Husbands/Partners of Stage IV Breast Cancer
Comments
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I am sorry too. It is possible that eribulin will hold the disease at bay for quite a while. This disease is such a roller coaster!
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MfromAus - Just popping in to say hi and hope the new tx went well today. Keeping you in my thoughts.Linda
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Hi Linda & pajim,It looks like there are not too many side effects of the Eribulin at the moment. We were told it would be 2 full cycles before we know if it's going to work. The other thing we need to watch for is anaemia, about 25% of people on Eribulin need to stop because it. It was a tough week at home, a lovely lady who was my wifes chemo buddy and went through the Taxol cycles at the same time passed away last Saturday. I keep trying to be positive, but some days it's just so hard.
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My condolences to you and to your wife at the lost of a friend. I can imagine this is very hard for you. Some (most!) of the time I feel my whole experience is much harder on my husband than I.
I don't have any words of wisdom, but I'm wishing you a lack of churning mind and gut. Glad the side-effects are minimal. Hopefully they'll continue to be so. She should eat foods with protein and iron. Vegetables and red meat.
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Hi pajim, Maybe I spoke too soon about the side effects. On Tuesday night we ended up in an emergency department, my wife had a high fever and was feeling very ill. They couldn't identify the reason for the fever but one possibility was the chemo was not being tolerated well. My wife is certainly doing high protein & high iron as she is following a Ketogenic diet. Every day throws up something new, another challenge, another worry, but we're doing the best we can.0 -
Hi all, I'm not really sure how to feel. All of last week my wife was very weak with shortness of breath and a racing heart. We went for her oncologist appointment on Monday where we were told that it would not be done, but she needed to be admitted to hospital for some tests. She has had a raft of blood tests, CT scans, heart echo & ECG. The good news is they can't find anthing wrong with her heart, the bad news is they have no idea of what's causing the symptoms. There is a possibility it's a virus, although the nasal swab was clear, or a severe reaction to Eribulin, but her oncologist has never seen this before. Her resting heart rate is anywhere between 110 & 130 BPM and her O2 sats are about 90%. Nothing that they are too concerned about, but she has gone from walking 5km per night to struggling to walk 50 meters without needing a rest. We go back again next Monday to try to get some answers, we also get another CA15 number.One of the hardest parts for me is feeling that I can't really talk to anyone. I'm torn about what to tell our children, at the moment the mantra is pray for the best, prepare for the worst.
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MfromAus, sorry you guys are in this position. I hope they find the reason for the symptoms soon and can do something to help.
I just had similar symptoms (higher heart rate, low sats- not as bad as your wife's tho). Mine was caused by a pleural effusion. I guess they would have checked for that. I could tell I had fluid there, from the heaviness & discomfort.
Thinking of you both
kt
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MfromAus - Your wife must be feeling so uncomfortable. I am soooo sorry. She's really going through the wringer. Is there a social worker at the hospital that you could speak to, or perhaps a therapist? When my late husband was sick, I was lucky to have a psychologist I could go to and speak to someone who was neutral, to get everything off my chest and to be understood, validated and get good advice. Don't hesitate to ask for help. We are also always here to "listen" and support you. This is also a place when you can rant, vent, whatever you need. It's hard going through all this crap. And weirdly enough, I found it harder when my husband was sick than now me being sick. Because we feel so helpless when it's our loved one.
I'm sure you have a list of questions prepared for Monday and I hope you get answers, but first and foremost, that your wife feels better slowly but surely. Why can't she be admitted in hospital?
Linda
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Hi Linda,They did admit her for the tests, but as soon as they were done she wanted to go home, which is better for her & it's good for our children. Given that is was only 2 weeks ago she lost a friend in the same ward, she wants to spend as little time as possible in hospital.
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For sure home is the best place to be!
Linda
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MfromAus, I'm so sorry they can't figure out what is going on. It's hard when we realize that medicine is at times an art. We so want it to be a science all the time. When my Mom has those symptoms it's atrial fibrillation, but if they did the ECG and echo they would have spotted that.
I don't have any advice. I'm glad she's home and your family is together. I hope she feels better soon.
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Hi pajim, unfortunately the news is no better. I spoke tonight with the oncologist and my wife needs to have blood tests in the morning. The weakness is becoming much worse and she is now house bound. The talk of giving up has started again, it is just so frustrating not knowing what's wrong or what to do. I will post again when we know the results
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Well things are always challenging. My wife was admitted to hospital on Friday night with her symptoms getting worse. The results of the blood test were not great, LV (liver) markers were still high, and CA15 marker has gone from 82 to 190 is 3 weeks.
They told us to expect there would be brain mets, but a CT scan has come back clear, her heart is fine, lungs are clear, but her O2 sats without oxygen were at 79%.
Right now they don't know what it is. We have been given 3 possibilities, one is a severe reaction to Eribulin, another is cancer in the fluid surrounding the brain and the other is lots of micro blood clots that are stopping oxygen transfer in her lungs. None of them sound great.
For now she is on oxygen, is having injections of Clexane and she is also having steroid tablets.
I will post again when we know what's going on.
M
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MfromAus - So very sorry to read this. My thoughts and prayers are with you all.
Linda
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MFromAus,
My thoughts and wishes are with you and your wife. This must be such a difficult time for your family.
This is a controversial topic often dismissed, but some patients might consider possibly being seen by a mycologist for urine testing for trichothecene mycotoxicosis and testing for fungal-induced tumors. Inhalation mycotoxicosis can lead to compromising lung issues. Many people with fungal-related cancers don't always exhibit fungal symptoms. Few hospitals and cancer centers test for this or offer anti-fungal therapy. (I have some lung scarring possibly caused by mycotoxicosis and co-infections, although speculation at this point, but colonization started in mucous membranes and progressed to lungs.)
