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08-04-2008, 04:42 PM
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#1
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Senior Member
Join Date: Jan 2008
Location: Oregon City
Posts: 856
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How to be Supportive
Dear Friends:
To open up this new forum, I think it would be appropriate to ask the most important question for a caregiver; How can you be supportive? I would love to have any thoughts or ideas. Even from our brave warriors, what did you find supportive and what did we do that just annoyed you?
My hope is that this thread will be helpful to the spouses of the newly diagnosed and that each spouse doesn't have to start from scratch, and instead can learn from the experience of those who went before you.
Thanks for participating,
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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08-04-2008, 05:40 PM
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#2
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Senior Member
Join Date: Apr 2007
Location: LA LA Land
Posts: 1,607
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The things I appreciate the most (from my man):
Being willing to listen to me obsess over almost every issue concerning my treatment and survival.
Making me feel like a woman despite an interesting arrangement of my parts.
Telling me I'm going to be okay no matter how grim the news or how many times I ask him that question.
~Flori
__________________
1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.
3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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08-06-2008, 07:44 PM
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#3
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Senior Member
Join Date: Oct 2006
Location: Southern California
Posts: 900
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My husband:
Shaved my head for me when I was losing my hair and then told me how much he loved my new GI Jane haircut.
Went to every chemo appointment with me and always went out, bought me lunch and brought it back to me.
Ordered me to the couch every Sunday for a nap. I always protested, but was sound asleep within minutes.
Realizes that cancer has changed me forever, and he loves me even more because of it.
__________________
Gerri
Dx: 11/23/05, Lumpectomy 12/12/05
Tumor 2.2 cm, Stage II, Grade 3, Sentinel Node biopsy negative
ER+ (30%) /PR+ (50%), HER2+++
AC X 4 dose dense, Taxol X 4 dose dense
Herceptin started with 2nd Taxol, given weekly until chemo done
then given every 3 weeks for one year ending on March 16, 2007
Radiation 30 treatments
Tamoxifen - 2 yrs (pre-menopausal)
May 2008 - Feb 2012 Femara
Aug 2008 - Feb 2012 Zometa every 6 months
March 2012 - Stop Femara, now Evista for bone strengthening
********** Enjoy the little things, for one day you may look back and realize they were the big things. - Robert Brault
Last edited by Gerri; 08-06-2008 at 07:54 PM..
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08-10-2008, 12:17 PM
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#4
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Senior Member
Join Date: Jan 2008
Location: Oregon City
Posts: 856
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To me the number one thing about being supportive is to be with her for every single appointment. Share the good news and the bad news together. Make sure she knows she is not going to face anything alone.
The one exception is the radiology appointments, since you can't be in the room with her anyways and there are 35 of those, you can be excused from missing those. You should be at the first one though and meet with the radiology oncologist.
__________________
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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09-07-2008, 01:26 PM
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#5
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Member
Join Date: Sep 2008
Posts: 5
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Recently Diagnosed Her/2+
I am open to any suggestions on how I can be more supportive. I sometimes get the feeling that I am trying to do to much and am overstepping the boundaries. I am open to any and all suggestions.
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09-07-2008, 08:47 PM
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#6
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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From my husband: Whenever you have a chance to watch something on TV that is relaxing to you or whenever you have a chance to go somewhere to do something that you enjoy (such as hitting golf balls for 30 minutes or taking morning coffee at the donut shop...), do it.
He also mention some quotes of Paul from the Bible. And he thinks that a person who is stressed out would not be good in taking care of the patient (I can attest to that ![Smile](http://her2support.org/vbulletin/images/smilies/smile.gif) . Whenever you can, read books that give you the power of positive thinking. Always try to remember what previlege it is to be together and don't dwell on small (or big) things that are really not important.
This is a young man (now 51) who was going back to college to get his degree when his bride of 2 years had to undergo a 25-hour brain surgery, 10-day semi-comatose, and 30-day rehabilitation including speech therapy, physical therapy, and occupational therapy. Had to quit his graduate study when his wife got her first breast cancer. And had to juggle in between his Mother's Alzheimer's Disease and his Father's two hip surgeries in addition to his wife's recurrent breast cancer.
