph node removal with 3/18 positive in October 2007
4 TAC infusions
lumpectomy March 2008, bad margins
Re-excision on June 3rd, 2008 with clean margins
Fitted for compression sleeve July 16, 2008
Started the first of two TCH infusions August 14, 2008
Done with chemo and now a member of the blue dot club 9/17/08
Starting radiation October 1, 2008
life is still on hold
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Old 02-14-2010, 01:36 PM   #4
Skip
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Join Date: Feb 2010
Location: Riverside, CA
Posts: 19
Re: I'm trying to think positive

Thanks Westcoastgirl. I'd like a list of books to read, the more good information we get the better. My wifes Dx should show up now, thanks for the tip.
I have read to her some of the members survivor stories and she thinks that its something that happens to other people not to her. I really need to get her thinking positive. I know it will help her in the battle aginst her cancer.

Do you know of more stage 4 her2+ survivors? Do they have blogs or postings here? Will you send me a link? 20 years out that is great news!

I know it will take time for her to get positive. If she gets some good news next week it will help her a lot. If her markers go down and shes not in as much pain after chemo I belive her outlook will change.

Thank you all for your support and prayers.
__________________
Wifes Dx:
Found tumor 11-09
Biopsy 11-09 positive: IDC Stage 4 grade 3 Her2 +, 3 nodes of 16 positive.
Surgery 12-09
CT scan: liver mets
MRI of Head: clean
Bone scan: clean
1st treatment: 1-28-10
Taxotere & Herceptin every 21 days
6 rounds of Taxotere
Herceptin every 21 days (on going)
Liver mets...GONE!
CT scans,bone scans & MRI's NED
NED to date
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Old 02-14-2010, 02:36 PM   #5
Westcoastgirl
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Location: Canada
Posts: 128
Re: I'm trying to think positive

Hi Skip,
I am up here in Canada so things are slightly different but I know you have similar organizations in the states. When I was first diagnosed I phoned our Cancer Agency and asked to be included in a program they call Cancer Connections, where you are matched with a cancer volunteer that calls you and can talk with you for as long as you want. I have been told you have the same program in the states. I was matched with several women that had the same diagnosis as me and were long time survivors....the longer the better. They searched all of Canada to find what I wanted. I have been in contact with one woman for over a year. She calls me regularly and I have found her a huge inspiration as her bc was far more serious than mine. I am sure this would help your wife. She needs to know that there is hope. Lee, known as Colleen's husband, my husband and I found to be an inspiration at the beginning of this journey. He was able to put all the information out there into proper perspective for us. I posted here and asked for those women that were survivors to write to me. I got tons of responses. I think one woman asked me to search "Dancing with Ned" (no evidence of disease). I know there is one thread right now that has asked for good news. Perhaps you could post in the Herceptin section and you will find many more women with much more to offer will respond to you. If you read the postings here and look at their signatures (the part at the end that you have now added) you will see that there are tons of women that are stage 3 and 4 that are here and have been doing well for a very long time. I am good friends with a woman that is stage 4 colon cancer that has gone to her liver. Her treatment has brought her tumor markers from a huge number down to within normal. I have another friend stage 4 ovarian cancer that has also brought her tumor markers back to normal with treatment. I could go on and on with those stories, really. I have read over and over that liver mets are treatable. The liver can regenerate itself and often the mets will encapsulize and can be operated on or sometimes just simply turn into scar tissue. There is so much to live for and hope for in your wife's case. It seems to me in my readings that the liver is often the first place that they find mets and your wife's other tests were clean which is wonderful. She truly has much to hope for. The Healing Journey by Alastair Cunningham is available on line for free and the author that I love is Bernie Siegel. He wrote Love, Medicine, and Miracles amongst many books and it was before Herceptin so now there is even more reason to believe that your wife will live to enjoy old age with you. I do encourage you to go to the Herceptin section and ask for women that are stage 3 and 4 to write to you and you will see as I keep repeating....there is much to hope for, much to help you feel positive. I did suffer a lot with pain but that is all over now and it helped to know that each time it got easier. It also helped to know why I had pain. My husband has found this much harder to deal with than me, has suffered a lot with anxiety so I suggest to you that you need support in all of this as well. I often think as the one with bc I have little choice but to move forward with treatment, pretty black and white but my husband often feels helpless and I have come to see the care giver's job is very, very tough. I did not like my onc at all at first. I found him cold and distant and I was vulnerable and scared. As I said I began to keep records of all tests, blood work, etc and it made me feel more in control. I grew to like my onc after many months and came to appreciate that he quoted research as that is what it all comes down to doesn't it. Please reach out to others on here in the Herceptin section and you will find so many that have come so far and it will give you the hope you need. Take care.
__________________
12/17/08 biopsy after two 6 mos mammo recalls
12/30/08 diagnosed high grade IDC & DCIS
ER/PR +, Her2 (+++) post menopausal/age 57
1/15/09 double mastectomy/skin sparing; no evidence of vascular/lymphatic invasion, 8neg/8 nodes (tumor 8.0mm)
2/16/09 given portacath/removed 4/30/10
2/18/09 "surprise" 2.0mm tumor/positive borders~
completed 28 rads 10/09.
2/23/09 until 4/19/10~treatments every 3wks (4 Cytoxan + Adriamycin, 4 Taxol + Herceptin, 13 Herceptin alone)
8/09 osteoporosis diagnosis/Zometa 3 yrs of 1x/6 months
Chemo side effects; Deafness, kidney function loss
11/09 began Aromatase Inhibitor (Femara)/Feb2014, stopped Femara early/after 3 mos began Tamoxifen for 8 mos to complete 5 years
11/10 Reconstruction, directly to silicone implants
12/11 nipples by skin graft/Right breast size reduced

