My Husband, My Life, My Love, My Family, My Cancer
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Candy, I responded in Ibrance thread, but I wanted to add I told my doc yesterday about my siblings, and she was sorry but didn’t really help on the emotional side of things. Whenever I talk negatively in any way, she tries to poo-poo it. I’m all for being positive, I am for the most part, but when I’m not, it should not be discounted. They really try to get you to think we can live forever. I know unless you have cancer, they just don’tunderstand. They never will either.
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the only way they will understand is if it happens to them.
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Candy, Thanks for posting how it went. That sounds like stable, with such small changes and possible measurement discrepancies? I'm glad your MO is waiting and watching before making any changes. It does sound like you had a very long day. I hope over the next few days you can absorb everything and feel some relief.
Kitty and Mae, sending good thoughts to you both.
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KBL I agree with mel. Unless they've been there, they don't always get it. That's why WE"RE here for each other. We can rejoice, celebrate or cry as the occasion calls for. You'll never hear anyone here telling another sister (or brother) here to "Suck it up, buttercup!"
That's actually one of my favorite expressions. My sister and I laugh and use it with each other as do my husband and I.
Wishing all of you a peaceful, pain free day.
Holiday cheer and (((hugs)))
Carol
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Thanks guys. We truly understand. I just want to add/clarify that I am happy with the results. I don't know if my post came off as I was not happy or that I was gripping. I thank the Lord that I am still considered stable and can stay on the treatment I know-- I/L--for the 3 years I have been on it. I will continue to monitor my weight, nausea, GERD, etc and can mention to my PCP at my February appt. Maybe nothing associated with cancer.
I think I made a good move to the new MO/cancer center. They have allowed me the option of the 5/2 Ibrance dosing--- old MO said no when I asked. New center suggested the MRI in October that showed the 4 liver mets, when I thought I had just the1. And I asked previous MO about an MRI one time and she said no need for one. So, even so far, I have gained by moving to the new center. And when there is progression, they have access to clinical trials. My old center/MO office did not.
I just meant my current MO is not touchy feely. Not the kind to just lean back in her chair and say "So how ya doing" or discuss the SABCC conference results or possible lines of therapy in my future. She looks at the computer images of my scans, says her thoughts on the cancer, and her thoughts on not changing treatments at this time. And then appointment is over.
Again, I thank God I am stable 3 years into this. Especially when so many that post on BCO are having so many issues with their cancer.
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Candy, glad to here the word stable and that you are able to take the treatment you wish.
I missed a lot here.
Mae, I am sorry the biosimilar to Herceptin caused the lowered heart function when you have not had trouble on the actual drug. I can't understand why, if a particular drug is working for us, pharma has to switch us to another drug. Especially when it forces you to take another drug to fix your heart.
I must say, I had a really hard time kicking my butt out the door for a couple of groceries and a couple of cards from the dollarama next door. I feel pretty good now that I am home, but was really not interested in the walk at all. I debated the bus as well, but rejected that. I am going to get a small snack and then take the bus to pick up a takeout order from my burger place that I will order and take the bus home. Not in the mood for 2 hours walking. I don't mind the 25 minutes walking to and from bus stop to home.
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I also got some Walker's shortbread cookies on a whim when I was lined up to check out. Just had a few and they were delicious. Not as good as my mom's but pretty darn close. Glad I tried them.
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Candy, I never felt you were griping at all. It seems oncologists tend not to have a great bedside manner. I totally get it.
Well, I have a question that I’ll stick here because you are the ones I’m most comfortable with. It seems I’m the one that asks for tests most of the time. I’m getting to the point where I should be scared to ask for any more of them because each time I do, it turns up something.
Back in 2016 I had tumor markers. At that time they did the CA125, CA19-9, CA15-3, and CA27-29. They were all above normal, so he discounted them all. Why, I don’t know.
