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Cancer: Formerly about my wife Let’s help each other out (1 Viewer)
- Thread starter Wrigley
- Start date
CurlyNight
Footballguy
Forgot to mention bc type is imp as well. IDC (invasive ductal carcinoma) is the most popular. So there are a few factors that decide if chemo would be more beneficial or not in the chances of recurrence, and not just the size of the tumour. Throwing the book at it is the best but then you have the question of over treatment that could do more harm than good. Mine was a no brainer with 7 cm tumour, high grade (3), and lymph node involvement. My surgeon told me off the bat knowing only the size of the tumour, lymph node involvement and clean margins that no chemo = it will 100% come back. But many women on bc.org don't have it so clear, and that's when a really good onc comes in. If she is ER+, she will also most likely be put on hormone suppressant pills like Tamoxifen. But that wouldn't be now. She would go on that after chemo (if she has it) and rads. Wishing her and you all the best, and hope that no chemo is really the best option for her.
JZilla
Footballguy
Wonder if any of you here who are, sadly, well versed in this topic could help me out just a bit
My dad was diagnosed with stage 4 prostate just over a year ago, since then he's gone through the gamut of radiation, three different flavors of chemo, two different "trial" drugs and now we're getting to the "OK nothing's worked, now what" part
His current, most concerning situation is that it's long since metastasized and it's the nodules in his lungs (and that cough..) that are really the scariest thing. Remarkably in all this, he's still in pretty good spirits and has enough energy to still be working 30-40 hours a week
Anyway earlier this week he asked us "kids" to help him google alternative solutions. And I like to consider myself a pretty good googler. But having just started, it's a pretty overwhelming task given the kinds of results there are to sift through. Much of it is really no-brainer stuff/we're well past that point.. but a lot of clear quackery too.
What I was hoping for here are any tips/strategies for mining the interwebs for help and next steps, whether for somebody who's really up the creek already like my poor pops, or even any more general advice. If nothing else I'd like to at least show a little more progress
Thanks!
My dad was diagnosed with stage 4 prostate just over a year ago, since then he's gone through the gamut of radiation, three different flavors of chemo, two different "trial" drugs and now we're getting to the "OK nothing's worked, now what" part
His current, most concerning situation is that it's long since metastasized and it's the nodules in his lungs (and that cough..) that are really the scariest thing. Remarkably in all this, he's still in pretty good spirits and has enough energy to still be working 30-40 hours a week
Anyway earlier this week he asked us "kids" to help him google alternative solutions. And I like to consider myself a pretty good googler. But having just started, it's a pretty overwhelming task given the kinds of results there are to sift through. Much of it is really no-brainer stuff/we're well past that point.. but a lot of clear quackery too.
What I was hoping for here are any tips/strategies for mining the interwebs for help and next steps, whether for somebody who's really up the creek already like my poor pops, or even any more general advice. If nothing else I'd like to at least show a little more progress
Thanks!
Ministry of Pain
Footballguy
I went thru this with my father who lost his battle after 5 years, he was 59.Wonder if any of you here who are, sadly, well versed in this topic could help me out just a bit
My dad was diagnosed with stage 4 prostate just over a year ago, since then he's gone through the gamut of radiation, three different flavors of chemo, two different "trial" drugs and now we're getting to the "OK nothing's worked, now what" part
His current, most concerning situation is that it's long since metastasized and it's the nodules in his lungs (and that cough..) that are really the scariest thing. Remarkably in all this, he's still in pretty good spirits and has enough energy to still be working 30-40 hours a week
Anyway earlier this week he asked us "kids" to help him google alternative solutions. And I like to consider myself a pretty good googler. But having just started, it's a pretty overwhelming task given the kinds of results there are to sift through. Much of it is really no-brainer stuff/we're well past that point.. but a lot of clear quackery too.
What I was hoping for here are any tips/strategies for mining the interwebs for help and next steps, whether for somebody who's really up the creek already like my poor pops, or even any more general advice. If nothing else I'd like to at least show a little more progress
Thanks!
How old is your dad? I don't want to be morbid but he should live for the day. Do things he might have been putting off. I'm not implying he's a goner JZilla, but these things usually have a shelf life once some of the cancer spreads. Prostate at some ages in life should be left alone.
T&Ps JZ, I'm sorry you are going thru this.
Ministry of Pain
Footballguy
You might want to have a heart to heart with him some point soon. Just tell him you want to make sure he's happy and getting to do the things he likes. Let him know you're there for him. Otherwise it sounds like your dad is happy still working so I would just go with the flow and be ready to catch him at some point. I talked to my father almost everyday once he was diagnosed. Almost every afternoon after I would get out of work we would talk. I felt like I got to say everything I had to say.
GL JZ, you'll do the right thing.
