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Topic: Our Story

Forum: Stage IV/Metastatic Breast Cancer ONLY —

A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only. There is a separate forum For Family and Caregivers of People with a STAGE IV Diagnosis.

Posted on: Apr 27, 2016 01:04PM - edited Jun 27, 2016 10:28AM by A_Guy

A_Guy wrote:

About 4 years ago my girlfriend was diagnosed with stage 1 breast cancer. They did a mastectomy and then put her on chemo. They had to later perform another procedure to clean up the borders. They then gave her a drug that was designed to reduce the chance of recurrence by 5%. I didn't do too much research, and thought it was a done deal.

She is thin, never smoked, and never drank much.

Almost two years ago she found a mass on her lower left neck. Yup, it was back. They then found a small one in her chest and two small abdominal ones. Her2 negative, Pr negative, ER positive. They put her on Afinator and then another chemo. Her already compromised kidneys then failed, and she was in the hospital for weeks. They thought she'd need dialysis for life, but they came back - function is now moderate. It was a nightmarish time, but seemed like a medical miracle.

I got her to begin taking turmeric/curcumin and began doing a lot of research. Trying to separate the nonsense from the possible good suggestions is difficult. I took her to a naturopath, acupuncturists, etc. A series of chemos followed later - she was recently on Navelbine, Ibrance, and is now on Eribulin. She's really tired most of the day, and is on the couch. Interestingly the last scan showed the abdominal and chest tumors to be smaller, with the one on her neck about the same size. They did a PET scan yesterday and we're waiting for the results. We only seem to get two kinds of news: Bad news, and worse news. I am hoping for better news.

Her mother is here from Peru, she has more relatives coming, and she has friends and people from her old job stopping by every day. Everyone really, really likes her. It's good to have support.

As I write this, she and her son are going to meet with the palliative care group for end-of-life decisions. I can only image how rough that's going to be. It's very painful even thinking about it. I understand what they are doing, but to me, that's really negative.

She has just finished three months of Avemar (AveUltra), and we're going to stay with it. Until recently she has had stomach problems and wasn't eating well. Of course that didn't help. I was supposed to take her to to a natural clinic in Boulder, CO today, which specializes on this kind of thing, but the other meeting was happening at the same time. Very frustrating. Now we have to wait two more weeks for that.

This is pretty much all I think about anymore. I feel sorry for myself and how much all of this sucks, but then I realize that this is not about me.

I continue to look at all options, strongly believe that the integrative approach is the best way to go. We're getting desperate enough to even try "The Secret."

I stay in touch with her oncologist via e-mail to see what trials she might be eligible for. I'm always pushing. Her reduced kidney function doesn't make it easy.

Anyway, I'm sure you have heard this kind of story before...








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Apr 27, 2016 02:53PM Cafelovr wrote:

I'm so very sorry! This disease always gives you some ups and downs. Unfortunately, cancer doesn't care who you are, what you do, and how you do it. It doesn't care if your young or old, blue or purple, or rich or poor. It's a beast!

We are all standing behind you! Welcome...

Linda J Dx 10/19/2009, IDC, Left, 6cm+, Stage IV, metastasized to liver, Grade 3, 2/2 nodes, mets, ER+/PR-, HER2+ Chemotherapy 11/23/2009 AC + T (Taxol) Targeted Therapy 1/22/2010 Herceptin (trastuzumab) Surgery 4/4/2010 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Prophylactic mastectomy: Right Radiation Therapy 5/4/2010 Breast, Lymph nodes Hormonal Therapy 7/10/2010 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 12/28/2011 Reconstruction (left): Latissimus dorsi flap, Tissue expander placement; Reconstruction (right): Latissimus dorsi flap, Tissue expander placement Surgery 5/28/2013 Prophylactic ovary removal
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Apr 27, 2016 03:20PM Kandy wrote:

Sorry for all the bad news that you have heard. We will all be hoping that something will start working and turn this situation around for her. Wishing you nothing but the bes