I have heard th
ere are troubles of more than one kind

Some come from ahead and some come from behind.
But I've bought a big bat. I'm all ready you see.
Now my troubles are going to have trouble with me!
Dr. Seuss
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Old 02-14-2010, 04:21 PM   #6
Westcoastgirl
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Posts: 128
Re: I'm trying to think positive

Skip, do a search with "long time survivor".
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Old 02-14-2010, 04:36 PM   #7
chrisy
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Re: I'm trying to think positive

Hi Skip,

First of all, thanks Lee (colleen's husband) for the encouraging post. We all need that from time to time. Most of the time in fact!

Skip, its pretty hard to get your head around a Stage IV diagnosis - let alone your hope. That's without being surrounded with dear family members fighting other battles.

Your wife has really only just started actively engaging this battle - barely 2 weeks into therapy. I can only vaguely remember how I felt at that stage of the game. I know I cried a lot, and bounced around between disbelief, dismay, determination, denial, and doubt.

I, too, looked for hope wherever - probably the least successful place was the "mentor" from the local cancer center who was a long term ovarian cancer survivor. She was inspiring right up until she told me she had to drop out of the advanced cancer support group because it was all these women dying of breast cancer. Hello!!!!!???? What an idiot!

So not all "support" experiences are necessarily helpful.

There are long term survivors of Stage IV disease, including to the liver. Maybe your wife can just consider this: some people ARE "cured". Why not her.
You sometimes hear people talk about how it's bad to have false hope. I think they are wrong. Hope is good, and it's reasonable to have hope (since you KNOW there are already long term survivors - and there is so much exciting research in this area!) It's far worse to have false despair. I used to make myself laugh, realizing how stupid I'd feel if I lived another 30 years but wasted it all thinking about dying.

Try not to dwell on the worst possibilities (at least not all the time). Instead, try and imagine how WELL the chemo is working...while you wait for the proof which will come with the next scan.

You know, if she has liver-only disease, she may be a candidate for (curative) local treatment, too.

Right now, your beautiful wife needs to just put one foot in front of the other. Breathe in, breathe out. It's not necessary or even possible to have a positive attitude all the time.

Just allow the tiniest space for the possibility...

Do not lose heart,
Chris
__________________
Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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Old 02-14-2010, 06:38 PM   #8
Chelee
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Location: Southern, CA
Posts: 2,511
Re: I'm trying to think positive

Skip,
It's hard enough being dx with Her2 breast cancer...but being told your stage IV from the get go is so scary. I couldn't even think straight when I was first told...the places your mind go too. Your entire world is turned upside down overnight. There is just no way to explain it unless you have had to walk in those shoes. The wide range of emotions that consume you. Unfortunetly I can remember exactly how I was feeling...and it wasn't pretty. From crying to total meltdown at times. Nothing anyone said to me helped at first. I don't think I felt better until I started treatment--I was finally fighting the beast.

Be careful of the phone support. I tried 3 different organizations & it didn't work out for me. Biggest problem was they all promised to match me up with someone with my "same" dx. Wks would go by and they could never find anyone for me. (I was stage III, Her2 at that time) Well my fear was that, "there weren't any women for me because they all passed away." That is where my mind went & only validated my fears that I would not make it. (Even though I know better then that now.) So make "those" kind of calls for your wife and screen then carefully! This Her2 support board has helped me more then anything else.

I did want to mentioned there are several stage IV women here that have had mets to liver and are doing great! One of them is named Kim...user name is "mamacze". She had mets to lungs and liver in 2004 and is still "NED" (No evidence of disease!) Another is Colleen and she is 4.5 yrs out and doing well. Your wife is so blessed to have you by her side helping her thru this. Support is so important. Lets us know of any way we can help

Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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