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Old 06-03-2009, 07:56 PM   #21
Believe51
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Location: RHODE ISLAND (Ed getting me a latte on 2nd Cancerversary Cruise 2008) 'BELIEVE': To accept as true or real, To have faith in, To presume ALWAYS BELIEVE
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Rendi, although we are not a substitute for our blood family and old friends, we will always be here to talk to. We are the eternal friends made during this journey, after and because of cancer. I know this does not stop the lonliness altogether, but I sure hope it brings atleast a little comfort.>>Believe51
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9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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Old 06-03-2009, 08:02 PM   #22
BarbM
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I was just thinking about this the other day.....I've decided that along with this diagnosis comes a new "ME" and a chance to start things fresh...and this can mean new friends, too....and stronger bonds with the ones still around. Our cancer world is not one that any of us would ever have chosen, but it's our world now....in spite of it all, it's not too bad. The people that surround me now are wonderful, kind, encouraging and loving....I thank God everyday for these people!
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Dx 5/1/07 (age 47), Left IDC
ER less than 5% +, PR -, HER+ FISH 5.4
Lumpectomy 5/07, Quadrantectomy 6/07
AC 7/07 -10/07, Liver mets dx 9/07 (liver bx)
Taxotere/Herceptin 10/07 -12/07
Herceptin only 1/08 - 7/08
Mastectomy 3/08, RADS 4/08 - 5/08
Brain MRI 5/08 clear
Gemzar/Herceptin 7/08-9/08
Lymphedema 8/08
RADS/Hyperthermia 10/08-11/08
Abraxane/Herceptin 12/08-3/09
Doxil/Herceptin 3/09 to 5/09
Xeloda/Tykerb 6/09-10/09
Navelbine/Xeloda/Tykerb 10/09-12/09
Tykerb/Herceptin 1/11/10
Tykerb/Herceptin/Ixempra 2/1/10
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Old 06-03-2009, 09:01 PM   #23
Jean
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Yes, sad to say that some people will shock you with their behavior. I do think that these people who behave this way were always selfish or self absorbed, or weak, or whatever? but we did not notice it so much as we went along our merry way. But once we are dx. and begin the fight along our new journey we see people clearly. Maybe because we now seperate the nonsense and remove it from our life. We now know what is vital and really important. I truly feel sad for those that drop out of our lives at a time in our lives when it would have been just great to have the love and support from them...feel sorry for them for they are missing the best of us.

Julierene, I am sorry but your husband has the brain of a horses petunia.

Be assured your children know who their Mom is.
Sending you hugs,
Jean
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Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006

Last edited by Jean; 06-03-2009 at 09:03 PM..
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Old 06-03-2009, 11:07 PM   #24
hutchibk
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I feel really fortunate that I have not experienced this... but, what I have experienced is something a little different. On occasion, family and friends have acted like I should have the same energy and stamina that they do. I have also been asked why I have become "lazy" - which I really think is unfair. An occasional friend or two have tried to lay guilt on me for not "being there as often or as readily" as I used to be - like I am somehow a deficient friend because I have to take time out for treatment or to recharge. To be fair, I don't feel like a "sick" person, and I don't let most friends see me when I am having a down day (I isolate when I need to recharge)... so they may not know the true reality of how my life has changed and how my overall stamina is not what it used to be. I know I present a pretty stoic front, but that's because I make sure I am socializing when I feel my best, so no-one is the wiser.

I am so sad that anyone has been made to feel written off by family or friends. It's shameful.
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Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."