Dx 1/20/2009, IDC, 1cm, Stage IIIA, Grade 3, 4/9 nodes, ER+/PR+, HER2- Surgery 2/25/2009 Lumpectomy: Left; Lymph node removal: Left, Underarm/Axillary Chemotherapy 3/8/2009 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Gemzar (gemcitabine), Navelbine (vinorelbine) Radiation Therapy 10/6/2009 Breast, Lymph nodes Hormonal Therapy 1/3/2010 Arimidex (anastrozole) Dx 10/31/2013, IDC, Stage IV, Grade 3, ER+/PR+, HER2- Radiation Therapy 11/17/2013 3DCRT: Bone Hormonal Therapy 12/2/2013 Faslodex (fulvestrant) Targeted Therapy 10/7/2016 Afinitor (everolimus) Hormonal Therapy 10/31/2016 Aromasin (exemestane) Chemotherapy 2/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Chemotherapy 5/8/2017 Carboplatin (Paraplatin) Chemotherapy 8/14/2017 Halaven (eribulin) Targeted Therapy
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Apr 27, 2016 03:27PM Xavo wrote:

A_Guy, I am so very sorry for what has happened to your girlfriend and the situation you found yourself in. I am not very knowledgeable about the treatments your girlfriend has received and is receiving due to that my mets are in different locations. There is a thread you could go to acquire a copy of a very thorough treatment guidebook for patients compiled by Bestbird, a very knowledgeable woman in MBC and a fellow member of the crew on this boat. The thread topic is "Just sent 1000th copy of my MBC guide". Its link is https://community.breastcancer.org/forum/8/topics/831507 . Please try not to feel too bad before you and your girlfriend learn the results of the tests. You might well receive a better news this time since the tumors are getting smaller. Once the disease gets stabilized, it could be years of good life for your girlfriend and you to enjoy. Let's hope for the best!

   

Dx 12/2002, IDC, Left, 4cm, Stage IIB, Grade 3, 5/12 nodes, ER-/PR-, HER2- Surgery 1/2/2003 Mastectomy: Left Dx 2/27/2015, Stage IV, ER+/PR+, HER2- Hormonal Therapy 2/28/2015 Femara (letrozole) Chemotherapy AC Radiation Therapy Chest wall
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Apr 28, 2016 01:37AM Zillsnot4me wrote:

I know when I finally felt stronger after treatments and had time to wrap my mind around everything, I got my affairs in order. Don't think because she's meeting with a palliative care dr that she's giving up. She's exploring options the same as you have but in a different direction.

I hope you get good news soon.

Liver 1/ 2016, Xgeva 9/2015, Bones 4/2015, Lungs 4/2013 Dx 4/2013, 4cm, mets, ER+/PR+, HER2- Surgery 4/29/2013 Lymph node removal: Right; Mastectomy: Right; Prophylactic mastectomy: Left Chemotherapy 5/22/2013 AC Hormonal Therapy 10/2/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 11/5/2013 Breast, Lymph nodes Surgery 9/25/2015 Prophylactic ovary removal Hormonal Therapy 1/6/2016 Femara (letrozole) Targeted Therapy 1/7/2016 Ibrance (palbociclib) Hormonal Therapy 2/3/2016 Arimidex (anastrozole) Hormonal Therapy 4/23/2017 Faslodex (fulvestrant) Chemotherapy 11/15/2017 Xeloda (capecitabine)
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Apr 28, 2016 07:51AM Longtermsurvivor wrote:

Hi A Guy,

Be sure to take care of yourself, while you're taking care of your girlfriend!

And to find the outside care you need and deserve too.

The palliative care approach includes family and caregivers, so ask them.

And you may want to post to this bco forum:

For Family and Caregivers of Members with STAGE IV Diagnosis

https://community.breastcancer.org/forum/144

Best healing wishes, Stephanie

Grateful to be here. Advanced breast cancer for 25 years, engage holistic approaches. Am dealing with ascites and many mets. Am on hospice.
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Apr 28, 2016 08:26AM A_Guy wrote:

Thanks for your comments - I appreciate them. I downloaded that document a while ago and forgot about it. I'll revisit it.

Thanks again!

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Apr 28, 2016 02:32PM Bestbird wrote:

I remember your post from several months ago, and your love for your girlfriend is evident in every word you write. The results from her recent scans sound encouraging, and hopefully her upcoming test will bring similar news!

