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Old 12-22-2014, 07:20 AM   #1
catalina
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Tired and angry

I am suprised but I am becoming tired and angry. My wife had cerebellar surgery and she is on high doses of decradon. So she does not sleep much. So, neither do the caregivers. it is wearing on us all, and I found myself getting angry at this diseaes, at this constrained life, at this lack of a break, lack of sleep and need to keep on with a normal life around all of this mess.

I am getting angry and I do not like this in myself.
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Old 12-22-2014, 04:34 PM   #2
Dakini52
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Re: Tired and angry

I think it's pretty normal to become angry. Caregivers bear a huge load and hopefully you will be able to manage some type of break. I'm certain you deserve it. God bless.
__________________
Diagnosed June, 2006 HER2+++, ER- PR-, Grade 3, Stage IIB. Modified radical mastectomy, radiation, chemo, Herceptin, Tykerb 1 year. [*]In remission until 2/2010. Small tumor detected on chest wall during routine scan. 2/2010 surgery to remove tumor, started Herceptin/Tykerb, follow up radiation. [*]12/26/2010 - Off Tykerb due to allergic reaction[*]12/16/2014 - Have continued on Herception for almost 5 years now and remain NED. Discussion with onc re adding Perjeta to the Herceptin as another way of preventing recurrence. Still in discussion phase. 12/26/14 Onc applying for approval for Perjeta.
Perjeta approved and I received one infusion. It had an immediate impact to my lungs and I experienced difficulty breathing so.....I'm going to be sticking with just Herceptin. Still looking for a good vaccine program to enroll in.

Debbie K
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Old 12-23-2014, 05:08 PM   #3
rhondalea
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Re: Tired and angry

I think you have right and reason to be angry with cancer. Cancer sucks, and you've both been hit hard. Just don't compound the problem by getting angry with yourself because you're angry at cancer.

I think you should talk to someone at your cancer center/oncologist's office about respite care, because you need regular breaks from the load you carry. Also query your insurance company about visiting nurse services. You can't be a good caregiver to your wife if it's all on you all the time. The well-being of caregivers is often ignored, but your health and optimistic outlook are essential to your wife's recovery. I know there are resources, because I read about them when I was in treatment. You just need to ask about what's available in your area.

And at the very least, you can always come here to vent about it. As a practical matter, that won't get the work done, but it might make you feel a tiny bit better.
__________________

2/6/09 Core needle biopsy: negative; Mammos through 2010: no change
3/30/11 Pea-sized lump in left breast at site of prior biopsy; mammo negative, sonogram not so much
4/14/11 Core needle biopsy: negative for cancer
5/18/11 Excisional biopsy 1.2 cm tumor, LVI, positive margin; ER+60%,PR+20%,HER2/CEP17 5
6/15/11 BMX: Left DCIS & LH; Right ADH; SNB: 2/3 nodes: 1.4 cm and 1 mm; ALND L1&2: 0/10; Stage IIa, Grade 3
7/14/11 CT/Bone scans NED; MUGA 66%
7/19/11 Biweekly dd AC w/Neulasta; done 8/30/11
9/13/11 Transfusion (Hemoglobin 8.6); MUGA 64%
9/20/11 Start Taxol + Herceptin; Taxol done 12/6/2011; continue Herceptin until 9/4/2012
12/27/11 Radiation - 6 weeks; 2/27/2012 - DONE! Yayyyy!
2/29/12 Start Tamoxifen 20 mg/day; continue until 2/28/17
5/16/12 Start five-years Metformin trial
6/19/12 MUGA 61%
8/21/12 Brain MRI NED (head still hurts, brain still fogged)
9/4/12 Herceptin done!
9/6/12 Port out!
7/11/13 Aricept 5mg for cognitive impairment; increased to 10mg as of 8/23/13; back to 5mg 12/2013
5/2014 Add Namenda 7mg
9/2014 Stop Aricept and Namenda; Neuropsychological evaluation
10/24/14 Start cognitive rehabilitation therapy
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Old 12-24-2014, 11:12 AM   #4
Lucy
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Re: Tired and angry

I agree with what the others have said - what you're feeling is normal.

I was diagnosed with cancer in January of this year but I've also been a caregiver to a cancer patient and I have to say, caregiver is the harder, more stressful job - at least for me.

For me, being a patient has been more of a passive role so to speak in that I'm told where to be and what I need and I do it, the only action on my part is to follow directions. Whereas the caregiver role is more of an active role (what do you need, what can I do, let me do this, etc.). You're constantly trying to anticipate and act on the needs of the patient. It's very draining and taxing on the person. Almost everything you do is directed at seeing to someone else's needs and yours go unmet, if that makes sense. Rhondalea is right, you need respite. If you get help and take a bit of a break, you'll likely feel guilty for even wanting the break but it's still very important. If you're feeling drained and exhausted all the time you're not being the best support you can be for your wife and you need to be, for both of your sakes.

