ComplexHiAv8r
Well-Known Member
So sad to hear. Thoughts and prayers for your wife and family.
Cancer... It's total ass!
- Thread starter TUCKnTRUCK
- Start date
bustinminimums
Well-Known Member
My mother was just diagnosed with a form of skin cancer about a month ago and hoping it is treatable. Best wishes for your wife's speedy recovery.
bskTPA
Active Member
From one breast cancer family to another, please accept my thoughts, prayers, support, hugs, and similar obscenities for the disease itself.
As cliche as it sounds, try to stay as positive as you can. Remind your wife everyday that she is a fighter, a champion and stronger than she knows. Remember to tell yourself the very same thing.
Cessnaflyer
Wooooooooooooooooooooooooooooooo
I've been around cancer a lot when I was growing up. I would go on rounds with my grandpa who was an Oncologist and the best cure was a smile and positive attitudes. Good luck on the journey.
deadstick
Well-Known Member
That really sucks. Good job at being persistent. One thing about the trial, they do not do "sugar pills" or placebos with cancer treatments. The study is comparing the current chemo standard (and the results) to those of the experimental treatment. To give a cancer patient a placebo as treatment is unethical. Double check on the particulars of that trial.
I just visited the blog -- great job!
I just visited the blog -- great job!
TUCKnTRUCK
That guy
The study is looking at adding drugs to the current plan of action, so with the placebo she would still receive the standard level of care - but potentially none of the benefits. The placebo would just be a bag of saline run in place of the additional chemo regimes. Because the drug is actually already approved for use on it's own, the Onc. Can still use it, we get into a bind because CIGNA isn't going to pay to just add a $9,000 per shot drug(carboplatin may be as much as $20k per infusion) to the mix "just because"... So it would be on us to fund it.
Right now she is doing 4 cycles of Adriamycin and Cytoxan together, the n 4 cycles of taxol.
The study is looking at adding carboplatin and avastin to the taxol regime. Placebo gets straight taxol, group 1 gets taxol + carboplatin, 2 gets taxol plus avastin, and 3 gets all of them. They are looking at acceptable levels of toxicity, efficacy, and of course results. In the phase 2 study, nearly 60% of stage iii breast cancer patients who received all of the drugs had no evidence of disease when they went for surgery- and that's huge!
Of course I only want what works for her... So we're doing what we can to see if we can make it happen.
moxiepilot
Well-Known Member
Watching is the worst, since as you said there is little to do to fix the problem. The best you can do is support and help through the tough days. Been through skin, lung, bone, brain, breast and other cancers with family. It's tough, but ask for support when you need it. Best of luck with the situation.
bskTPA
Active Member
What an excellent idea.
I think @TUCKnTRUCK mentioned they're covered by CIGNA and receiving favorable benefit outcomes with few obstacles, but I think we all know that insurers can be [insert expletive here] on a good day, so if I can be of any assistance, I'm in.
On a side note -- and this is before I bumped my head and decided I wanted to go into flight dispatching -- I've spent the past few years running my own consulting business in which I fought health insurance companies on a near-daily basis, getting providers paid and ensuring patients received the contractual benefits they're entitled to. So while denials and appeals are probably not the first thing on your mind right now, please let me know if I can provide any advice should the need arise.
Last edited:
TUCKnTRUCK
That guy
I assumed with the twins that we were going to have mounting medical bills, so I signed up for our high level plan... So yes I am lucky in that I don't have a deductible, diagnostic imaging is covered 100%, as is the normal chemo. The problem we run into is the "unapproved" or not normally used, and we will have to fight cigna should it come to that.
Financially, the big hit comes from losing 40% of my wife's income, while maintaining child care. 3 kids with one in private (preschool) cost an amazing 24k/yr.
The support I have received from my office has been outstanding - unbelievable. So many people have donated and pitched in without our asking, that I have been humbled. I have never been on the receiving end of so much love and support before. Coworkers who have never met my wife before have taken her in and treated her like family. They have a vested interest and read the blog frequently. She did manage to make it down for lunch, and had a stream of people she had never met approaching her to chat, say hi and get to meet her. I can honestly say, switching jobs nearly 2 years ago has easily turned out to be one of the best career choices I have ever made.
I am similarly humbled that forum members would be looking to help us out. My wife want to participate in the Philly preeclampsia walk before BC, so that has become her goal now. We haven't really done much fundraising, but we would love to have more members on the team! ( or donors).
http://www.promisewalk.org/pfpw/teampage.asp?fundid=4740&nnaffundid=47
We also have a Facebook group (kick it with Keenan) send a request to join if you want to participate in conversations, or, as before http://www.kickitwithkeenan.com
From our family to all of you, thank you!
