Calling all TNs
Comments
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Talking of scans.. how frequently are mammograms recommended as a follow up test, post treatment?
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HausFrau, my tumor measured larger on MRI than in the ultrasound. I also had a mass on the opposite breast, they did a needle core biopsy and it turned out to be a ruptured cyst.
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Thanks Ally, Marshaand Meadow! My stomach is still a little tight this morning and it's sore. My IBS is flaring a bit also. Must just be from all the stress overload I've had before the appointment. I'm relieved but it just takes awhile for me to completely calm down. Ugh! Love all of you!!!
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Lou53...First, I want to say that this is my first time posting here on this forum. I was diagnosed TN in November, 2015. Scared me to death. I was just calming down when I got the news that my first CT scan showed an 8mm lesion on the head of my pancreas‼️ Of course, that sent me into another tailspin. My MO said not to worry...probably nothing. This is called an incidental finding and this is exactly why they don't do scans after treatment unless you have symptoms. Well, do I have to tell you that I'm now not thinking of TN, but obsessing about possible pancreatic cancer. Sometimes I think that what we DON'T know is what's best for us. Anyway, I'm hoping for the best for all of us.
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Meadow - you're so sweet, thanks for thinking of me here! The lower half of Michigan has had such a mild winter and this latest storm is supposed to miss us as well. We got 17 inches very early on and not much since.I know I'm the minority, but I actually love snow (as long as I don't have to drive in it lol), so I keep hoping for one more good snow before the season's over.
Luv - hugs! Be kind to yourself the next few days. Do you have anything for anxiety you could take?
Marsha - hugs to you too! Hope you feel better soon!
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Welcome, Cathytoo, but of course sorry you find yourself here. Have you gotten a final opinion about the pancreatic lesion?0
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Cathy, thanks for the reply. I guess there is nothing easy about this whole darn thing. Prayers that all turns out well for you. :
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bluedog...my MO never even told me about the lesion...it was my primary doctor. I've been doing a lot of research. It definitely is not connected to BC and is considered an incidental finding. It could have been there for a very long time. But, when I hear "pancreas" it scares me to death. From what I've read, the protocol is to redo the CT scan in six months. If no change...do again in six months. No change - forget about it. Easier said than done‼️ Sloan Kettering has a Pancreatic Cyst Survelience Program now because so many are found as incidental findings. Because mine is no small and on the head of the pancreas it would be major surgery to remove it. So, I'm just waiting until June for another CT scan. Since my MO never mentioned it to me, I'm assuming he didn't feel it was anything urgent. I keep telling myself that if I didn't do the CT scan for BC, I'd never know about it. Sometimes we're better off NOT knowing.
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Cathy - I'm so sorry. Some of us here are in the same boat with lung nodules. We just have to watch them and with no growth they'll eventually be ruled benign. But the wait isn't easy! I've had some other benign findings on scans that were scary as well. Like you said, sometimes it really is better not ever knowing about these things! Hugs!
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I've learned that any scan is going to show some weird stuff that we would never otherwise know about. My scans during the hospital stay showed 2mm and a large 2cm x 3cm nodule... that we'd never have seen except for a scan looking for something else. There was something on my liver as well that no one even mentioned after reading the report. I think it's just one of those things. Once we know about it, of course, we worry simply because of our cancer diagnosis. It's the catch-22 of why scans are awesome AND crappy, and a reason why doctors don't want to do them unless there's a specific purpose behind it. It causes more anxiety than it helps.
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Cathytoo welcome but sorry you had to find us. Remember this is only my opinion and your decision is what counts, but I would not be waiting for six months to see if there is any change in the pancreatic nodule of 8mm. I would be insisting on a specialist appointment a.s.a.p. It's ok for your MO to say don't worry, probably nothing, but he doesn't know that and I would be getting that checked out pronto for my own peace of mind.
LUV glad all was well so now go and see those wonderful Dobermans and forget scans, appointments and cancer for a while. You deserve it after all that stress.
BanR I have a yearly mammogram and ultrasound on my remaining breast. So far, so good.
CarolinaAmy I had to stop at 7 Taxol treatments because of neuropathy and it still hasn't resolved completely but is better than it was. This seems to be common with Taxol.
HausfrauMi Mike is correct they won't get a true reading of the size of a tumour until after surgery so easier said than done I know but try not to worry until all results are in.
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Hello everyone, I am new to this thread. I was diagnosed with IBC stage IV on 12/17/15. I had had an MRI to the brain, full body PET scan, and CT scan to the chest, abdomen and pelvis. The PET scan revealed 2, 1cm nodules to my lungs and I had a lung biopsy done which determined the nodules to be malignant; given those results on 01/08 and started chemo on 01/11/16. I am TN and on Taxol each weekx12. So far this is a duable TX plan and I've had minimal SE's. I feel like this TX plan is working (crossing my fingers). Hugs to all of you ❤
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Geeper, welcome but so sorry about your diagnosis. Cancer sucks. Glad you've had minimal SEs with the taxol. I tolerated it pretty well, too. Hug!