Yes, he did end up have to start taking anti-depressant about two years ago. And he takes way more pills than I do every day because of his heart disease. (two stents in his heart in 2002/)
In conclusion, take good care of yourself, caregivers. We love you and we need you. Please put yourself first.
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
Last edited by Jackie07; 09-08-2008 at 02:58 PM..
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09-07-2008, 09:02 PM
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#7
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Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
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Sheismyhero, you have come to the right place for answers and advice. This site is rich with information, from both caregivers and care-recipients. Please feel free to ask any questions and "open up". You will be treated as family here. (sometimes we squabble, though, as all large families do) You stated that you feel like you are trying to do too much and overstepping your boundaries. How so? If you feel like being a little more specific, I think we might be able to help more. Please keep in touch
__________________
For Nicola
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09-08-2008, 05:15 PM
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#8
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Member
Join Date: Sep 2008
Posts: 5
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Bill, Thanks for the warm welcome.
When she was first diagnosed with breast cancer, I felt I must educate myself on the subject. I found many great web sites and picked up several books.
I try to attend all appointments with her. However there are times when my attendance is just not possible. I do harbor some guilt for not going with her. Thankfully we have a very good friend is willing to attend in my abscents.
One of the bits of information I found on the internet was "shut up and listen". This is where I am afraid I will overstep my boundaries. When to bite my tongue and when not. I only offer input when I feel she has left something out or when I feel that a question has not been explained to its fullest.
When it comes to doing for her, she says "I'm not helpless" and that I don't have to do all the work around the house. Our opinions differ on that subject. I feel there is much more that I can do. I tend to want to take as much of the stress out of her life as I can. I recently ask her if she should take off work and then it dawned on me that that is her descision to make not mine. Lesson learned.
I appreciate having a place to come and express my feelings, gain knowledge and support.
Thanks for listening...Bob
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09-08-2008, 09:24 PM
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#9
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Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
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Hey, Bob, it's good to have you here, and thanks for giving us a little more info. I can already tell that you are a good man and I'm sure that others will agree. You have done your homework and the mere fact that you are here on this site speaks volumes. It's great that you try to be with her for all appointments, but, let's face it, in this day and age, that's almost impossible. I'm sure it means so much to her that when you can be there, you are, and when you can't, you have a good friend that can. You shouldn't feel guilty. And when neither of you can be there with her, make sure that you call as soon as you can and check how it went. If you haven't done so already, start a journal/notebook where you can jot down questions and thoughts. Always have it with you. The advice that you got from the internet "shut up and listen", that is valid for when your wife/girlfriend/partner is speaking, but when the doc is speaking, and you have a question, pipe up immediately. In my opinion, as those concerns and questions arise with the doc., they need to be addressed right then and there, as opposed to trying to back-track. Bob, I know that you want to do as much as you can for her, but like you said, lesson learned. Here on this site, we like to know where people live, so that we may be able to offer more help and support. Where do you guys live? (I promise I won't try to sneak into your garage and borrow stuff)
__________________
For Nicola
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09-09-2008, 10:24 AM
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#10
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Senior Member
Join Date: Jul 2007
Location: Canada
Posts: 2,193
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Hi Bob
Have you asked your wife how you can be more supportive?
My husband was extemely helpful and supportive during my
chemo treatments and he has continued to be so three years
later. But there were times when I wished he could read my
mind. Don't forget ... men are from mars and women are from
venus.
__________________
PinkGirl
Dx Aug/05 at age 51
2cm. Stage 2A, Grade 3
ER+/PR-
Her2 +++
Sept 7/05 Mastectomy
4 FAC, 4 Taxol, no radiation
1 year of Herceptin
Tamoxifen for approx. 4 months,
Arimidex for 5 years
Prophylactic mastectomy June 22/09
" I yam what I yam." - Popeye
My Photo Album
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09-09-2008, 10:28 AM
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#11
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Member
Join Date: Sep 2008
Posts: 5
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Bill, Here is some history on us. Both my wife and I have lived all of our lives in Southern Illinois. Together we have two children which are both grown and have moved away from this area.