This disease affects loved ones as well as patients, and your sadness, anger, and concern are not uncommon under the circumstances. I hope that things improve with your girlfriend, and send you both very best wishes.

Also, I am glad that you already have a copy of my Guidebook, and if you are searching for clinical trials, please visit http://www.breastcancer.org/treatment/clinical_trials/metastatic-trials-tool

and follow the directions below to avoid some glitches with the tool.

After launching the tool, please enter information only in the following sections. Entering any additional information may skew the results

Information to be entered (enter nothing else but this):

  • Year of Birth
  • Female or Male
  • Pre-menopausal or Post-menopausal (presented if "Female" was selected above)
  • Breast cancer type


Dx 10/6/2011, IDC, Left, Stage IV, ER+/PR+, HER2-
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Apr 29, 2016 09:55PM stagefree wrote:

hi!

So well put! Yet it is what it is.. I have struggling kidneys myself and drinking cornhair tea relieves the pain a bit, help me pee a bit.. Yet another weirdo advice, right? :))) so many oills, so much chemo.. No appetite left... I survive on carbs.. Lucky I am Turkish cuisine offers great alternatives. My house-friend (hate to call her maid as she shares and supports me in all ways) looks me in the eye and knows what I need.. My hubby is my rock. Just like you.. I am at peace knowing he and our son will make it together .. They are strong and ready for afterwards.

Please do keep share and let it out here.. Cos noone else gets it. Talking to friends, family and docs only helps a tiny bit and the frustration, feeling of helplessness and sadness builds up inside yet even more.

There's also a support group for relatives here, maybe you have seen.

Hope the best for you both :))

Ebru

Dx 4/9/2012, IDC, Stage IV, Grade 1, mets, ER+/PR-, HER2- Chemotherapy 4/11/2012 Xeloda (capecitabine) Hormonal Therapy 8/24/2012 Hormonal Therapy 6/8/2016 Arimidex (anastrozole), Zoladex (goserelin) Chemotherapy 6/8/2016 Cytoxan (cyclophosphamide), Xeloda (capecitabine)
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May 3, 2016 11:33AM A_Guy wrote:

Thanks, marieB, and everyone.

We'll, she's meeting with the doctor right now. I'm not there. I would have been, but she said that she would only be meeting the doctor's assistant today. That was wrong.

She called a few minutes ago, and said only that she had the PET scan results from last week. The eribulin isn't working, and the tumors are a lot larger. It's like a punch to the stomach.

We're waiting for more info in a little while. I wish I were there, The problem is that we're running out of chemo options. Her doctor said that he was looking into possible trials.

Doesn't seem the Avemar is working. We'll look at medical marijuana, also. One of her South American friends had very good results with it.

Can't hurt...







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May 3, 2016 12:01PM steelrose wrote:

A Guy,

I just wanted you to know that I'm following your story, and I'm very touched by your love for your girlfriend. I've been with a guy for over 20 years now (not married) and he's been my rock, my lifeline. But I've been battling this for six and a half years, and he's having a very rough time right now. Please, please remember to take good care of yourself!!

Wishing you both the best…

Rose.

Dx 1/22/2010, IDC, Stage IV, mets, ER+/PR+, HER2-
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May 4, 2016 05:24AM Heidihill wrote:

Sorry for yet more bad news! I hope they find a good trial for her. MJ also seems worth trying especially if she knows someone who has had success with it. Never underestimate the placebo effect, on top of any effect, that is. Take care!

Dx 8/2007, IDC, Left, 2cm, Stage IV, metastasized to bone, Grade 2, 2/19 nodes, mets, ER+/PR+, HER2- (FISH) Hormonal Therapy 3/25/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 4, 2016 08:00AM Longtermsurvivor wrote:

Good morning A Guy,

Holding you in loving, healing light during this difficult time.

May you find comfort in one another's company.

And healing allies of medicine, people and support.

well wishing, Stephanie

Grateful to be here. Advanced breast cancer for 25 years, engage holistic approaches. Am dealing with ascites and many mets. Am on hospice.
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May 4, 2016 02:00PM A_Guy wrote:

Thanks for your your responses. Rose, I hope that you experience a medical miracle or something like it. It is terrific that you have such a great boyfriend. Do you have any feelings about Avemar, MJ, etc?

