Best Of
Re: Zoom Meet-up for Those With MBC: Place to keep chatting
@illimae I’m so happy and was hoping to see this great news. 💕
For those not on the meeting today, Susan wrote me this past Wednesday and sadly had been diagnosed with leptomeningeal disease. I have not been able to reach her since Thursday of last week. She had told me they had given her two weeks, so I’m not sure what is happening. My heart hurts, once again. We had a beautiful rainstorm tonight, so I’m dedicating this rainbow to Susan.
kbl
Re: Lung Nodule Incidental Finding
Update - the nodule size estimated on PET to be closer to 1 cm, flat appearance, MINIMAL uptake and in a location most likely to be an intrapulmonary lymph node. My BC team feels it is most likely that or something else benign.
But scans always seem to lead to more scans! Some diffuse uptake showed in my vaginal area which they presumed was urine contamination. I did drink a ton of water prior and had to pee twice before procedure and again right afterwards. The report recommended a clinical followup so that is what happened yesterday despite just seeing an OB/GYN 6 weeks ago with normal screening test results. I have now been visually and manually inspected again. The gynecologist said my vagina has an A+. 🤣
A 1.4 cm thyroid nodule was found so off to an u/s for that. 🙄
Pulmonologist scheduled 3 months CT followup for lung nodule. She also ordered a urine test for lung fungus and a blood test to check for lung cancer. Those results are expected to be negative but of course I will exhale completely when the results are returned in a week or so.
I have now decided to forgo scans unless ABSOLUTELY necessary. My LDL numbers were high, but nothing else indicated a need for a cardiac scan. My score was a perfect 0 for arterial calcium blockage.
And the incidental lung nodule has resulted in a cascade of followups, more scans, appointments, tests, anxieties, worry, and medical PTSD.
In fact, I spent the 12th anniversary of my initial diagnosis at the pulmonologist.
I literally have had more appointments this week and in the future from this one incidental finding than I had during my initial cancer diagnosis journey.
I am grateful for my docs - my oncologist, who dismissed me 7 years ago, expedited my PET scan. My breast surgeon was able to preview the PET report and interpret it as being "NOT very worrisome" and "good news." All my docs and the radiologists who have read my scans are doing their due diligence and leaving no stone unturned.
And, if by some chance, the lung nodule turns out to be a very small primary lung cancer, well, good, it's been found and can be removed with very good projected survival rates when this small.
But I can't help but think that this all could have been avoided by my turning down a less-than-necessary scan!
rosamond
Re: Dealing with Lymphedema w/o surgery?
@pemala im so sorry to read of your continued suffering. I hope you can find some relief as well. My swelling was not severe, and the Velcro wrap, called a Circaide Recovery banadage worked well for the two months I needed it. I now wear a compression sleeve , and since my insurance covered it, I also use a pneumatic pump which is a massager and that keeps the swelling in check. But I did not experience pain. In your pockets with support ❤️. Wishing you free of future suffering.
@maggie15 i love how ingenious you are. Love how you figured out that the red light therapy was an option to try , and so glad that worked for your DH. I’m so sorry to read of all the radiation complications you have endured. I cannot imagine the stamina it has taken to move forward. And yet, here you are. Loving and caring and sharing. ❤️
Re: Dealing with Lymphedema w/o surgery?
My husband had an arm like yours when severe LE developed post surgery for a complicated elbow break. His super swollen arm just hung there like a useless appendage; he had no feeling in it. He couldn't even attempt the prescribed physical therapy. The surgeon and PT had no ideal what to do so I came up with possible veterinary solutions since I have some background there and propsed pulsed magnetic therapy, ultrasound and photobiomodulation (red light therapy.) Ultrasound is used on humans in ortho but the doctor nixed it since it would heat the metal hardware. A fellow in the group had seen red light therapy used in neurological units when he did his residency so we tried that. It actually worked well and he was able to start the 18 month process of getting the use of his arm back. The plug in wraps are expensive but you might be able to borrow one or find someone who provides treatment with them. The animal ones work just like those for humans. The other therapies might work for you since you don't have metal in your arm. The cause of your LE is different but that shot in the dark worked for him.