I've been going through most the same thing, except with my father. He just had the top lobe of his right lung removed. This after he had a bout with cancer circa 2008/9. The medicine and doctors are much much better than they were even 5 Yeats ago. My mom also worked at an oncologist for nearly 25 years. If you have any questions, feel free to shoot me a PM. And just because the doctors say so, doesn't mean it should be so. Always question them, and make them explain why. Even with most of them being very experienced, they still get tunnel vision.
HRDiva
Well-Known Member
I am so sorry. I lost my cousin at age 42 and my sister is a two time survivor.
Please call Cigna and get a Case Manager assigned. This person will take over and coordinate all the appointments, in- home care, etc. they will ensure you get services to which you did not even know you were entitled.
If you have an Employee Assistance a Program, reach out to that too.
You mentioned a Philly race. Are you in Philly? I am and I can help pull in other resources.
Please call Cigna and get a Case Manager assigned. This person will take over and coordinate all the appointments, in- home care, etc. they will ensure you get services to which you did not even know you were entitled.
If you have an Employee Assistance a Program, reach out to that too.
You mentioned a Philly race. Are you in Philly? I am and I can help pull in other resources.
Murdoughnut
Well sized member
I'll add to the list of others sending you well wishes - as a parent of twin toddlers myself, I can't imagine how difficult this must be, but you and your wife's optimism is truly incredible and inspiring.
EDUC8-or
Well-Known Member
And that's all you need to do. Thanks for sharing your story, you have a beautiful family and are all in my thoughts and prayers on this Easter Sunday.
TUCKnTRUCK
That guy
We live in Marlton (near cherry hill),
So far we've been having some pretty different experiences... At some point I plan on putting together "our findings" aka a list of what worked, what didn't work, and how we got there...
We have been receiving phenomenal amount of support, it has been simply amazing! MD Anderson has been amazing as well. My wife is not really the normal case, so they are paying a bit of extra attention to her. A recent example is the administration of Adriomycan. Typically it is given as a straight injection. My wife was having issues with altered taste and extreme smell sensitivity due to it ( not to mention the possibility of congestive heart failure etc). The Dr had read that mixing the infusion with saline eased some other known side effects, so they have it a shot ( much more time consuming, but they would backfill the line with saline and infuse. This time around several side effects that were normally treated with additional medicine were almost alleviated. It's been a wonderful change!
On the positive side, despite my repeated attempts to find the lump ( trust me, I'm trying... A lot
. ) neither I nor the doctor were able to feel anything, so follow up imaging is going to happen soon. This is really the best news we could have asked for!The down side. I swear doctors don't tell you all of the chemo side effects because they are worried that many patients would elect to skip them.
One of the most disappointing ones is the effect chemo has on a woman's hormonal balance. Chemo kills any eggs in development in the ovaries, and effectively puts a woman into instant menopause. It seems like an50/50 chance for a woman under 35 that the effect will be permanent. 35-40 it's about an 80% chance. 40+ it's most likely to be permanent. My wife describes it as aging 15 years in two weeks. Her skin is losing collagen, showing and getting new wrinkles every day. She gets frequent hot flashes" and they are greater than normal ones, as the hormone change happened so rapidly.. The changes "down there" that normally happen over 5 years.. Happened in two weeks, so they are severe. Apparently, 1 in 2 woman who undergo treatment for breast cancer will have permanent sexual dysfunction. There are ways to try to prevent this, but, they aren't 100%, and doctors usually skip over it. It seems like the only way to get the info is if you tell them you "want kids again".
I wish I had found an easy list of what to "really" expect... Not just the ACS list :/.
Oh well!
Thank you all for the support! It means a ton to all of us. For the frequent updates, again, http://kickitwithkeenan.com !
HRDiva
Well-Known Member
Thank you for the update. You are very strong.We live in Marlton (near cherry hill),
So far we've been having some pretty different experiences... At some point I plan on putting together "our findings" aka a list of what worked, what didn't work, and how we got there...
We have been receiving phenomenal amount of support, it has been simply amazing! MD Anderson has been amazing as well. My wife is not really the normal case, so they are paying a bit of extra attention to her. A recent example is the administration of Adriomycan. Typically it is given as a straight injection. My wife was having issues with altered taste and extreme smell sensitivity due to it ( not to mention the possibility of congestive heart failure etc). The Dr had read that mixing the infusion with saline eased some other known side effects, so they have it a shot ( much more time consuming, but they would backfill the line with saline and infuse. This time around several side effects that were normally treated with additional medicine were almost alleviated. It's been a wonderful change!
