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Re: My Husband, My Life, My Love, My Family, My Cancer
@elainetherese Part of the problem with this decision is that there is no "end" date or a scheduled number of infusions. We would be on Chemo until the end or until we just can't handle it anymore anyways.
Re: CT and Lung Nodules
Sandy, My inhaler is a corticosteroid not for asthma but for radiation induced pulmonary fibrosis. It is prescribed to stop the horrible cough caused by nerves exposed to air by the reticular remodeling of the interstitium. There's also the chance that it might prevent the fibrosis from advancing. Two different clinical trials were proposed (China and Mexico) but never ran due to lack of enrollment, not surprising since RIPF is so rare. The top two lobes of my right lung are shot; I'm hoping the current consolidation throughout the lung isn't a progression. Unfortunately this ILD gives me a 58% chance of getting lung cancer so my nodules are monitored.
Currently my inhaler is covered by part D but Anthem and three other insurance companies have pulled out of the state for next year and none of the seven plans left have it on the formulary. My pulmo will request an exemption but is also proactive. When I was hospitalized for several days at the end of July I ended up with inhalers for three months even though my other meds were given to me pill by pill. I really feel sorry for the many people on Advantage plans who will be kicked out of nursing homes if they can't find another plan to take them. Since NH is a state with an older population leaving is how health insurance companies can control their costs.
maggie15
Re: My Husband, My Life, My Love, My Family, My Cancer
Intolight- I am so sorry. I am only on treatment #2, so I am not where you are. I pray for your scans next week.
I had 2 doses of chemo at the beginning, when we thought it was Stage 2. That was 8 years ago. I am 8 years older and 8 years wiser, and 8 years more tired. Back then I was just diagnosed with breast cancer. I went thru the mastectomy and started chemo kind of in a state of shock- no cancer in our family until me. I remember feeling sick and dizzy- memory of bending down to put food in my cat's bowl and feeling wobbly.
But I don't know if I could do it now.
I have scans Nov 21st. Never know when the progression will come.
Re: My Husband, My Life, My Love, My Family, My Cancer
@candy-678 You are not bad. This is your life. I have similar thoughts. I am 9 1/2 years on oral treatments and am on my fifth oral med. I am about out of options. I have never been on IV chemo having been dxd stage IV de novo. I am 72 years old, on oxygen 24/7 and am tired. I have four beautiful grandchildren that I would love to see grow up, but I am tired of being sick and not being able to travel and enjoy them. If I could continue on my current treatment I would, but my tumor markers have started rising again. I have a scan next week. If the scans show progression I fear chemo is my only option. I don't want to spend my last year sicker than I am now just to buy a few months. I don't know whether I have the fight left in me either. My daughter asked "what would chemo buy you?" It is a good question and one I am wrestling with.
Re: My Husband, My Life, My Love, My Family, My Cancer
I just need to get my thoughts down on paper (you know what I mean/computer, not paper haha).
I am reading this fictional book. One of the characters, not the main character or the main storyline, is dealing with breast cancer. They don't say what stage, but you can tell it is not Stage 4. She has had a mastectomy and going to have 5 treatments of chemo. But it describes how she is doing with the chemo. Tells about how her "body is on fire" and "every bone and muscle in her body was on fire", and how she is so weak and vomiting that her family is helping her sit up to drink and eat toast. "Through a cloud of pain and dizziness", it says. "Increased sensitivity to her skin", it says. Then it said the nurse told her the 3rd treatment would be when it hits so bad. That her family is providing her comfort and encouragement. And she voices she doesn't know if she can handle it.
Then I think, I don't want to go thru that. I don't know if I can go thru that. We know that with Stage 4 they do oral treatment until they HAVE to go to "chemo". And I know I have more oral options when I do have progression, before going to the "big guns". But after dealing with this for 8 years now, I don't know if I have the fight left in me to deal with the "big guns".
Of course, I don't know what I will do until that day comes, but I don't know how far I am willing to go in this fight. I don't know how much fight I have left in me. I don't know if I am willing to go thru all that, if how they described it is accurate.
Does that make me bad? Do any of you think about this?
Re: Stomach pain post Diep flap
I'm so sorry you both are experiencing this. I am 5 years out and have the weaknesses-- cramping (sometimes severe itching) whenever I use my stomach IF I can at all. I'm so defeated trying to do sit ups (can't) push ups (burning too tight) I'm doing pilates and I just got the ability to use my lower half for some moves-- but it seems like I had a TRAM instead of a DIEP cause my muscle strength is gone. I'm using the top part of my stomach for everything and it's super uncomfortable.
Re: Stomach pain post Diep flap
I have this problem, sex, sneezing, working out all cause severe muscle spasms. I was given muscle relaxers but this is definitely not the solution was hoping for. I’d love any help. I’m almost 2 years post diep flap. Healthy and active. I’m desperate.
gwest31
Re: Stomach pain post Diep flap
I also had DIEP in 2021 and have the exact spasms - lower left. They can be incredibly painful and using my stomach muscles triggers them. Now I also have occasional pressure around my belly button. If I could go back in time it's doubtful I'd choose DIEP again.
Re: recurrence with pleural effusion
I am new to this group. Was diagnosed with Stage IV metastatic breast cancer of the lung this summer. I started taking Femara (letrozole) on September 18. My oncologist has suggested adding Kisqali (ribociclib) to my treatment, and I am concerned about the side effects. As I have shared with my oncologist, my priority is quality of life as opposed to longevity—although of course I want to live as long as I can! What she told me about average longevity of continuing Femara alone is 12-15 months; adding Kisqali increases average longevity to 60 months. I've seen other "averages" elsewhere. So my question to the forum is, does anyone have experience with these treatments and their side effects (I've already seen some comments about this; thank you) that they think would help me in my decision of whether to add Kisqali?
Re: My Husband, My Life, My Love, My Family, My Cancer
@shanagirl - Thanks for what you know about Guillian-Barre Syndrome. It's all pretty new to me. I'd heard of it, but hadn't heard about any actual experiences. I'm not sure anymore that that is my problem, because as you pointed out, it looks like most who get it wind up in the hospital for a good month. I've got pins and needles down my legs and it all crept up, like they say, but I have not experienced anything that is so bad as to keep me from walking. I guess breathing can also be pretty much cut off, until things improve. I'm back to thinking it could be the faslodex/low estrogen, the weather, ergonomics, or don't want to say it: cancer progression in my spine. I had some bad digestive issues with all of this too (something they note for Guillain-Barre Syndrome), but they seem to be improving, knock on wood. Shana, I can't believe what a trooper you are, and how much you've been through with so many health crises over the years. You just amaze me in that regard, as you have fought and handled all of it. Kudos to you!