Well, the latest is that she is now on Abraxane. Her doctor says there's a 50% chance that it will work. We know better than to be optimistic. She took a second dose of MMJ today, and, probably because of the new chemo, she can't sleep but is exhausted. This morning she said she wants to die.

One of her friends said that the end is near. I don't buy it, and I don't want to think that way. Maybe it's denial, but I am hoping that the new chemo works, and that the MJ does its thing. I'm thinking that she could be so tired for many reasons. Her aunt and mother from peru are with her all day.

The integrative clinic is scheduled for next Wednesday. I hope she is well enough to go. The delay has been hard. She has already expressed that she might not be able to go up to Boulder for that.

Last night we had to take her to the hospital because of breathing problems - fluid around the lungs. They found some around her heart, too. Next week we deal with that. It doesn't end.

I get irritated a little because of the huge demands on my time and the sacrifices. I'm no saint. I have put her though hell, I have taken her for granted, etc.

Anyway, thanks for listening!



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May 10, 2016 07:59PM A_Guy wrote:

Wow, I really feel for all of you. I never knew this side of the disease. It was always something that I just heard about. I am certainly not the only one here who sees someone good who is suffering from this awful disease.

Today she had her second Abraxane chemo. She looks and acts like a shadow of her former self. She's small anyway, but always had a lot of energy, a great sense of humor, and a lovable personality. I have never, ever known anyone who is so well-liked. Everyone who worked with her or just knew her loved her. That's not an exaggeration. She was always puts others first. She is from Peru, and I have seen that Peruvians are like that.

Her stomach is bloated and she can barely eat or drink. I called the doctor's assistant and we talked for 30 minutes. They think there's a 50/50 chance that the chemo will work, but they are worried about her not eating or drinking. They said she was dying. I felt like I was punched in the stomach. The palliative care nurse called me and said the same thing. I am hoping for a miracle. It has to happen soon. Very little eating or drinking is a bad sign.

All this past week I was researching the hell out of medical marijuana oil. Just the other day we started with 1:1 of CBD:THC after reading story after story about how good it is. I wish I knew about this a long time ago. I thought you just smoked it and called it MMJ. I had been researching other possibilities.

I feel like it's too late, especially now that she can't eat or drink. I am trying to get her to, but I don't want to make her mad or feel pressured. I feel really stuck. It's a terrible, helpless feeling.

Thanks for reading this. If you're going through this, I hope you'll at least do a little research on medical marijuana if you haven't already. For us, that ship may have sailed.






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May 10, 2016 10:44PM Bestbird wrote:

Your love for your girlfriend is incredibly deep, and your worry is palpable and understandable.

If her stomach is bloated and she is unable to eat, it sounds as though she has ascites, which is fluid in the abdominal cavity. Pressure against the stomach and vital organs can preclude her from eating and retaining food. I'd suggest a CT of her abdomen as well as checking to ascertain whether there may be a blockage around her liver and bowels.

If she has ascites, they should resolve if her systemic therapy works, which is the hoped for result.

At this juncture your girlfriend should be on Palliative Care, which is different from hospice care. The patient can continue to receive standard treatment for their condition while on palliative care. Patients can request it at any age and any stage of an illness (even upon diagnosis), and it can be used along with curative treatment. Palliative care can reduce symptoms such as pain, shortness of breath, fatigue, constipation, nausea, loss of appetite and difficulty sleeping.It addresses the whole person and helps them to carry on with daily life. To obtain palliative care in order to manage cancer or treatment side effects, your girlfriend may speak with her doctor or nurse. Alternatively, she can look up Palliative Care providers in her area at: http://getpalliativecare.org/providers/

My heart goes out to you both.

Dx 10/6/2011, IDC, Left, Stage IV, ER+/PR+, HER2-
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May 10, 2016 11:17PM zarovka wrote:

A Guy -

I am sending you my prayers and all the strength I can muster. I know where the meditation room is in every facility I get treated, and I use it. No where better to collect your thoughts in these really difficult times. All the prayers from everyone on this site will meet you there.