Your statment about SEs being worse than the cancer itself is so true. My cancer was only stage 2 and radiation injured my lungs, thyroid, esophagus, trachea, nerves and now possibly liver (biopsy pending.) The brachial plexopathy is slowly advancing in my right arm. I'm hoping I never get to the stage where it doesn't work at all. Maybe a nerve block would help your pain. I had one done for intercostal nerves since breathing was excruciating; it still helped when it wore off six weeks later. I hope you can get some relief.
maggie15
Re: Dealing with Lymphedema w/o surgery?
A quick update: Curiously, the arm pain from swelling and the swelling itself is creating the worst impact on my quality of life: My arm doesn't work = bandaging and putting on clothes is really difficult, as are a lot of things now; the opioids don't seem to numb the pain; people who see the swollen arm get really disturbed.
Who would have thought a side effect of cancer could be worse than the cancer itself? ;)
A smooth journey to all.
pemala
Re: I’m on hospice - anyone else?
As KBL noted, it is a personal decision and I think we all take different paths to arrive at that point. My trajectory was rather sudden. I spent 13 progression free years on very minimal tx when I was suddenly hit with massive progression, despite close monitoring. It was like a bomb went off in my spine and ribs (…fractures and hot spots too numerous to count). After that horrendous reaction to my half dose of chemo, I knew beyond a shadow of a doubt that I did not want to pursue further tx. The hallucinations were terrifying. I am, BTW, the queen of rare side effects in terms of most aspects of my tx. So whether I have 10 weeks or 10 months left, I have no intention of spending it fighting bizarre side effects. Because of so many fractures, my mobility is severely compromised.
PS: I will describe the hallucinations one day but suffice to say it involved the Kardashians, kidnapping, and Las Vegas. A true nightmare…
Re: Life does not end with a stage IV diagnosis (really!)
I could get in to making costumes. I love some of those garments. Just kinda glad i dont have to wear them!
I make quilts and enjoy using the 1800s reproduction prints. I've done none since winter. I' m usually in the garden all spring but this year 3/4way through chemo i started having pain on side and lower abdomen. I thought i had the answer when spine doc suggested shingles. But mri just showed a hemangioma on spine. Always something. Maybe wednesday well have a treatment plan for that.
gailmary
Re: My Husband, My Life, My Love, My Family, My Cancer
Mel - Just saying hello and sending some hugs. Thinking of you and wishing you and yours all the best!
Re: Vaginal Atrophy solution that is working for me!
My Mo ordered Estrace for me. I use it very sparingly, only about 5 times over the past year and a half. It works well and I’m sure I would have less symptoms using it regularly but it seems too scary. supposedly it doesn’t go systemically. Wondering about using this after finishing Tamoxifen, would that be riskier due to not taking an anti hormonal
veeder14
Re: My Husband, My Life, My Love, My Family, My Cancer
Did not sleep well, just dozed a bit. Have meeting with MO today, just routine bloodwork etc.
Laundry cycle done, vacuum out drain later. Figure out where to store machines, remove from tub and then contacting property manager. Moving machines will happen tomorrow. Without much sleep, would be too hard to hoist them up, better to wait til tomorrow. Get rid of the drain issue FINALLY instead of the incessant obsessing over it.
I decided to try chipotle beans. Put in dry rice, added a bit of water. Too much water but rice was fine, put in a strainer and added extra chipotle cream, was spicier but still tasted fine. Put the extra in a container. Next time, make the rice and then put into the mild chipotle fiesta beans.
Edited, Was going to order fast food as I was starving BUT decided to use a frozen pasta meal, put some beefless ground and cheese and used queso, sour cream and ranch. Very small amounts of the dressings of course and a sprinkle of salt.
MO said bloodwork was perfect and my Echo results are also very good so pleased about that news.
Hoping everyone had a good day and in pockets for all who need me. Late in posting.
