boyfriend d/x with stage 4 cancer
 

i am almost 5 yrs out from BC, almost done with tamoxifen. i lost my husband in 2007 to stage 4 esophageal cancer only 10 weeks from diagnosis. on sunday my boyfriend went to the ER because of unrelenting fatigue and lack of appetite and dizziness 5 wks out from the flu. blood tests showed him anemic and in need of 2 units of blood, so they admitted him. i KNEW at that moment he had cancer and it was advanced - that was exactly how it had gone down with my husband (who needed 4 units). CT showed 'nodes on liver' so my worst fears were being realized. they did a blood test for a primary cancer and he came up positive for colon cancer, confirmed by another CT and colonoscopy.

i am absolutely beside myself. i can't believe this is happening again. he asked me to be calm and strong and 'his rock' and when i talk to him i am, and sometimes i am even positive and hopeful by myself, then have extreme meltdowns. he's got a consultation at Dana Farber april 6 and will have surgery on his colon and assigned his chemo cocktail. brain scan and all showed no other mets.

the reason i am turning to you guys is because i am extremely anxious about his continued level of fatigue. he felt great immediately following the blood transfusion and dealt with all the news. however, yesterday when the onco called him about his path report she told him he was Stage 4 and apparently he hadn't realized that previously! i thought he knew. i swear i even referred to it. anyway, he said that he was 'enjoying looking at the sky and trees' and couldn't wait to climb a mountain again (2 yrs we vacationed in cinque terre and hiked). but at 9 AM this morning he emailed saying he was going to try to come over but wasn't sure he had the energy.

i know the psychic drain of a cancer diagnosis quite intimately, so i suspect some of his exhaustion is from that. god knows it makes you want to curl up and hide. but i wanted to ask those with liver mets at diagnosis - did you feel a high level of fatigue? surgery is 1pril 8 and yet he has only walked up and down his driveway. for years he went to CrossFit and until the flu he was quite a vital and fit man. his kids are going to pay for a personal trainer who deals with ill people but it hasn't happened yet. i am so worried that his fatigue will make him lose even more weight and lose strength. he also has blood clots in his family history so i stress to him how important it is to MOVE!!

he is a worrier, big-time, and has had much on his plate in the past year. i am afraid he is collapsing under the weight of this. is this kind of fatigue normal after he got all that blood back? i know this is breast cancer specific here, but stage 4 and liver mets must still have a lot in common across the cancer board.

i am giving him Love, Medicine and Miracles because i think he will gain a lot from reading it. i am re-reading it myself. i realized last night while reading it that i was the 'exceptional patient' the book speaks of. i want jon to be the exceptional patient, too. but i know i can't make someone pull themselves up by their bootstraps even if i am helping. so i am distraught....

v

Re: boyfriend d/x with stage 4 cancer
 

I'm so sorry. I haven't been in that position but I can only say that you need to support him like you wanted to be supported when you had cancer.

He does have to pull himself up from his bootstraps and you know that the time between diagnosis and treatment is the worst - limbo land. I'm sure there are social workers/psychologists who are available to help both of you through this.

Cancer sucks

Janis

Re: boyfriend d/x with stage 4 cancer
 

thanks so much for responding, janis. it's true, he has to break out of his current daze and i need to find someplace to talk. i thought i could here, but 47 people read my story and only you responded. valerie

Re: boyfriend d/x with stage 4 cancer
 

Hi Valerie,

I'm sorry you feel that you're not getting the support you expected here but you do have it. You can count me as one of those who read the post and made no comment. For one thing, you seemed to be specifically reaching out to those with liver mets, which I'm glad to be able to say, I don't have. Also, I'm exhausted today so I find it difficult to put together a coherent sentence.

Having said that, I realize that I can speak somewhat to the fatigue, since I'm always so tired. Fatigue probably isn't unexpected at this point. For one, he has cancer. For another, he's carrying the burden of having just been told he has cancer. Either of those on its own could drain the energy out of anyone and he's dealing with both. It's probably easier said than done but at this point I wouldn't be overly concerned about the fatigue. If you're going with him to his appointments I would ask the oncologist about it and see what they say. They would know better if it's normal or not.