In late 2005 my wife was diagnosed with squamous cell carcinoma in her jaw bone. She underwent extensive surgery (14 hours) to remove the left side of her jawbone. Then reconstructive surgery to replace the jawbone. After the operation she spent 7 days in intensive care. Then came the recuperation from the intense surgery. Although she did not experience the chemo treatments, the radiation treatments she had to take were about as much as one person could stand. As a result of the radiation treatments, she developed blisters in her mouth. She endured a great deal of pain and suffering as a result of the caner.
On June 20th my wife and I took our son to the airport in St. Louis. He was in the military and had to return to Germany. Needless to say it was a very depressing day for both of us. While doing yard work the next day, we stopped for a rest. At that time was when she told me of the lump in her breast. My inital response to her was "you are a very strong will person, you can beat this". I vaguely remember riding across the yard on the mower and could no see where I was going because of the tears in my eyes. We were both devistated to say the least. Her diagnosis was er- pr- her2+ stage 2.
This is why SHE IS MY HERO...Thanks
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09-12-2008, 08:02 AM
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#12
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Senior Member
Join Date: Jan 2008
Location: Oregon City
Posts: 856
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Hey Bob:
I just want to let you know that if your heart is in the right place, then you aren't going to do anything that is so wrong emotionally that it can't be fixed. And it is pretty obvious that your heart is in the right place.
There is a fine line between being super supportive and suffocating. That line changes day by day and hour by hour. If you are doing it right, you will be crossing that line quite a bit in the early stages and less so as you and your wife learn how those boundaries can change. If you communicate with your wife, things will work out eventually. Sometimes communicating means not saying anything.
As for me, I had just as much anxiety as Colleen did with this cancer. When I was feeling insecure, then I tended to talk too much about it. Sometimes Colleen just wanted me to be near her and to try to be as normal as possible. Unfortunately, cancer is like an elephant in the room, a big scary elephant at that. Something I learned to do was that when I had too much anxiety, I would start planning normal things like a vacation or what the next big home improvement project was going to be. It got everyone looking past the cancer.
Hey Bob, I am glad you found this site. I think you are doing a good job with all of this. You and your family will be in or thoughts 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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09-12-2008, 06:00 PM
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#13
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Member
Join Date: Sep 2008
Posts: 5
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Pink Girl, Thank you very much for the feed back and support. My wife and I have been married for almost 32 years. Prior to the cancer, I never had to ask if there was something I could do for her, It just came naturally. The situation now is far from the norm. I guess that fortunatly for me, my wife is not a hard person to please. I do ask her if there is anything I can and should do for her. I tell her that I love her, buy her flowers and on occasion if given the chance will tickle her feet. I do know that I the situation were to be reversed, she would do what every she could to help me. Thanks for your encouraging words.
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09-12-2008, 06:15 PM
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#14
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Member
Join Date: Sep 2008
Posts: 5
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Lee, Thanks for your encouragment. There are times I get anxious. Mostly due to the time span between the diagnosis and the beginning of the treatments. The fear of matastisizing is overwhelming. I can only immagine what is going on in her mind. Then there was the time we drove to St. Louis (2 hours) for a doctors appointment to be told that we did not have an appointment. She had received a notice of the appointment in the mail but that did not seem to matter. I could very well have let my anger get the best of me but my thought was what effect my causing a scene would have on my wife. After a few minutes of discussion we were able to speak with the nurse and was told we could wait two hours to see the doctor. Its ws hard to put the thought of the situation behind us but in order for us to look focus on the future we have to forget and forgive. Looking back on the first time my wife had surgery for cancer, the 16 hours I spent in the waiting room taught me a great deal about patients. I guess the moral of the story is that being a caregiver goes much farther than material needs. Lee thanks for the feedback and encouragment.
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