I wish you all the best and hope you can get what you need.
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Old 12-29-2014, 06:52 AM   #5
catalina
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Re: Tired and angry

We found out Christmas Eve that my wife's cancer has now gone to her meninges. This is a dire situation and we are now talking about risk versus reward of further treatment. I am at a loss. Our kids are 23 and 19 and we talked last night to explain that we are the trreatment team, and we will have to make very hard decisions soon.
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Old 12-29-2014, 07:08 AM   #6
rhondalea
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Re: Tired and angry

I'm so sorry. You just haven't gotten a break.

Please talk to Rolepaul before you make any decisions. He knows this subject better than anyone.
__________________

2/6/09 Core needle biopsy: negative; Mammos through 2010: no change
3/30/11 Pea-sized lump in left breast at site of prior biopsy; mammo negative, sonogram not so much
4/14/11 Core needle biopsy: negative for cancer
5/18/11 Excisional biopsy 1.2 cm tumor, LVI, positive margin; ER+60%,PR+20%,HER2/CEP17 5
6/15/11 BMX: Left DCIS & LH; Right ADH; SNB: 2/3 nodes: 1.4 cm and 1 mm; ALND L1&2: 0/10; Stage IIa, Grade 3
7/14/11 CT/Bone scans NED; MUGA 66%
7/19/11 Biweekly dd AC w/Neulasta; done 8/30/11
9/13/11 Transfusion (Hemoglobin 8.6); MUGA 64%
9/20/11 Start Taxol + Herceptin; Taxol done 12/6/2011; continue Herceptin until 9/4/2012
12/27/11 Radiation - 6 weeks; 2/27/2012 - DONE! Yayyyy!
2/29/12 Start Tamoxifen 20 mg/day; continue until 2/28/17
5/16/12 Start five-years Metformin trial
6/19/12 MUGA 61%
8/21/12 Brain MRI NED (head still hurts, brain still fogged)
9/4/12 Herceptin done!
9/6/12 Port out!
7/11/13 Aricept 5mg for cognitive impairment; increased to 10mg as of 8/23/13; back to 5mg 12/2013
5/2014 Add Namenda 7mg
9/2014 Stop Aricept and Namenda; Neuropsychological evaluation
10/24/14 Start cognitive rehabilitation therapy
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Old 01-02-2015, 10:11 AM   #7
Mtngrl
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Re: Tired and angry

Catalina,

I'm so sorry you're facing this situation. I know I had 'roid rage when I was on Decadron. I also didn't sleep much. I imagine if I had a partner it would have been very trying for him.

On caregiver woes, please remember that it's impossible to give with empty hands. You have to recharge yourself if you want to be of any use to someone else. Establish boundaries. Get sleep and exercise. Eat well. Pray or meditate regularly.

Rhonda's right--talk to Rolepaul. You can PM him. He's our forum expert on CNS metastases.
__________________
Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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Old 01-03-2015, 06:54 AM   #8
graham
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Re: Tired and angry

My biggest problem is that I think i should be stronger i think why am i stressing when it is my wife that has cancer. I say to myself i should be stronger i should show no weakness because if i do Lenny will think there is no hope . So i cry when nobody is around .I research when all my family are asleep , and the bottom line is i can not do anything to help ,i have no magic potion i have to be strong when in fact i am weak, Nothing can change the fact that my wife has cancer and i can not do a damn thing about it .My work look at me and say we will help you when in fact they will help till I can no longer do my job then they will say sorry but we need a manager that is here not one that is here some days but isn't the rest We are sorry you wife has cancer but we need to move on as a business..
So the bottom line is My wife's cancer is going to loose my job, destroy me sanity , also destroy my children's sanity , Suck the life out of her, and i have to sit and watch all the pain and torment this insidious disease reaps on her . Do I like it Hell no. Would i change any of it Hell yes. bottom line is i can't change it so all I can say is I at this moment in time would never change the fact that i love my wife and will be with her to the end no matter what that brings .. I FUCKING HATE CANCER BUT I LOVE MY WIFE MORE
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Old 01-03-2015, 09:20 AM   #9
Lucy
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Re: Tired and angry

Everything you just said is why I said cancer is harder on the caregiver than the one who has the cancer. Have you taken advantage of the Family Medical Leave Act? It allows you to take up to 3 months off work (without pay) to care for a family member and your employer has to hold a job for you (may be a different job but it has to be comparable to the one you had). My understanding is that the three months doesn't have to be taken all at one time to where maybe you could take some time off to get some relief and then go back to work and then take some more time off down the line when you're reaching your breaking point. The downside is the without pay part but if that's something you could swing, it might be worth looking into.
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Old 01-03-2015, 04:27 PM   #10
Mtngrl
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Re: Tired and angry

Dear Graham,

I appreciate your honesty, and I can just feel the intensity of your emotions, and your pain. I'm so sorry you're going through this. What I hear most clearly is your anguish over being unable to fix this situation.

I think you should find someone to talk to in person--a chaplain, spiritual adviser, or counselor. At the hospital where I am treated there are social workers and psychiatrists who are specially trained to help people in situations like yours. I'm assuming there are people like that where you live. You sound like a drowning man. That's the best life preserver I can toss to you. Get help.