In any case, I'm glad you're there for him and he's lucky to have you. Again, don't think you don't have the support of those of us on the board because you do, we just don't always know what to say.

Re: boyfriend d/x with stage 4 cancer
 

v-ness,
I know exactly how you feel when you post with need, information, or something great to share and it doesn't seem acknowledged.
I don't visit here much these days, but checked in today, and I'm glad I saw your post. Life seems unfair sometimes, and you have had your share of serious challenges. Now someone you love is in need and hurting. You want it all to go away. I get it.
I just want to say I'm sorry that cancer has infiltrated your life again...but your boyfriend has much to gain from your insight and experience.
My doctor's wife had colon cancer with liver mets, in fact, her liver was described as a shriveled up piece of sponge-like material. That was 15 years ago. She had colon surgery and the chemo rid her liver of tumors and it is now fully regenerated and she is drug and disease free. I hope her story gives you a little hope.
Medically, you are in a good place with Dana Farber. I would also look into MART-10 Vitamin D infusions, as well as glutathione infusions (which eliminate or decrease neuropathy when on chemo). The MART-10 has shown great efficacy in stopping liver cancer cells in particular. Please google for more information on that. If you'd like the name and number of a hematologist/oncologist that specializes in alternative medicine and supplementation, please PM me.
Keep your head up.
Karen

Article
19-Nor-2α-(3-hydroxypropyl)-1α,25-dihydroxyvitamin D3 (MART-10) is a potent cell growth regulator with enhanced chemotherapeutic potency in liver cancer cells.


Kun-Chun Chiang

Chun-Nan Yeh

Huang-Yang Chen

Jim-ming Lee

Horng-Heng Juang

Miin-Fu Chen

Masashi Takano

Atsushi Kittaka

Tai C Chen
[more]
General Surgery Department of Chang Gung Memorial Hospital, Chang Gung University, Keelung, Taiwan.
Steroids (Impact Factor: 2.72). 08/2011; 76(13):1513-9. DOI:*10.1016/j.steroids.2011.08.006
Source: PubMed
ABSTRACT The discovery that the active form of vitamin D, 1α,25-dihydroxyvitamin D [1α,25(OH)(2)D] can modulate cellular proliferation and differentiation of cancer cells has led to its potential application as a chemotherapeutic agent to treat a variety of cancers. However, the use of 1α,25(OH)(2)D is limited due to its lethal side effect of hypercalcemia upon systemic administration. To overcome this drawback, numerous analogs have been synthesized. In this report, we examined the anti-proliferative activity of a new analog, 19-nor-2α-(3-hydroxypropyl)-1α,25(OH)(2)D(3) (MART-10), in HepG2 liver cancer cells, and studied the potential mechanisms mediating this action. We found that MART-10 exhibited approximately 100-fold greater activity than 1α,25(OH)(2)D(3) in inhibiting HepG2 cell proliferation as determined by cell number counting method. MART-10 was also approximately 100-fold more potent than 1α,25(OH)(2)D(3) in the upregulation of p21 and p27, that in turn arrested HepG2 cells at the G(0)/G(1) phase to a greater extent. Given that no active caspase 3 was detected and treatment with 1α,25(OH)(2)D(3) or MART-10 did not further increase the fractions of apoptotic and necrosis cells over the controls, the growth-inhibitory effect of 1α,25(OH)(2)D(3) and MART-10 on HepG2 cells may not involve apoptosis. Overall, our findings suggest that MART-10 is a good candidate as a novel therapeutic regimen against liver cancer. Further pre-clinical studies using animal models and the subsequent human clinical trials are warranted.
http://www.researchgate.net/publicat...r_cancer_cells [accessed Mar 28, 2015].

Re: boyfriend d/x with stage 4 cancer
 

I don't have advice, but wanted to chime in and say that I hope you and your BF find the strength you need, along with the support of loving family and friends. Dana Farber is an amazing place. I owe them my life :) hugs and keep us updated!