CurlyNight
Footballguy
Sorry to hear about your dad. I remember when my dad was diagnosed with PC before I knew the stage or anything, I went searching for forums to ask questions and get info. Here are a couple I had bookmarked that are active. Maybe this could be of some help. Best wishes.Keerock said:Wonder if any of you here who are, sadly, well versed in this topic could help me out just a bit
My dad was diagnosed with stage 4 prostate just over a year ago, since then he's gone through the gamut of radiation, three different flavors of chemo, two different "trial" drugs and now we're getting to the "OK nothing's worked, now what" part
His current, most concerning situation is that it's long since metastasized and it's the nodules in his lungs (and that cough..) that are really the scariest thing. Remarkably in all this, he's still in pretty good spirits and has enough energy to still be working 30-40 hours a week
Anyway earlier this week he asked us "kids" to help him google alternative solutions. And I like to consider myself a pretty good googler. But having just started, it's a pretty overwhelming task given the kinds of results there are to sift through. Much of it is really no-brainer stuff/we're well past that point.. but a lot of clear quackery too.
What I was hoping for here are any tips/strategies for mining the interwebs for help and next steps, whether for somebody who's really up the creek already like my poor pops, or even any more general advice. If nothing else I'd like to at least show a little more progress
Thanks!
http://www.cancerforums.net/forums/14-Prostate-Cancer-Forum
http://www.healingwell.com/community/?f=35
Mrs. Rannous
Footballguy
I just lost my father last September. I'm sorry you are going through this relatively early. If you haven't made arrangements just in case, DO IT NOW. Going through this without a will and/or power of attorney is not good.
And take care of yourself, too.
And take care of yourself, too.
El Floppo
Footballguy
Happy to hear Kees news... what BB said- hoping for the best at every future medical junction for you guys.
Jzilla... really sorry to hear this news, but hoping for the best for you and your dad. My dad caught his prostate C early and went with removal, which sounds like it's not an option for your dad? A gbs dad also found his early and went with seeds with great success. Removal seemed to work for my dad, but I'll never really know because pancreatic cancer took him a few years later. They don't think it was related, but who knows.
GL, gb zilla.
FU cancer.
Jzilla... really sorry to hear this news, but hoping for the best for you and your dad. My dad caught his prostate C early and went with removal, which sounds like it's not an option for your dad? A gbs dad also found his early and went with seeds with great success. Removal seemed to work for my dad, but I'll never really know because pancreatic cancer took him a few years later. They don't think it was related, but who knows.
GL, gb zilla.
FU cancer.
bigbottom
Footballguy
So sorry to hear the news. Here's a link to the NIH's clinical trials database: https://clinicaltrials.gov. It's searchable.Wonder if any of you here who are, sadly, well versed in this topic could help me out just a bit
My dad was diagnosed with stage 4 prostate just over a year ago, since then he's gone through the gamut of radiation, three different flavors of chemo, two different "trial" drugs and now we're getting to the "OK nothing's worked, now what" part
His current, most concerning situation is that it's long since metastasized and it's the nodules in his lungs (and that cough..) that are really the scariest thing. Remarkably in all this, he's still in pretty good spirits and has enough energy to still be working 30-40 hours a week
Anyway earlier this week he asked us "kids" to help him google alternative solutions. And I like to consider myself a pretty good googler. But having just started, it's a pretty overwhelming task given the kinds of results there are to sift through. Much of it is really no-brainer stuff/we're well past that point.. but a lot of clear quackery too.
What I was hoping for here are any tips/strategies for mining the interwebs for help and next steps, whether for somebody who's really up the creek already like my poor pops, or even any more general advice. If nothing else I'd like to at least show a little more progress
Thanks!
Also, have you considered a consult at Memorial Sloan Kettering in NYC? MD Anderson in Houston is another option if he's willing to travel a bit further.
JZilla
Footballguy
Thanks all, very much for the kind words and advice.
MD Anderson is one he mentioned as an example of the places he's looking into. Also mentioned doctors at Univ of Virginia, Univ of Chicago, and Cleveland Clinic. Those places (and Drs he mentioned) are easy enough to google, and I've provided what info I can find but it's not anything they couldn't have found easily (and probably already did before they reached out to the rest of us)
MD Anderson is one he mentioned as an example of the places he's looking into. Also mentioned doctors at Univ of Virginia, Univ of Chicago, and Cleveland Clinic. Those places (and Drs he mentioned) are easy enough to google, and I've provided what info I can find but it's not anything they couldn't have found easily (and probably already did before they reached out to the rest of us)
Osaurus
Footballguy
GroveDiesel
Footballguy
Wrigley
Footballguy
Mrs. Rannous
Footballguy
Cool beans.
It's also 24 years since Nolan Ryan kicked Robin Ventura's tuchas. It's a great day.