I am deeply pained that you should feel so helpless. It must be terribly hard not to be in the position to make the medical decisions when she is so compromised.

In my experience, complementary oncology is well developed. It is important to get under the care of a competent and experienced practitioner when pursuing these treatments. They are no less complex than traditional medicine, and sometimes more complex. When you get through this crisis, do find someone very experience in integrative therapies.

>Z<

Ibrance/Letrozol Feb '16 -Sep '17. Adoptive Cell Therapy Oct 2017. Jan 2018 SBRT to sternum met and liver mets. Jan 2018 start Faslodex. Dx 12/28/2015, IDC, Left, 4cm, Stage IV, metastasized to bone/liver, Grade 3, ER+/PR-, HER2- Hormonal Therapy 1/16/2016 Femara (letrozole) Targeted Therapy 2/2/2016 Ibrance (palbociclib)
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May 11, 2016 07:24AM Longtermsurvivor wrote:

(((A Guy)))

Heart hugs for your girlfriend and you!

This is a hard and scary place to be in. It sounds like your girlfriend is surrounded by love and good care, including palliative care, but that only mutes the blows that cancer, treatment and threat of death are dealing you.

You've been punched in the stomach by the seriousness of her suffering.

I'm reading a book by a man whose wife died of breast cancer, A Grief Observed by Guy Newland. He says they knew she'd die of it, but the feelings he had when she did were strong. He said it was like being told that someone was going to punch you in the head. And then came the actual blow of being punched in the head.

No amount of preparation could soften the blow.

We all hope that your girlfriend and you have a miracle and lots more time to live and love...and yet it seems likely that you will lose her sometime.

btw, I have the swollen belly and struggle with eating and drinking as well as weight loss. They are signs that the end-of-life is near. My cancer is very slow and somewhat controlled, but if it were fast and uncontrolled, I don't think I'd last much longer.

When I worry about being forced to eat and drink, I watch this slide show to reassure myself that I'm part of a larger process that will eventually take me onto my next adventure - ready or not!

Food the four letter word in End of Life Care

http://www.slideshare.net/LifeAndDeathMatters/food...

A Guy, my heart goes out to you.

Sending healing kindness, love and light, Stephanie

Grateful to be here. Advanced breast cancer for 25 years, engage holistic approaches. Am dealing with ascites and many mets. Am on hospice.
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May 11, 2016 10:37AM A_Guy wrote:

Thanks for your comments. I mean that. They are all very helpful and excellent Thank you, Bestbird. She is receiving palliative care. Ascites was a concern, but they did three or four ultrasounds in that area and the believe that it's the disease itself that is causing the stomach bloating. Horrible. But I will double-check with them and see if a CT scan would help. I contact her doctor a lot and I'm sure he's tired of hearing from me, but I just e-mailed him and he responded. He said that she is not a candidate for any kind of surgery.

Again, I really appreciate what you have written, but I am not that good of a guy. Part of this is selfishness - I don't want to lose her. I have also taken her for granted. Plus, I tend to get annoyed when people make demands on my time. I have been short with her, even recently, when I have to do things for her that get in the way of my routine. I know I'll regret it later, and I do. I had to drive 15 miles each way to a palliative session by myself, and I was mad about the subject matter (I assumed hospice) and the time I had to spend, and she knew I was annoyed. Back when she had stage one disease, I use to balk at going to her chemo sessions. She used to spend many nights alone at her house then, as I was too selfish to make the 11-mile drive.

We used to talk many times a day, as well as e-mail each other. That's pretty much gone. I write to her, but she doesn't write back, and she can't talk much.

Longtermsurvivor, I am really sorry to hear about what you're dealing with. I don't know how you do it. You have the right attitude and you sound like a great person. Is MMJ a possibility, or that just another hoax? How about curcumin, Avemar, etc?

Zarovka, thank you so much. We did consult a naturopath, but he wasn't very helpful. I had her meet with nutritionists, acupuncturists, Chinese medicine, etc. We had an appointment set up for an integrative clinic in Boulder for today, but she is too weak for that.

Too little, too late on my part.









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May 11, 2016 10:39PM zarovka wrote:

I thought about you today. I am so glad that you sent up this update.