Linda

Re: boyfriend d/x with stage 4 cancer
 

V-ness I am so sorry for all that you and your boyfriend are going through. I can't reply to you in regards of fatigue and and liver mets as thankfully I was not diagnosed at stage 4 ... But what I can say is this as somebody else mentioned just care for him and treat him I the way that you wanted others to care for you.
My best friend of 22 years was just diagnosed with breast cancer with possible node involvement ( still pending biopsy results) that said I am trying my hardest to treat her how I wanted to be treated during my Cancer diagnoses. I have also made sure to only give her advise when she ask for it and I'm very cautious in giving that advise. For the most part I just sit and listen.
I wish I had the words to make you feel better but all I can say is that you and your boyfriend are in my thoughts .
Tamara

Re: boyfriend d/x with stage 4 cancer
 

No advice but just wanted to give you a virtual hug. Your partner is in extreme shock so maybe he just needs a little time to get his head around his diagnosis and be alone for a while. Wishing you both the best of luck.

Re: boyfriend d/x with stage 4 cancer
 

I was one of the 47 who read your original post and did not reply - I don't have any advice but just wanted to say I am thinking of you.

I was diagnosed 2 years ago and had a very small Liver met found 3 months later! (Oncologist told me that I had no symptoms at that time) After Doxetaxol, Herceptin and Perjeta it is no longer seen on scan!
Regards
Juls



Her2+ Er+ Pr+
On Herceptin, Perjeta & Femara

Re: boyfriend d/x with stage 4 cancer
 

Dear Valerie,
I'm so sorry to hear about the loss of your husband and the grief you faced then and now. I don't know what to say except that I hope you and your boyfriend find some answers and a treatment plan that works. My heart truly breaks with every new diagnosis of cancer. I think even though readers may not post, they are still thinking of you. I understand the need for a reply. That's why I'm posting. I don't have any advice. But I do hope you have a good support group behind the both of you. It's ok to have a meltdown and feel overwhelmed by all this. I hope you'll come back and post on his progress. I'll follow this thread and offer any encouragement and support I can.

Re: boyfriend d/x with stage 4 cancer
 

I am sorry that I have little to contribute but my good will. I have not had to deal with supporting a family member who is going through treatment so I don't even pretend to understand what it might be like on the other side. I'm sorry that you are in this position (again) and I hope that things work out for you both.

Re: boyfriend d/x with stage 4 cancer
 

I do not have any supportive advise on your boyfriends dx.
I can only reach out to you and say that I am so very sorry that he has been dx. It is unfair that you would have this happen again to you. All of us are so fragile and can be dx. at any time
with this dreaded disease. Let alone that you had to fight if yourself, but now again with a loved one. You have and must take care of yourself to remain strong and supportive of him.
Keep your immune as healthy as possible. This is such a stressful time for you. I wish I could help you with more.
My thoughts and prayers are with you and Jon and his family.
Kindest Regards,
Jean

Re: boyfriend d/x with stage 4 cancer
 

Hang in there. Come here when you need to let down, vent or just be heard. Take care.
thinking of you
Lisa

Re: boyfriend d/x with stage 4 cancer
 

I am reading, and was not going to reply as I can't contribute to the conversation specifically. But of course all of us want support in rough times, so I will offer you that
Knowledge of Cancer can be a double edged sword because you know some of the negatives and hurdles he has ahead. But you also know the language and how to get through the confusing first days in cancerland. And how much hope that can be found
Remember the things that helped you in the beginning. Keep notes, ask questions, be an advocate. Get a second opinion. Let the dust settle and always keep the faith

Re: boyfriend d/x with stage 4 cancer
 

I just want to say too that I am so sorry you are both having to go through this. It truly does suck.

Carol Ann

Re: boyfriend d/x with stage 4 cancer
 

Dear Valerie -
I share the shock and extreme letdown of an advanced cancer re-entering your life. I saw your post but was at my mother's across the state, where I often am these days.