It's also 24 years since Nolan Ryan kicked Robin Ventura's tuchas. It's a great day.
Keerock
Footballguy
Mrs Keerock had regular 6 month mammogram and U/S yesterday and everything is clear... moved her to annual scans!
rustycolts
Footballguy
My wife's biopsy came back today the doc says she has breast cancer. We are supposed to go Monday to the oncologist not going to lie I am really scared, but I am not going to let her see that. I am just really at a loss at what to do and how to act. I have always been the problem solver. How do I solve this?
Idiot Boxer
Footballguy
Idiot Boxer
Footballguy
Keerock
Footballguy
Agreed. There's nothing you can do outside of supporting her and being the best "patient advocate" you can be. I won't lie, I really suck at it... but any efforts you make toward both will go a long way with her. T&P are with you, her and your family.
cheeseypoof
Footballguy
You can't.
From my experience, best thing to do is educate yourself. Be her eyes and ears at doctors appointments, etc. Do your best to understand what the doctors are telling her because she may not always remember or comprehend whats being said. But most importantly be there for her in whatever way she may need you. I'm not a man of many words, but I was there for every doctors appointment, test, etc., when my wife was going through the process for a liver transplant. I did my best to hide from her the fact I was scared to death of the entire process. Try and find your support system/outlet beyond just your wife, so that you can continue to be her source of strength.
That's the best I have to offer. I'll keep you in my thoughts and prayers.
Mrs. Rannous
Footballguy
You might want to let her see a little bit of the scared part. Otherwise, it might come across as not caring. Explain that you just have no idea what to do. Odds are good she is in a similar place. Share that. Plus all the stuff the above posters said.
Best of luck to both of you.
Galileo
Footballguy
I feel you, brother. I just spent the day today with my wife as she received her second round of chemo...long journey ahead. Just be strong...be positive and supportive. Comfort her as much as you can as there will be some tough days. At least that's what I'm trying to do... I am no expert, but I am unfortunately becoming one.
rustycolts
Footballguy
Thank you guys for your words of advice. I just hope I can be strong enough for her. Also if anyone reading this has a wife who avoids mammograms take charge and make sure they go. That is what I did I just hope it was soon enough.
cheeseypoof
Footballguy
Galileo
Footballguy
bigbottom
Footballguy
rustycolts
Footballguy
Thank you so much I may take you up on that. We go to the Oncologist Monday I guess we will find out more then. It is just the not knowing exactly whats up is what is the most unsettling. Plus my wife is already talking about not taking chemo. I hear that there are other therapies such as hormone that can be as effective as chemo especially for women my wifes age she is 58.
CurlyNight
Footballguy
Sorry to hear. I'm 3 years out from diagnosis and went through the whole thing by myself. I highly recommend this website. The forums are filled with active posters both asking questions and providing info. I learned a lot about everything to do with bc at every step of the way from there. There's a section there for caregivers as well. Docs provide medical info, there's so much more to know. There are 12 different types of bc. The forums will help you navigate through and converse with people with a similar profile as hers. I say people because men can get bc too and there's a forum there for men.
You can't solve it. Be at her side and support her. If you or her want to pm me, feel free. I'm stage 3 hopefully in remission after having had bilateral mastectomies with reconstruction, chemo and radiation. I'm on hormonal treatment now.
The site is breastcancer.org
https://community.breastcancer.org
I've been on that forum from the beginning and have actually taught my onc a thing or two. There's nothing like talking to people in the same boat.
Best wishes, and feel free to pm me if you like. Xx
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Galileo
Footballguy
Treatment options will depend largely on the type of cancer it is and how much it may have spread. My wife is only 46. There is no evidence that her cancer has spread anywhere other than the right breast yet, but is a rarer more aggressive form of breast cancer, Her 2. There were no signs of it in her mammogram a year ago, but this year quite a fairly large area of the breast is affected. They are treating it pretty aggressively with my wife's blessing as she wants to go through this once and only once if at all possible. Our plan is 18 weeks of chemo (every 3 weeks for 6 total sessions- 2 down) -> bilateral mastectomy (only right breast affected, but my wife says they're a pair and go together...) -> radiation 5 days per week for 5 weeks -> continued chemo for a year with the antibodies that are used specifically to address the Her 2 type of cancer. The oncologist is pretty confident that, even though it is a more rare and aggressive cancer, they know very well how to target it. Thus the prognosis is good, but it will be a long journey.
CurlyNight
Footballguy
If she is early stage, not doing chemo may be fine. My mom is dcis, stage 0, and had a lumpectomy and radiation. She tried the hormonal treatment afterwards and lasted 2 years on it. Side effects were debilitating. It was for me too so I'm taking Tamoxifen meant for pre menopausal vs an AI which is post. I'm 54 now.