Those of us for whom things are going slower are incredibly blessed. I realize how much I appreciate the people I love. I know I can lose them. I have the opportunity to show them. I try so hard now, knowing that I could lose them.

That said, I wasn't sufficiently appreciative of the precious people in my life prior to bang to the head I got when diagnosed. Not terrible, but not enough. I am so fortunate. But we all take things for granted until we are about to lose them from our grasp. It's human. There's more than one country western song out there to support my position ...

I hope you are okay, but I know you are not. I hope your girlfriend is comfortable surrounded by all the people who love her.

>Z<

Ibrance/Letrozol Feb '16 -Sep '17. Adoptive Cell Therapy Oct 2017. Jan 2018 SBRT to sternum met and liver mets. Jan 2018 start Faslodex. Dx 12/28/2015, IDC, Left, 4cm, Stage IV, metastasized to bone/liver, Grade 3, ER+/PR-, HER2- Hormonal Therapy 1/16/2016 Femara (letrozole) Targeted Therapy 2/2/2016 Ibrance (palbociclib)
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May 12, 2016 09:11AM A_Guy wrote:

Thank you, Zarovka. You are very kind, and you understand this stuff.

Bestbird, it's funny, they suggested doing a CT scan after all!

They found too much liquid around her heart last week when she was in the hospital last week to have fluid removed from her left lung. She had a follow-up echocardiogram scheduled for this week, and they did it yesterday. Same problem with the heart area, but a little worse.

I took her to the hospital this morning, and they will drain that area. She's be there for up to 3 days, unfortunately. While she is there, they will do the CT scan. I am very, very much hoping that they find a benign and treatable problem with her abdomen. It keeps getting bigger. I would thing that as she had a PET scan on April 27th, and that they didn't find fluid there on Tuesday, there has to be something else.

BTW, she also has had kidney disease for 7 years or so. Last winter (2015) a new chemo may have caused them to shut down completely. She was in the hospital for a week or so. They said that she'd need permanent dialysis. Stents didn't work. They put in nephrostomy tubes, and her kidneys came back to life! She's at stage 3 now. We kind of see that as a medical miracle. We need another one.

Then, a few years ago, she fell on ice and broke her arm. They only needed the cast on her bicep, but they mistakenly put it over her elbow. It was a huge and unnecessary inconvenience for 6 weeks.

She has been through SO much.

Now that she's in the hospital, she will probably have to stop the MMJ oil. I feel that we lose traction when that happens. I hate that!

Today is a big day. We'll see how it goes.

I really appreciate your thoughts and comments.

In the meantime, if you haven't checked out MMJ oil, it might be worth it. I have heard so many good things about it.

https://www.theroc.us/













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May 12, 2016 08:09PM zarovka wrote:

Thank you for the update. You are in my thoughts.

I always find it odd that traditional medicine sees these medical issues (kidney failure, cancer, etc) as independent. It seems like her whole body is out of balance. Once you are out of this acute/crisis phase, you'll want to study holistic approaches to health. Cannabis is really just another pill, not the whole solution. Or that is my hunch. I suspect her Peruvian relatives have some interesting and relevant perspectives on health ...

I see that there are things to do and a more hope in your email. I am hoping so very much you will look back on this nightmare as a huge blessing that made you get your priorities straight. Those of us who get to keep going are doubly blessed in that way.

I am interested in Cannabis oil but I won't do it for a while The combination of complementary and traditional treatments I am on is working. I will see how this plays out With cancer it is always good to hold promising treatments back if you can. Otherwise you effectively train the cancer to mutate around it.

>KNC<

Ibrance/Letrozol Feb '16 -Sep '17. Adoptive Cell Therapy Oct 2017. Jan 2018 SBRT to sternum met and liver mets. Jan 2018 start Faslodex. Dx 12/28/2015, IDC, Left, 4cm, Stage IV, metastasized to bone/liver, Grade 3, ER+/PR-, HER2- Hormonal Therapy 1/16/2016 Femara (letrozole) Targeted Therapy 2/2/2016 Ibrance (palbociclib)
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May 13, 2016 07:03AM A_Guy wrote:

Thank you for writing, Zarovka. I am glad that your treatments are working! You should be hopeful! Whatever you are doing is helping, and it's good that you're not only doing chemo.