One thing I can speak to is mets to the liver. My BC went to my liver big time, but I am fortunate that the drug combo worked, finally leaving only 3 small areas of scar, and then no evidence there ever were any tumors. The liver will regenerate, and I am hoping by now your dear man will have begun treatment or had his surgery.

With breast cancer these days chemo is often given prior to surgery, but I have no idea if they do the same for other cancers where chemo is indicated.

PS - Be aware that non-members may view posts, but not reply. So many of those early readers could have been among the large number of non-members who view this site.

Re: boyfriend d/x with stage 4 cancer
 

Dear Valerie,

I was one of your 47 early readers. I, too, didn't know what to add to what was said to you in the beginning--to remember what kind of support you needed and offer your boyfriend those things. On reflection, I do have something to add. Men and women are different, and every individual is different, so now my advice would be to pay close attention to what he's going through and how he's showing his needs, and try to respond appropriately to his signals.

I agree with Bonnie's comment about how knowing so much about cancer can be a double-edge sword. Try not to let your knowledge of the dark side overwhelm your ability to find hope in the situation. I fell into that "knowing too much" trap myself recently. I shared with one friend that things looked pretty grim for a mutual friend with Stage IV cancer. She said, "you never know how it'll be for her." She was so right. Some people with grim diagnoses survive anyway. And some who "should" do well actually don't.

The best thing you can do for your boyfriend is take care of the anxiety, fear, and grief that this is triggering in you. Whenever someone experiences trauma, it usually dredges up past losses and traumas. Your feelings about this are real, and valid, but it's possible your reaction is conditioned by those ghosts from the past. You need to take care of yourself so you can be strong for him. As the saying goes, "One cannot give with empty hands."

This situation sucks, and it's totally unfair. I'd be mad and hurt too if I were you. I'm sorry you're going through this.

Re: boyfriend d/x with stage 4 cancer
 

I'm so sorry, Valerie. Praying for many, many good days, weeks, months, and years for both of you.

- Penny

Re: boyfriend d/x with stage 4 cancer
 

That is too much to absorb for one person. I can imagine the shock and fear both of you felt. I hope he finds his own personal way of dealing with this and I hope you find the strength to be his rock. But find yourself a rock too, as this is a tough ride you are facing. When I was first diagnosed, my husband could not deal with it at all, so I was glad that some of our friends talked with him and gave him support. I found that I had 5 fabulous girlfriends who were all there for me in their own way. Two of them accompanied me to doc visits, one took a day off to be with me when I was just diagnosed (she's a dermatologist with a busy practice) and was there for me when I had questions, another one looked after my kids when I needed rest and the fifth took me skiing. I also had two online friends who corresponded with me through email every day during my treatment. None of them had to carry the whole burden of supporting me, but together they formed my safety net that kept me sane. So perhaps find your own safety net, so you can be his rock. And of course we will chip in here. This is where you can blow off steam any time, day or night.

Hugs

Jacqueline

Re: boyfriend d/x with stage 4 cancer
 

thank you, everyone, for your responses. i only just came back after 2 months away. i appreciate everyone's thoughts. i am a loner in real life, and just wanted the kind of hope i found when i got diagnosed back in 2009. jon, in the meantime, had 1/3 of his colon removed at brigham & women's and started his chemo a month ago, adding Avastin in next week. his liver is littered with small mets and has one that is 8 cm in size. that said, he has only had small times of fatigue each chemo, rejoined CrossFit on sunday and bought hiking boots on monday! he is not in denial, he is living life with open arms and plenty of hope. i told him i'd have to induct him into the 10% club (10% of us have little to no SE's from chemo). although we should have been in italy the past 10 days, we cling to the hope that it will come true next may. he brought me calla lilies like those that grow wild in Cinque Terre for my birthday last week and healing Herkimer Diamond crystal ring while he carries a bigger on his key chain. he's never been religious, but now carries a st. peregrine medal i gave him, a little cross from medjugorje, and prays to st. jude. funny how you pull out all the stops when you're life is in danger.

i have courtney leboeuf's book here to read and to quote to jon since she was a powerhouse of hope.

valerie