Last edited by hutchibk; 06-03-2009 at 11:10 PM..
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Old 06-04-2009, 12:47 AM   #25
Savta
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This thread has come to me at such an appropriate time! I have been battling a mini-depression (I hope) these last few weeks. I finished my year of Herceptin six weeks ago. And now I find myself battling with the questions "What do I do now?" I haven't gone back to work, because I still have numbness in my fingers and I'm afraid of dropping things. (I am a dental assistant).
I too have friends, who were so close with us, who have seemed to already write me off at the start. You know the type. They come to visit, but they have one eye on their watch and one on the door, for a quick escape. I haven't been angry with them--just sad, because I miss the good friendships we had. One couple in particular that we used to go out with often, and even vacation with--never called to suggest we get together. People just don't get it--that the nature of having cancer issolates us enough--we don't need more issolation!
Now, I find I don't leave the house at all(except for my regular walks) and generally no one comes and no one calls. T he wonderful people who stepped up while I was being treated now no longer come around because I'm "well" now. And my older friends have already written me off.
Thankfully, I have a wonderful husband and children and sibbilings who call often(we live thousands of miles from them).
But it's my everyday that I'm having trouble getting through.
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Old 06-04-2009, 01:50 PM   #26
hutchibk
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Savta - I don't know where you live, but in my town, I found an amazing group of women (all ages) through the breast cancer resource center... we took it up a notch and created a fun and wonderful social group that get together often (twice a month for lunch and at least once every couple of months for an evening with the hubbies/partners/families). And in the past 4 years I have enjoyed new and wonderful friendships with women who know EXACTLY what it is like to live with cancer. We are there for each other and we are friends to each other. It is the true meaning of "support group"...
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Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 06-04-2009, 02:43 PM   #27
Bill
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Rendi- like Marie said, we are not quite the same as blood family, but we will be there as much for you as we can. If you're ever lonely, and need a friend, come join us at the "campfire" one night. Brenda, Nikki and I saw the same thing from friends and some family members. They expected her, because she was so upbeat about everything, to always have a limit-less source of energy and be ready to run to the mall, park, etc. at the drop of a hat.
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Old 06-05-2009, 02:40 AM   #28
Ellie F
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I think what you said Bill is right. If you try to be upbeat people seem to think it's a walk in the park! Only the people close that see you every day and know how hard a journey this cancer thing is really understand.
I felt so cross when I read that people had dared to suggest Brenda may be 'lazy' when she had battled so courageously this illness.I wanted to fly across the pond and shake them.
The thing that I find hard is when people look at me with pity.It is as if they don't think I am the same person as before.I guess it has to do with fear and the difficulty we all have in confronting our own mortality.
Ellie
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Old 06-05-2009, 09:24 AM   #29
hutchibk
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Ellie - I agree about the pity. I don't like that either. I guess that is why I strive so hard to only socialize when I feel really good, so that no one is the wiser and I don't have to experience that. I have rid myself of those friends who I realized just weren't worth the energy... they just suck air out of the room and who needs that?
__________________
Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 06-07-2009, 11:24 AM   #30
RobinP
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Thanks for posting Julierene, as I think many of us have experienced some sort shocking awaking when friends and family desert us just because of a cancer diagnosis. I was applaud to find that some of my close relatives and christian friends let me down after my diagnosis by ignoring me and not returning the friendship we once had. It hurt and took a long time to get over. However, now I consider it all for my gain, as I think that my life is so much easier without toxic, unsupportive people in it. Now I have more room in my life for the people who really do care and support me.

Don't worry about the other woman either that your exhusband has now. Nobody will ever take your place and know that you are unique and special. Take care, Julierene ,and keep your pretty face and spirit up and smiling.
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Old 06-07-2009, 04:49 PM   #31
Jackie07
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Julierene,

There's a Chinese saying: "Even the most loyal son will not be present when one is ill for a long time." Most relations in our life are not trained medical professionals or counselors, it gets tough when our medical condition overwhelms them. And the natural repsonse based on 'animal instinct' is to 'flight' after 'fighting' for a while and couldn't see an end to it.

It hurts when a relationship breaks up - being a cancer patient or not. 'Living well' is always the best revenge.

Forgot to answer the question: Yes, I have been written off by many, many bosses and co-workers. I just switch my profession and start over (again and again...
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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
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3 Infertility tmts 99 > 3 u. fibroids > Pills
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Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
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"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

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