Liver issues and liver cancer are said to be sometimes caused by aflatoxins, for example. The engineered lyme disease (from infected ticks) is another fungal disease commonly associated with these co-infections. Bathing with a diluted solution of part water-amonia solution can sometimes help with some toxigenic molds and mycoplasma pathogenic infections. It is believed by some scientists that 55% of Americans & their homes harbor mycotoxins. What was once believed to be allergy issues are actually health-threatening toxicity. The billion dollar homeowners insurance industry does not want this information out there in the public domain. Amonia should be used as opposed to bleach.
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The hospital my wife is being treated at has checked for viral, bacterial and fungal and nothing shows up. The clexane doesn't seem to be helping which may start to rule out blood clots and given there is still a slow deterioration it seems highly unlikely it is just a reaction to Eribulin. They are doing some nuclear medicine tests tomorrow to see what's actually happening in her lungs, but if they don't find something soon I'm worried it may be too late.
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MfromAus, such discouraging news! I'm so sorry. Thinking of you and hoping the find something that works.
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At last we've got some answers. They did a VQ test today and it showed up multiple pulmonary embolisms (blood clots) in my wife's lungs. Apparently this was not caused by the chemo but was just bad timing. It was explained to us that with BC she is much higher chance of clots and this one probably came from one of her legs and when it hit her heart broke into lots of pieces and blocked parts of her lungs.
For now it's continued Clexane (this will now be every day for the rest of her life) and oxygen. If there hasn't been significant improvement by the end of the week they suspect that some of the clots are caused by small mets growing in the lungs.
I will let you know later this week how things pan out.
M
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MfromAus - Glad you're getting answers and hoping they are clots and not mets. Pardon my ignorance, but what is a VQ? Praying for continued improvement. How are you holding up?
Linda
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Linda,
VQ is a nuclear medicine test where they inject a radio active die into the blood and then you breathe in a different radio isotope. During this they video the way the 2 react and can see what's going on.
I'm not really sure how I'm holding up, I think it might hit home when things settle down.
M
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Thank you MfromAus. Take good care of yourself. I know easier said than done but I speak from experience. You are on my list of prayers.
Linda
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M we r here hang in there...
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New here...but here to talk to Stage IV BC husbands and/or widowers. (Is that still a term?) It's been almost 5 years since my wife passed away...and just now I'm beginning to own up to how I behaved. I found little if any places to really let it out...and talk about ME during that time. Seems selfish I suppose...that I wanted to talk about me...but inevitably most if not all conversations turned to talk about Laura and what her prognosis was...treatments...the kids...that kind of thing.
I hope this doesn't seem selfish...but I'm wondering if other men need something like this. A place and a guy to talk to...about himself. Jeez...just saying that sounds selfish...but I could've used someone to vent to...and just get mad or sad or whatever. Just as women with BC have things that only other women can understand...I think men have issues that only other men can understand. I could be wrong. Completely wrong. Maybe this will answer that question though.
So...that's my story.
Like everyone else I am sorry for those of you who are on here. It sucks. There are some good things as I look back. Trouble is...I missed most of them while they were happening. Maybe I can call them to someone's attention so they don't look back with too much regret.
Thank you for letting me be here. I'll do my best to be a cool person.
AK
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Hi AK, my wife is still battling but I can completely sympathise with you. I think a lot of people don't know what to say so they either avoid the subject or withdraw from your life. Just reading your post I could feel the sting of tears starting because I can feel your pain. Sometimes I just want to curl up in a ball and fall apart, but I know that I need to be strong for my wife and our children. I use this forum as a place to vent when I need to, you will find that the people here are amazingly understanding.One of the things that has helped me is reading a story written by Dr Peter Bach, it's called "The day I started lying to Ruth". It has helped me realise that some of the things I'm going through are not unique to me. In fact I would suggest it is common, but as you said, during the fight the focus is on the person fighting, and right at the moment, that's where all my attention is.
M
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Hi Jakeon, Thanks for sharing your story. We appreciate you joining, and hopefully helping others.
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Here's the link to Dr. Bach's article in the New Yorker. He's an oncologist himself.
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it's a new goal for me. I hope I CAN help...and stick with it. I owe it to somebody I think.
MfromAus I'm thinking you're right...this whole thing is unique to us...but clearly not. I suppose that's I hope I can be of some help. Not even sure where to start...so I guess I'll visit here often and see if I can offer a few words when asked. (Dontcha' hate it when well meaning people try to tell you how it is...or what you should be feeling? I don't want to be that guy. I went to be the one who'll grab a beer with you...and listen to how sucky it is sometimes...and answer any questions as best I can.)
Not sure this is making sense...but it will as I share more and talk, etc.
Thanks for the warm welcome. I can't believe I'm putting myself back into this realm...but as I said...I believe I owe somebody.
Peace out...
AK
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Hi all, a quick update.
My wife has now been in hospital for 10 days and there seems to be no improvement. When we first got in her O sats were 79%, but went to 97% with 3 liters per minute of oxygen on nasal prongs. After 5 days she seemed to be holding steady at 91 - 92% at 3L/min, but now is down to 86% at 3L/min. They have put her on an oxygen mask at 5L/min and it brings her O sats to 97%.
She is so weak and very pale. She has also started coughing up small amounts of blood which the doctors said not to worry about too much, but I'm scared.
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MfromAus - I'm so sorry to hear your wife, you and your family are going through this. Wish I had some words of wisdom. The only thing I can say is that I pray for you all that things turn around.
Hugs and love to you all - Linda
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MfromAus, it sounds very frightening, for both you and your wife. It's impossible to know what to say, but I'm thinking of and your family and wishing you well.
Pam
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