Best Of
Re: Can we have a forum for "older" people with bc?
cindyny,
I use an empty old wooden spool of thread. Works like a charm! 🙂
teka
Re: CT and Lung Nodules
Hi @orknitter, I'm sorry you were got by rads. The treatment for early stage RIPF (radiation induced pulmonary fibrosis) is a course of steroids. Your MO or RO can probably manage it at the early stage. If things get worse instead of remaining stable you should get a referral to an ILD (interstitial lung disease) pulmonologist.
RIPF usually shows up 6 - 12 months after finishing radiation. If treated it usually remains stable after two years. Sometimes other lung issues can cause it to progress. The healing process goes rogue and lung tissue is scarred because of a TGF-B1 (transforming growth factor beta 1) dysfunction.
I ended up at my PCP with a horrible dry cough, extreme anemia and fatigue five months after finishing rads. I was treated with several different antibiotics and iron. The consolidation that showed up on x-rays was thought to be pneumonia but continued to get worse. As time went on I also had shortness of breath and low O2 when moving, a low grade fever and weight loss. An NP finally ordered a chest CT since she thought it might be lung cancer. The radiologist at my small rural hospital described the scarring pattern and lung damage but didn't know what it was so I used the radiopaedia website to figure it out. I sent a copy of the CT to my RO at a big city hospital who got me a stat appointment with an ILD specialist.
I was started on oral steroids and oxygen. After five months I was able to ditch the O2 and go on a steroid inhaler. The fibrosis did get worse with a bout of covid a couple of years ago. I was hospitalized with flu at the new year so I won't know how my lungs are dong until my next pulmonary function tests and chest CT. So far only my right lung is affected. I have to mask and be careful of where I go to prevent respiratory infections.
It sounds like your RIPF was caught early. I hope everything goes well.
maggie15
Re: A place to talk death and dying issues
For what it's worth, I have decided to simply relax and live peacefully day to day. I am not going to get flustered about Christmas or any other holiday. I sat back and let my family run Thanksgiving and it was lovely. I couldn't join them for long and could hardly eat a bite, but the table looked gorgeous and the food could have graced the cover of any magazine. I was so prould of what my husband and grown kids accomplished without my help. They will be just fine without me.
I simply am too tired nowadays. The least effort exhausts me, even checking in here occassionally. Resting leaves me happy and content. Holidays, shouldn't be all about decorations, food and presents - much fun as those are, they should be about our relationships with each other.
Dying is a lot of work. I hadn't understood that before. Managing medications, figuring out what works and what doesn't, deciding what needs to be done differently each day, plus seeing nurses and constantly answering questions from them and from my family is surprisingly tiring. I've lost 25 pounds and am quite skinny. My clothes hang off of me. That doesn't bother me, but it does upset my family as it makes my fading away so evident and my approaching death very real.
I have no idea how long I still have and my hospice nurses say they don't either, other than I have begun declining. I have been told that each person is different and that there is no way to know if I am near the point that I will start actively declining, or not. So, I am going to do my best to rest, nap and enjoy what I can each day. That is what is important to me, not fussing over holiday details. I will leave that to the living. Now is my time to be selfish and take care of myself. That way I can do my best to take care of my loved ones emotionally.
Hortense
Re: Bone Mets Thread
Norah, you could ask your doctor about mirtazipine. It’s an antidepressant used to stimulate appetite. I took it once for depression and could have eaten every pizza in Chicago. The animal shelter where I volunteered used it for cats that weren’t eating.
wren44
Re: Penn SURMOUNT & ABBY clinical trials
There is also the PALOVY clinical trial (NCT04841148) that looks for DTCs in bone marrow and uses avelumab or hydroxychloroquinine. I looked into both but was not eligible since I have ILD.
maggie15
Re: Apparently I Am "Just Diagnosed." :(
Dizzydodo sorry to hear the Tamoxifen is impacting you in this way. Please get to your MO and have a frank discussion about options. Perhaps you can go on a low dose (5 mg) and see how that works rather than take nothing at all. This medication can be extremely dehydrating which might account for some of your issues. Try adding a small gatorade daily into your increased (ha) water intake to counter some of the effects.
rah2464
Re: Can we have a forum for "older" people with bc?
The essence of optimism is that it takes no account of the present, but it is a source of inspiration, of vitality and hope where others have resigned; it enables a man to hold his head high, to claim the future for himself and not to abandon it to his enemy.
betrayal