Today brought devastating news. Her lung has more liquid, and they said that her abdomen is filled with tumors. They sent her home. Hospice is next. We have that "punched in the stomach" feeling.


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May 13, 2016 07:37AM Longtermsurvivor wrote:

Hi A Guy,

May Hospice be as good for you as it has for me.

Their medical, spiritual and emotional support has been extra-ordinary for me and for my friends and family who care for me.

They've taught my carers how to better care for me and to care for themselves while doing so. Amazing.

Hospice also provides free bereavement counseling to survivors, so remember them in your times of need.

A Guy, you may no longer have hope of recovery or survival, yet you can work together with the hope of a loving supportive dying and death. You can work together to be good to one another and yourselves. You can grieve together and individually for the transition of your loved one.

And remember to express those five things that matter most at end-of-life - "Please forgive me," "I forgive you," "Thank you," "I love you," and "good-bye."

There is no time like the present to be present with someone you've taken into your heart.

healing light surround you, Stephanie

Grateful to be here. Advanced breast cancer for 25 years, engage holistic approaches. Am dealing with ascites and many mets. Am on hospice.
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May 13, 2016 02:02PM Bestbird wrote:

Stephanie has said it so beautifully. I am so sorry that you and your girlfriend have received this difficult news, but with hospice care she will be as comfortable as possible. I realize that giving up treatment is a difficult thing to do, but undergoing toxic treatment when indications are that it will not work is not a humane or worthwhile endeavor.

I second Stephanie's recommendation about exchanging words of love and forgiveness. No one is perfect, and there are bound to be times when we do not measure up to our own or others' standards. That said, I'd surmise that your girlfriend loves you wholeheartedly, and you need to reassure her of your love as well.

Sending you both gentle thoughts.

Dx 10/6/2011, IDC, Left, Stage IV, ER+/PR+, HER2-
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May 13, 2016 10:13PM stagefree wrote:

A Guy,

I hope she is hearing all of what you have been sharing with us. You take time to write all of this.. You speak out your feelings, thoughts, hopes, struggles with strangers which is sometimes easier than to speak to the person herself..

We only move forward, time moves forward.. No need to look back and question yourself filled with regrets.. What you have lived so far only was crucial for your self-development.. Which is why we are all here anyway. reread your posts and see your soul growing up, looking at life and all creatures not just your wonderful girlfriend from a different perspective.. That, my friend, is not toeboke regret but gratefulness..

In my belief (not religiously) as you are not your body, it's just a suit for your soul.. Let your soul guide you, not your body..

Her foremost need is knowing you are still there for her, not that she should be there for you still.. And you are my friend there for her still..

Cancer has no cure yet.. We, the ones with cancer will die, most probably from complications of the disease. This fact sometimes blurrs minds ascif the rest won't die. So please do not feel sad and angry at the disease. Trust me, patients accept the facts and consequences more easily and she most probably has accepted things and is trying to make peace with her life and already started wondering about what's beyond.

Dx 4/9/2012, IDC, Stage IV, Grade 1, mets, ER+/PR-, HER2- Chemotherapy 4/11/2012 Xeloda (capecitabine) Hormonal Therapy 8/24/2012 Hormonal Therapy 6/8/2016 Arimidex (anastrozole), Zoladex (goserelin) Chemotherapy 6/8/2016 Cytoxan (cyclophosphamide), Xeloda (capecitabine)
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May 13, 2016 10:19PM stagefree wrote:

Just like with birth, death is beyond our control.. So acting gracefully when the time comes is the best we all can do..

Stop looking back, time is limited for judgements and all.. You are still blessed to share her each breath as she is not gone yet.. Please spend as much of your time with her as you possibly can. That will help her more than yet another line of therapy of any kind.

She needs to hear it's OK and will be OK when it's time to go. Do tell her you will be fine and will always love her and will move on with her memory .. She needs to hear all these.. This is the final line of treatment, the one her soul needs..