I’ve regularly had the CEA, CA27-29, and CA15-3 since the start of treatment. They’ve never come back down to normal, 27-29 is at 359, 15-3 is at 109. I am not NED. I have small tumors everywhere. I asked to have the CA125 again for the first time since 2016, when it was 80. Normal is 35. I got my result. It’s 1446. I don’t know what to say. Where do I go from here? I don’t discount my markers like some because they’re accurate for me. Can anyone here talk about that tumor marker with me? Have you had it, and was it ever that high? You can private message me if you’d rather.
If anyone knows a forum room I could discuss this in, that would be great. I have had a partial hysterectomy. I still have my cervix and ovaries. I can remove this post from here once I figure out where to go. I have a GYN appointment next week, and that’s the reason I asked for it.
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KBL, I hate that panicky feeling. Remember to take some deep breaths. CA-125 is mostly used to track treatment response for a known cancer, and not recommended for ovarian cancer screening because it can be elevated for other reasons. I believe it can be elevated when there is something (cancer or not cancer) going on in the pelvis. My onc said they can usually see a haze on the scans if ILC is in that area, but to look at the ovaries an abdominal ultrasound is better. I know your scans don’t always show things, but I would ask to have imaging. Maybe see if your gyn will order an ultrasound now so you could try to get results in time for your appointment? And of course re-check the tumor marker regularly, I suppose.
I just asked my onc today about checking CA-125 because I have had so much bloating lately. My PET and CT scans look ok for the abdomen, but to look at the ovaries she ordered a pelvic ultrasound. I know, we worry about primary ovarian cancer, ILC ovarian mets, ILC creeping around the pelvic organs...
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Hi, Shetland. Thank you. I’ve calmed down a bit. Here is the thing. Back a couple of CTs ago, they said they saw something in my omentum. They just kind of shrugged it off. My appointment with the GYN is next Tuesday, so I’ll ask then. I mainly wanted this so I can be sure there is nothing else going on. I’ve asked a few times for an abdominal MRI and they’ve said I didn’t need it. I’ve thought about paying for it myself. We shall see what they say now. I’m tired of having to do their job for them. They know I’m not the usual case and that you can’t see things on CT. I won’t worry for now. I have my grandson tomorrow. He always makes me feel better.
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KBL,
I'm sorry to hear this about your tumor markers.
I just wanted to put in a plug here for seeing a "specialty" gyn -- when I had mets to my cervix (found by my regular gynecologist presenting as a cyst), my MO shipped me out right quick to a gynecological oncologist. I don't know how many of them are around, but they are very experienced in primary cancers as well as mets. Just something to keep in mind.
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Hi, BevJen. Thank you so much. I don't know what I would do without you ladies. I'll private message you again. I know we've talked privately before.
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Ok, good. I’m sure KBL and Bev will discuss expert radiologist consultations as well!
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Thank you, again, Shetland. I’ll keep you posted as well.
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Yep, I’m a bit late ‘ cause lots of you chipped in which is lovely, but pain def sucks!
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I wanted to come back and tell everyone Merry Christmas. I’m going to take a few days off and be with family and forget about this disease, if only for a few days. You have played such a vital role for me. I will be thinking of you all, but I need a break. Hugs to everyone.
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Enjoy KBL, see you when you get back
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KBL~Been doing a little of this myself ... enjoy.
Ok I’m back. I woke up Sunday fine. Sunday night uh oh. Stomach churning , terrible. Chills and hot and cold spells , no body aches, no fever , no sore throat, slight headache, on and off and sooooo tired. I was convinced it was covid. Monday was horrible. I was so sick. I slept the entire day and my DH made me an appointment for today at 1100 for a covid test. They called for the screening and told me not to come in. They said without a fever or more symptoms I shouldn’t have it. They said keep an eye out. I woke up this morning feeling fine. Not 100% but way better. They said. There is a bug going around. If it was covid I wouldn’t feel better I’d feel worse. Fever would be there and I never had one , any time during the entire deal but ugh! I was ready to have it. I thought I had it , I felt so sick. Now like a snap I feel good. 25 hour bug phew ba bye.