On the positive side, despite my repeated attempts to find the lump ( trust me, I'm trying... A lot
The down side. I swear doctors don't tell you all of the chemo side effects because they are worried that many patients would elect to skip them.
One of the most disappointing ones is the effect chemo has on a woman's hormonal balance. Chemo kills any eggs in development in the ovaries, and effectively puts a woman into instant menopause. It seems like an50/50 chance for a woman under 35 that the effect will be permanent. 35-40 it's about an 80% chance. 40+ it's most likely to be permanent. My wife describes it as aging 15 years in two weeks. Her skin is losing collagen, showing and getting new wrinkles every day. She gets frequent hot flashes" and they are greater than normal ones, as the hormone change happened so rapidly.. The changes "down there" that normally happen over 5 years.. Happened in two weeks, so they are severe. Apparently, 1 in 2 woman who undergo treatment for breast cancer will have permanent sexual dysfunction. There are ways to try to prevent this, but, they aren't 100%, and doctors usually skip over it. It seems like the only way to get the info is if you tell them you "want kids again".
I wish I had found an easy list of what to "really" expect... Not just the ACS list :/.
Oh well!
Thank you all for the support! It means a ton to all of us. For the frequent updates, again, http://kickitwithkeenan.com !
Can you please PM me your wife's name and your address? I'd like to send you something.
Sorry to hear about this tough break thrown at your family. Fortunately, it seems like your wife is in excellent hands with all the support she is receiving. I had to deal with stage IV colon cancer (in remission 2+ years now) and I can imagine how grateful your wife must be to have you and so many others walking with her every step. That is how it was for me. My wife and friends rallied with me the whole way. It was pure gold. Oddly, I felt kind of lucky to get cancer because it brings all gifts you have going for you (family, friends, health, countless other little things) into high relief. Without such a major threat in my life, it is very easy to take such things for granted. My guess is, to some extent, your wife feels the same. I can't understate how important it was for me.
So, kudos to you for being there for her. There is nothing more important...
One other thing. You seem like you are highly informed about the in's and out's of cancer, so you may already know this. I encourage your wife to eat as healthy as she possibly can. My doctor suggested that I "eat whatever you can, milk shakes, pie, steak, etc." while on chemo to keep my weight up. Wasting was a big concern. I did exactly that. With each chemo treatment I became progressively sicker. It took longer and longer to recover. By the last treatment, I was really beat down. Then, my PET showed a liver met. So, that is when I threw that advice out the door. I switched to a plant based diet, started accupuncture, started supplements, and got rid of sugar, most meat and dairy. After a liver resection, I started chemo again with the new diet. The first two or three rounds were progressively crappier. Then, I started feeling a little better each round. I recovered faster each time (instead of a week to feel pretty good it was 4 days). By the end of chemo treatments, I actually felt alright. Each day out of chemo I felt noticeably better. It was hugely encouraging. The moral of the story to me was that chemo saps nutrients from your body. I needed to to whatever I could to replenish my body. It worked. I still stick to the diet to this day.
Whether it helps or not, I wanted to add my two-cents. I hope things turn out great for your wife and family. My bet is they will. Good luck!
So, kudos to you for being there for her. There is nothing more important...
One other thing. You seem like you are highly informed about the in's and out's of cancer, so you may already know this. I encourage your wife to eat as healthy as she possibly can. My doctor suggested that I "eat whatever you can, milk shakes, pie, steak, etc." while on chemo to keep my weight up. Wasting was a big concern. I did exactly that. With each chemo treatment I became progressively sicker. It took longer and longer to recover. By the last treatment, I was really beat down. Then, my PET showed a liver met. So, that is when I threw that advice out the door. I switched to a plant based diet, started accupuncture, started supplements, and got rid of sugar, most meat and dairy. After a liver resection, I started chemo again with the new diet. The first two or three rounds were progressively crappier. Then, I started feeling a little better each round. I recovered faster each time (instead of a week to feel pretty good it was 4 days). By the end of chemo treatments, I actually felt alright. Each day out of chemo I felt noticeably better. It was hugely encouraging. The moral of the story to me was that chemo saps nutrients from your body. I needed to to whatever I could to replenish my body. It worked. I still stick to the diet to this day.
Whether it helps or not, I wanted to add my two-cents. I hope things turn out great for your wife and family. My bet is they will. Good luck!