Love & hugs to both of you

Ebru

Dx 4/9/2012, IDC, Stage IV, Grade 1, mets, ER+/PR-, HER2- Chemotherapy 4/11/2012 Xeloda (capecitabine) Hormonal Therapy 8/24/2012 Hormonal Therapy 6/8/2016 Arimidex (anastrozole), Zoladex (goserelin) Chemotherapy 6/8/2016 Cytoxan (cyclophosphamide), Xeloda (capecitabine)
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May 13, 2016 10:48PM zarovka wrote:

That was not the news I was hoping for. I wish peace and comfort to you and your girlfriend and all her family.

I hope you have located the meditation room at the hospice facility. It's a great place to cry, in my experience.

>Z<


Ibrance/Letrozol Feb '16 -Sep '17. Adoptive Cell Therapy Oct 2017. Jan 2018 SBRT to sternum met and liver mets. Jan 2018 start Faslodex. Dx 12/28/2015, IDC, Left, 4cm, Stage IV, metastasized to bone/liver, Grade 3, ER+/PR-, HER2- Hormonal Therapy 1/16/2016 Femara (letrozole) Targeted Therapy 2/2/2016 Ibrance (palbociclib)
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May 16, 2016 09:21AM A_Guy wrote:

Thank you Zarovka and everyone. Your comments are appreciated very much. I must be in denial or ridiculously motivated. When they said that, my reaction was that traditional medicine has failed, and it's now time for the next method. Hopefully one that works.

I hired a MMJ consultant, and we immediately started on an aggressive Rick Simpson Oil regimen. They say there is a 70% success rate. Who knows? The problem here is that it is so late. I can't tell you how much I wish I had done this even a month ago. I wasted so much time and money with curcumin, Avemar, naturopaths, Chinese medicine, acupuncture, etc. I didn't know about MMJ. I thought it involved smoking weed.

It's expensive ($1200) for the first month. The consultant was recommended by a local clinic. She is a very passionate, caring, and good person. She sincerely hopes it works.

Will it? Time will tell. Other than a slight buzz (which we're working on reducing), she has nothing to lose. If it works, great! If not, I know I have tried everything.

I have never known anyone like her, and I've known a lot of people. Seeing this wonderful person become a shell of her former self is heartbreaking beyond description. Her mother and aunt are here from Peru to take care of her. I feel for them.

I still can't understand why good people like you and her have to deal with this cruel disease.

Thank you all again.





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May 16, 2016 11:14AM steelrose wrote:

A Guy,

My heart breaks for all that you're going through. I saw my father through it, and I agree that you must feel that you've tried everything, however farfetched. No regrets! As long as your girlfriend is willing and in agreement.

Men naturally want to fix things, to find solutions, and I know it's devastating when something can't be fixed. I see "my guy" struggling with these same issues. We all know there isn't a cure for cancer, but extending life is possible… who is to say what will or won't work at this point? It's a crap shoot. I just wish both you and your girlfriend comfort and peace.

Sending you both my love. My thoughts are with you…

Rose.



Dx 1/22/2010, IDC, Stage IV, mets, ER+/PR+, HER2-
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May 16, 2016 11:58AM zarovka wrote:

A Guy -

My prayers are with you.

I am one of many people in this forum who are interested in all aspects of your experience good and bad with the Rick Simpson Protocol. We're where you were a few months ago ... should I really invest in this? It's expensive. I really don't want be high for 3 months. Does it work at all, a lot? What are the side effects?

I know you are going through a lot, but if you are in the mood to distract yourself with wonky technical details of your experience, you have an audience.

I am so very glad that you have a caring passionate experienced cheerleader by your side. It will make a huge difference over and above the Cannabis. There is only so much we can do via the internet. But if you do need us, you will always find our prayers waiting for you in that meditation room ... we know this is so hard.

>Z<

Ibrance/Letrozol Feb '16 -Sep '17. Adoptive Cell Therapy Oct 2017. Jan 2018 SBRT to sternum met and liver mets. Jan 2018 start Faslodex. Dx 12/28/2015, IDC, Left, 4cm, Stage IV, metastasized to bone/liver, Grade 3, ER+/PR-, HER2- Hormonal Therapy 1/16/2016 Femara (letrozole) Targeted Therapy 2/2/2016 Ibrance (palbociclib)

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