Mae~ hope your pain subsides!!
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Mel, so glad you're feeling better! Hope you have a pleasant, restful holiday.
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Glad you are feeliing better Mel, take care.
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Mae, count me among your pocket friends too! Shaking beef and peanut M&M's!? It sounds like we are coming with you well stocked. LOL. I hope it went well. I am single and so I admire you who are balancing all that we do with spouses and families. I suppose I do too, in my own way. This has been immeasurably hard on my folks and my younger brother but I think it's not quite the same.
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Mel, oh no, sorry to hear you were feeling so lousy. Glad it was just a quick virus & you're better!
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Thanks ladies. I am feeling way better. I’m thankful because I was really concerned. But I’m rollling along now....just got back from errands. We are trying to hold onto our white Christmas. But it looks like rain is on the way. Washing it all away. That figures. Goes with this shitty year.
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Geez, what a day for my infusion. Takes almost 2 hours to get in, then the receptionist says the pharmacy wants bloodwork. I NEVER have bloodwork before Herceptin and 3 weeks ago when I saw MO, it was perfect. I asked them to phone my MO. Turns out I did not need the bloodwork as I said. Took that much longer. Then my chest port was not giving any blood return ugh, they tried a bigger needle in the chest, still nothing. I asked them to use my arm to get it started. Then they said they would have to give me a drug called TPA to get the blood return and clear any blockage. They said I would have to be moved to a different area. Well, I suggested that they get the TPA in my chest while the Herceptin was going through my arm since the TPA drug takes 30 mins to clear any blockage. They actually did it and thanked me for the good idea. I did not think it was much more than common sense. Let me tell you, I am glad I brought extra snacks I was there so long. I got two ginger ales for my trouble and the walk home was super fast with the sugar high.
All's well that ends well but it usually does not have this many hiccups along the way.
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Mara,
What a day for you!
I can sympathize, but to a much lesser extent. I had a CT today. Showed up early, was taken back, and because of contrast, they had to put in an IV lead. Told med tech that I had a lot of scarring in my main vein on inside elbow. Okay. Stick no. 1 -- in that area -- nope, didn't work. Stick no. 2, back of arm near wrist (ouch). Nope, didn't work. Finally, the med tech (thankfully) called the nurse over. She put a hot pad on my arm and left it there for a bit, and was able to find a vein and get the IV lead in. That was not a fun time at all, and I came out with3 different bandaged areas. And I didn't get any ginger ale -- just the yucky contrast stuff that I had to drink before my CT. So you were lucky!
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BevJen, we can definitely sympathize with each other. The nurses were nice and did not give me too much resistance about putting in the TPA and doing the arm. I was just surprised they did not think of it. The port worked perfectly after that which was good because I have a CT scan on Jan 11th. As far as the bloodwork before Herceptin, I will always make them phone my MO since I don't need it.
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Mara and BevJen-Sorry you both had such frustrating days. Always a little nerve wracking getting procedures done around the holidays-sometimes the A-Team is missing. Glad you both made it home safe and sound and can relax this evening.
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Thanks, Chicagoan,
I didn't even think of that. In fact, there are usually two nurses at the nurses station, and today there was only one. That's probably why. Such is life!
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And since my cancer clinic will be closed over Christmas and New Years, they were extra busy. Thankfully as I said earlier, the nurses were recceptive in helping out phoning the onc about the blood draw not being required and as well following my TPA being put through my port at the same time as the Herceptin so I did not have to walk home in the dark. I appreciated that. I ordered supper for delivery and it was good. The walk home was good as well.
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BevJen and Mara, Glad you both made it through your complicated days! Quick thinking on suggesting they multi -task, Mara. Bev, the several attempts are definitely not fun. I’m limited to one arm, not the best one of course, and they ended up using my hand for my last ct contrast. I hope your report is good.
Mel, I’m glad your feeling lousy didn’t last too long and you’re feeling good again
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