@Terry Coywin Sure sorry to hear you don't have a support system on your end. That was the weak link in my cancer recovery, but maybe what made me stronger realizing it was all up to me to chose between being a victim or a survivor. I changed my mind to become the attacker and wage war on cancer, a war that will continue until I die. I hope your oncologist is an optimist. Mine is and that sure gave and gives me optimism. All, of you, out there battling cancer have my verbal support for either the removal or remission of your cancer.
I'm sorry you are stressed and anxious, TC. In some ways, that damn MyChart is not a good thing. I have poured over test results on my portal and it didn't do my mental state any favors. I know that you have a medical background, so seeing some of those results must be upsetting to you and I hate that. Remember that cancer treatment has improved tremendously in the past several years, so please don't give up hope. You have plenty of support right here, my friend. Hugs.
I do realize that, Beth. Yes you are right, there are more things on there that we did not discuss and I was not aware were there until I accessed MyChart. Many of those pertain to other systems in my body which is why. Of course a few are related to my advanced age. That cannot be denied. But others are new to me. I'll broach it with her tomorrow. Keep the faith.
I thought I'd post about the chemo drugs I'm taking, as well as the ones I'm dreading to come. Currently I'm on Taxol, which has been extremely tolerable for me though some people suffer dreadfully while taking it. After the 12-week Taxol I'll move on to the big guns Adriamycin and Cytotoxan (A/C), which I freely admit terrifies me. From Health Day... Paclitaxel (Taxol) is an effective drug used for treating some cases of breast cancer and ovarian cancer, but it can damage nerves over time, leaving some people with decreased sensation in their hands and feet. The anticancer compound in this drug was first discovered in the bark of Pacific yew trees. (My note: because many women on the breast cancer forum reported that icing their hands and feet during the Taxol infusion has helped them avoid peripheral neuropathy, I do this each week during the treatment. So far I have had no indication of any nerve damage in my extremities.) These two are the AC combo that patients refer to as the "Red Devil" due to severe side effects (mouth and throat sores, severe gastro problems, "chemo brain", debilitating nausea, peripheral neuropathy... just a real fun time.) Doxorubicin (Adriamycin) is one of the most powerful chemotherapy drugs ever invented. It can kill cancer cells at every point in their life cycle, and it's used to treat a wide variety of cancers. Unfortunately, the drug can also damage heart cells, so a patient can't take it indefinitely. Because of the damage they can bring to the heart, physicians often avoid giving them to elderly patients. Cyclophosphamide (Cytotoxan) is a drug that can treat many different cancers. Like many other chemotherapy drugs, it scrambles the DNA of cancer cells. Because it damages healthy DNA too, it can also cause long-term injury to the bone marrow, which, in a few rare cases, can lead to a new case of leukemia (cancer of certain white blood cells). So while these are the big guns when it comes to beating back cancer, unfortunately they carry risks for creating new problems such as long-term damage to the heart, lungs, kidneys, or reproductive organs, permanent nerve damage, injury to bone marrow, even causing other cancers. I just want to know when "they" are going to stop trying to invent new tortures for cancer patients and finally come up with a damn CURE.
Thanks for the information. I wish you were conveying it from a different set of circumstances (as I'm sure you do.) That's interesting about icing the hands & feet. I wonder if the benefit is due to decreasing temperature or to constricting vessels/blood flow. I stopped giving to the American Cancer Society's "Search for the Cure" when I found out that they use contributions (to some extent) to lobby Congress for anti-smoking and other behavioral legislation. That's not exactly what I thought they were gonna do. I used to give quite a bit, having had cancer hit close to home several times. Perhaps genetic research will yield some progress.
You are exactly right about the cold constricting the blood vessels. It keeps the invasion of the chemo to a minimum in the hands and feet. I bought some "icing socks" from Amazon that have gel-packs that I freeze and carry in an insulated lunchbox. I use a regular ice bag for my hands that the nurses fill with ice for me, and I suck on ice chips to keep my tongue and mouth from getting sores. Good thing they have those heated blankets!! And OMG, the people on the BC forums get hostile about all the "pink ribbon" campaigns. They are sick of "walking for the cure," when such a small percentage of the donations actually go toward research.