It's so hard, and so sad, what you're going through. I'm really sorry.

Amy
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Old 01-04-2015, 02:36 AM   #11
graham
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Re: Tired and angry

I would go and talk to someone but i can not talk to a pastor or someone like that as i have lost all faith that there is a god or a higher being . As for talking to a psychologist or councillor the first question i have asked the two i talked to was have you ever had to deal with a love one with cancer both said no , I just shook my head and walked out how can you possibly talk to someone that has never walked a mile in your shoes and believe they will understand. So I will continue to research Be strong when my wife needs me to be and go on hating cancer with a passion .
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Old 01-04-2015, 03:25 AM   #12
Lucy
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Re: Tired and angry

Graham - I totally get what you're saying. It's hard to take advice from someone who has no first hand knowledge of what you're going through. I found a couple of links that I hope will be helpful to you.

This first link is to a form you fill out as a caregiver and they match you up with someone who is dealing with the same thing - same cancer, same treatment, etc.

http://www.cancare.org/look-for-support.asp

This second link takes you to a page with links with information for caregivers.

http://www.cancer.org/treatment/caregivers/index

Good luck.
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Old 01-04-2015, 03:43 AM   #13
graham
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Re: Tired and angry

Thanks lucy I will look in to them . Like what you said you can't talk to someone that has no understanding with what you are going through its like asking someone that lives in the desert about surfing they can give an opinion but that is all.
The other drama is how do you tell your kids that they mother might not be here in a few yrs ,I was told cross that bridge when you come to it well here we are here Kids your mum has one of the worst breast cancers going I just don't know what the outcome will be . I am lucky my youngest is 22 but they are still our babies and Its there mum
My biggest problem i have is I am supposed to be the head of the family ,the fixer some would say,If we have a problem i fix it or come up with a solution to fix it, With cancer there is no solution no fixing it I am helpless so i believe i have failed as a head of the family . I know that this is something i have no control over and can't fix but it dosnt stop me feeling worthless and when my wife looks at me with that help me babe look it just rips my heart out i can not do anything . Like i said she will never see me being weak i will always be strong around her and the kids I will never faultier in that job,but like i say and have said I FUCKING HATE CANCER sorry about the swearing
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Old 01-04-2015, 04:08 AM   #14
graham
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Re: Tired and angry

Oh and sorry catalina for highjacking you post
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Old 01-04-2015, 06:54 AM   #15
Mtngrl
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Re: Tired and angry

Dear Graham,

Have you considered the possibility that, instead of expecting you to be strong and fix everything, your family wants and needs you to be authentic? That they need to know what you're going through so they can understand it, and maybe help you? That one way to express your love is to share your weakness as well as your strength? And how do you know what your wife and kids are feeling unless you ask? Is it possible they're hiding too, to try to help you cope?

Also, have you considered the possibility that anger can't really be compartmentalized, that the anger you believe is directed solely at cancer is leaking out into other aspects of your life? How do people see you and relate to you?

You're being really hard on yourself. It's understandable. As you say, you feel you've failed, and you feel helpless. And you are powerless to conquer your wife's cancer. That's a given. Sorry about that. . . .

The question becomes, now what? What is it possible for you to do? It's possible to quiet the storm of thoughts in your head, if only for a moment. It's also possible to work off some of the wearing, corrosive effects of the stress and trauma you're going through by exercising (even just walking.) Worry and fear (and anger) are mind killers. Learning how not to let your circumstances destroy you is something within your power.

I was greatly helped by reading Jon Kabat-Zinn's book, Wherever You Go, There You Are. It's about mindfulness meditation. It's not religious at all, just practical advice. A friend lent me her copy when I was in a very rough patch emotionally (long before I got cancer). I would wake up at 3 am with my heart racing, panicked. I was taking sleeping pills, because my doctor said I had to sleep (he was right, of course.) I couldn't eat. The techniques I learned from the book helped me get a grip. They didn't do a thing to change the circumstance I was in; I didn't get what I wanted, but I found a way to survive.

Above all, know you can keep coming back. Vent all you want. Swear all you want. You are loved and welcomed.

Peace,
__________________
Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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Old 02-27-2015, 12:30 AM   #16
Her2husband
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Re: Tired and angry

Hi Catalina and Graham,

As a husband who is going through a similar journey I have no advice but can share some of my thoughts. We are not super human and as much as we like to show a brave face and want to be seen as strong we are allowed to crumble. We sometimes need to fall apart and that is o'k, we will pull ourselves up again. I can tell you there was a particular timespan during my wifes waiting for the next scan that both she and I held inside our fears and feelings and it all exploded one day. But that was a lesson we needed and now we talk to each other about our fears.

It is not much fun being on this journey not for us and particularly not for our wives. My wife and I hit some very real lows but having said that, we allow each other to have a sense of humour and if you want to look for positives this is something that I truly believe has brought us closer together. I have young children and the future frightens the hell out of me but I can't change the outcome so I just allow myself to feel what I feel and then move on the best I can.
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