I would check out the forums of the board I posted before Mon. She or you can read without registering. I suggest registering and asking questions in the just diagnosed forum with the info you have. And I'm happy to help if you like.
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CurlyNight
Footballguy
Galileo
Footballguy
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CurlyNight
Footballguy
ER+ I assume. Yes there are targeted therapies including one relatively new one. ER+ PR +HER+ is called triple positive. I recommend you and your wife check out the community link I posted above, triple positive folks.
Best wishes. It's long, 2 years for me because I had complications, but it's doable. Xx
Galileo
Footballguy
CurlyNight
Footballguy
There are some people I've seen on the community with her profile. I'd read/ask questions there. You'd be amazed how knowledgeable they are there and you may learn something a doc doesn't tell you or forgets to, plus great tips. I got a ton more info from that forum. Don't just go by what the onc says. You bave to be your own patient advocate, do your own research too.
CurlyNight
Footballguy
Here is a thread of women with your wife's profile if she would like to join in.
https://community.breastcancer.org/forum/80/topics/767013?page=62#post_5317989
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rustycolts
Footballguy
Thank you CurlyNight. I just went to the site and saved it. I will register today and read through it. I appreciate it. If you don't mind I may contact you later after I get my head wrapped around this whole thing. I think my main concern will be how to support her and help her without making her feel more worried.
rustycolts
Footballguy
Galileo I am so sorry to hear about your wife. I will pray for her along with my wife. I really know nothing yet about my wifes I guess we will find out more Monday. I am wondering if they can tell what type from the biopsies? Perhaps we can help each other get through this.
Galileo
Footballguy
Yes, the pathology report will have the information you need. The estrogen + (ER) and progesterone + (PR) varieties are sensitive to hormonal based treatments. If negative for those, hormonal treatments are less likely to do you much good, from what I understand. Growth and spread of the HER 2+ variety, like my wife's, is promoted by a particular protein, human epidermal growth factor receptor 2 (HER 2). Thus the treatment targets blocking the receptors for that specific protein. One of the toughest situations is a triple negative variety. If not positive for any of those things, the course of treatment is much less defined.
ETA...thank you for the prayers. While I am not the religious type, my wife is and she will certainly appreciate it. You and yours are in my thoughts. We can certainly get through this together! Keep the lines of communication open!
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Keerock
Footballguy
This thread really pisses me off. Somebody, somewhere needs to find a cure and soon. Seems like everyone is affected... I personally know more than 20 people who have/had cancer... 4 people in my immediate family. I know at least 10 who have died from it. This #### has got to stop!
I'm no expert, and I have no grand illusions that I know how to handle dealing with it, but I'm happy to help any of you any way I can... just PM me.
F Cancer in the mouth!!!!!!
I'm no expert, and I have no grand illusions that I know how to handle dealing with it, but I'm happy to help any of you any way I can... just PM me.
F Cancer in the mouth!!!!!!
CurlyNight
Footballguy
Feel free to contact me any time. There are men on that site that post questions for their wives for themselves or because wife doesn't want to. You may want to post your questions under the just diagnosed forum for others to chime in too. If you can believe it, some womens husbands withdraw or think they should be over it after x amount of time. You'll be treated like a saint.
CurlyNight
Footballguy
If someone is ER- then as far as I know, you aren't offered hormonal therapy. ER status shows the degree the cancer cells are dependent on estrogen to survive. I'm 95% ER+, 50% PR- so high risk. My ki67 score is 75, very high.
I went to a how to prevent bc recurrence seminar last year. Exercise after treatments can cut your chances of recurrence by half. Diet is important too but plays a lesser role in recurrence.
For Rusty..
Your Wife will get the details of her tumour on Monday. If it's not obvious that chemo would do more good than harm then there's a test called oncoscore. It measures whether chemo would be better to do. The result is called oncotype. Many stage 1 people have a difficult time deciding chemo or no chemo and ask for their onc to do this test. I'd also suggest posting questions under the just diagnosed forum in prep for Monday. The group there are warm and caring. Don't jump ahead to the other forums. Focus on where your wife is at now. Then when it's time for something else, go to that forum such as surgery, chemo, radiation, etc. There is a forum for caregivers which is nice, financial, you name it it's there.
Again, best wishes to both you guys. It's just as rough on you too. Big ups for being there for your wives. Many aren't. And of course if I can be of help feel free to contact me. I'm willing to give you guys or anyone in this ####ty boat my phone number. I'm willing to talk to you or your wife. Text can be hard as it's not a natural flow of conversation so things may get missed.
Keeping you both and your wives in my ts and ps. Xxx
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CurlyNight
Footballguy
Here is one thread of a husband whose wife was just diagnosed. The mods posted the helpful links in there for caregivers as well.
https://community.breastcancer.org/forum/5/topics/868475
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