I'm so sorry for the horrors that the treatment brings. I was blind to all of this, all of you are strong ladies I know you will all succeed and get better. Stay positive and fight, Tony
@Beth Gallagher Will they do any scans after Taxol to see how effective it was? The fact that it comes from the Pacific Yew makes me appreciate it the most of all chemos. I have yew wood that came from dead trees that died because their bark was stripped for making chemo. One of my former neighbors used Taxol and it did enough good that they went ahead and did the double mastectomy and she showed cancer-free for 20 years so they discontinued the yearly scans and then cervical cancer hit and they recommended the more severe chemo and she refused and died in a couple of years. Another neighbor had all the nastiest chemos and finally went in remission but suffered heart enlargement. He goes in weekly for heart treatment and finally last year he turned 70 so they took him off the heart transplant list. He walks his dog every day in shorts even when it is cold. He says he doesn't feel the cold on his legs at all. The chemo also caused knee problems and he had both knees replaced. He amazes me that he is alive, walks daily, still drives, and goes on long trips. Ask him about cancer and chemo and he says no big deal. His cancer was first treated 30 years ago. Cancer is an ugly business any way you look at it. I won't give anything to any cancer society. The only place I donate is direct to St. Jude's hospital and children's cancer hospitals I know to be creditable. I don't think anyone will ever find a cure for cancer as it is a natural thing and part of living on earth as are other organisms. There are too many types to find a cure. No one has a cure for the common cold, so no reason to believe a cure exists for all cancers. The best is prevention and early detection. I get angry at all the profiteers that profit from other's misfortunes without doing anything. I don't begrudge doctors and nurses, but the drug companies and racketeer societies taking in a lot of money under false pretenses, doesn't sit well with me. When they asked me in the grocery stores if I would like to donate to a cancer society, I asked them if they would like to donate directly to a cancer patient.
Hi, Beth, Terry, just checking in to see how you are. When I had my chemo, in 2004 it never occurred to me to look up the drugs invading me. I was in such shock over the whole mess that I suppose I didn't want to know. I blocked out the experience, but did have a major meltdown of tears during a particular session--oh, I remember now, I badgered the oncologist to tell me what my chances were and he, cornered as he was by mighty me, said "you have a 30% chance of living five years", meaning a 70% chance I wouldn't. It was hard, it was very hard. On the way home, when the medical van was stopped by a red light, I jumped out and ran the mile to my home. Letting off steam, I guess. Just wanted to run away from the whole situation, but couldn't. Everywhere I turned IT was still there. I don't remember many bad effects from my chemo. I did lose hair, on my body, not my head. Didn't have to shave legs or underarms for years afterwards. I liked that part. I'm watching you Beth, so you better behave! Not! Like you better when you don't!
Yes, I have an ultrasound scheduled for the end of this month, which is why my oncologist doesn't recommend me having the Covid vaccine. It can cause swollen lymph nodes and he doesn't want any false positives... and neither do I!! So as that approaches I will be nervous again. The BC forum refers to it as "scanxiety." I thought some might find it interesting that Taxol was derived from the Pacific Yew. One of the few "natural" derivatives for cancer treatment. So far I am tolerating the Taxol very well; I haven't had any significant lingering side effects. After I cranked up my water intake I haven't had the muscle cramps, thank goodness. I don't know what I believe about a possible cure; seems to me that cancer is the ultimate cash cow for the medical profession. I hate to think that way, but I see the "assembly line of cancer" going on around me each time I visit the facility.
Hey Lu. So nice to hear from you. I can identify with your "cancer experience;" it works on the mind like nothing else. I suppose coming face-to-face with my own mortality at last was a shock I wasn't ready for. I have purposely avoided any life-expectancy or metastasis/recurrence statistics because they are definitely poor for IBC and I just don't want my mind to dwell on that. I'm sure that the chemo you had was different from the breast cancer "cocktail". Each type carries its own set of unpleasant side effects and many people never lose their hair when treated for other types of cancer. My hair is thinning significantly but I'm not bald yet! (Of course, when I begin the AC treatment all bets are off.) Girl, you know very well that I am never going to behave. Being a cranky old broad is my thing and I excel at it. Take care, Lu, and thanks for checking in.
OK, all, just got back from the oncologist. I will start radiation treatments right after Easter. I am to be given the strongest they have to knock out these nodes as fast as possible, so she's doing both lungs at once. 5 treatments given every other day and that's it. Next, I must have an ultrasound of the thyroid. Sooner than later. She is confident that all will be just fine. So, I am greatly relieved to say the least. She is one of the top cancer doctors in my state. Even better. Keep up the good work. How are you now Lu? And I would guess at this time cancer free. At least, I hope so. Bless you all for pulling for me and keeping my spirits up. I guess I don't know how lucky I am.
Hey TC. I'm so happy to hear you sounding more encouraged! Also glad that your treatment plan is in place; somehow that gives a bit of relief to the anxiety of it all. I'm sure you'll do great with the radiation. Hopefully the ultrasound of your thyroid will be scheduled soon and that will be behind you, too! Thanks for the update, and you'd better believe that we are all "pulling for you!"
Well now, Beth Gallagher, you better continue on the path you're on as well. Then we'll both be happy. I am so glad to see there are other cancer survivors on here. Most, if not all are younger than I am so I have very much to be thankful for.