Cathytoo, glad that these cysts are common enough that yours may well be nothing, but how horrible to have to worry about it constantly. Ugh, yes, better not to know.0 -
@Amy - I did not do my last two Taxol/Carboplatin treatments. My MO (along with me and my DH) decided that I was "too beat up" and that any benefit from the doses would be offset by the damage, especially the neuropathy. I finished 10 of 12 treatments and got the impression that he was shooting for 80% of the original treatment target. At the time, I was very stressed about it, but heard from many long time survivors who had cut it short. So I think it is more common than we hear about.
Now, two months out, I am very glad for the decision. Obviously if I have a recurrence in the future, it will give me something to second guess. But I believe that cutting the chemo short gave me the best balance between combatting the cancer and saving my nerve endings for immediate quality of life. My neuropathy is getting better and I am hopeful that it will fade to a manageable level in the next several months
Best of luck with your decision.
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Geeper and Cathytoo, welcome! Geeper and I are aquainted through her IBC thread, and I am so glad she is here with the TN sisters (and bros) !
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Hugs ((((Geeper))))! I only had 11/12 taxol due to low blood counts (although I know I am not a great example because the follow on chemo failed - but I feel that taxol did work well, and I think I may end up back on it at some point).
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welcome geeper and cathytoo. Sorry you find yourselves here. I hope you will find the TN board supportive. I know I do. The gals here are really great.
Luvmydobies hugs to you.
Peabrain I feel like you about reoccurrence. I had reduced doses on 2/4 of my DD taxols. I worry was it enough? But I had bladder neuropathy and was scared it would be permanent. Thankfully it resolved after chemo. Scary to think the trade off risk but I was glad I didn't do full doses.
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I am so far behind in reading and responding!
Happy to read Ally and Luv's updates!
Welcome to the newbies. You will see, this board is the BEST at helping us get through ANYTHING!
Marsha, - sorry you have the flu! It can really do you in for a couple weeks.
I have had flu shot every year , even while on chemo, I think. Cocker, Meadow, Al, Shari, Arlene, and all here, - hugs and BE WELL wishes.
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Thank you everyone! Hard to copy all the names when using the iPad but hubby is busy on the laptop doing taxes. Since we lived in Germany part of last year his company has Deloitte prepare them and everything has to be submitted to them by the end of Feb! Last year our return was 90 pages long US, NC and German returns. We thought it would be good to throw in a house sale and purchase plus Corp relocation for 2015! Maybe we will reach 100 pages! I'm looking forward to next year when we only live in 1 place except we will have the huge medical deduction.
I'm sad to see new people keep joining our group
I hate that we are all here but it feels good to know there are sounding boards and compadresBig meeting MDC tomorrow and port placement scheduled for next Wednesday
I'd be lying if I said I wasn't nervous. Should not have read those online stories about people taking the "Red Devil" chemo!
Is it normally 4 AC (every two weeks) then 12 taxol weekly for most people? Or 8 AC? Was trying to estimate when I would finish this summer and now I can't remember what the MO said. Other than 5 1/2 months approx.
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Haus, I think it is 4 AC and 12 taxol. Where do you live in Germany? I lived there for a few years myself! And is NC North Carolina? I lived there TOO!
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Mamiya,
We were in Franfurt July 2013-July 2105. It was awesome! Kids can speak German with an almost native accent!
Left Hickory, NC (sold house there and then relocated to Michigan in August/Sept. My family is from the Hickory area so I grew up visiting. Hubby and I spent a few years in the Charlotte area and before we started dating I was in Raleigh. I've covered all the major areas but Greenville I think! Graduated college from Western Carolina. We lived in Pittsburgh for 5 years and it prob my favorite place! So far I like Michigan but it's so far when we need to visit friends and family
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That is the correct normal schedule for AC +T. 4 doses every two weeks, then weekly T. I had no issues during the A infusion. The nurse said some people get a sinus thing during the C. I could feel it, but it was slight. I plan on sucking on an altoid mint during the cytoxan this time to see if it helps.
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I had 4 AC but with three weeks in between to help with sickness. Then I was supposed to have 12 weekly Taxols but only managed 7.
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hausfrau act chemo is usually ac every other week which is dose dense, or every 3 weeks. There is a lifetime limit on the amount of adriamycin a person can have because of its possible cardiac effects.
Taxol can be every other week which is dose dense for 8 weeks or 4 doses or every week for 12 weeks.
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Hi everyone, I feel so out of touch with what everyone's up to. After 7 months chemo, double mastectomy with immediate diep and ovary and fallopian removal, I'm now well on my way to recovery and now back at work. I remember thinking during chemo that I really didn't feel that bad and that I was let off easily with side effects. Now it's coming up to 4 months post chemo and 2 months post op and I'm feeling so much better and I realise that I did feel a bit crap. It was not nearly as bad as I'd imagined, or I'd read, but I just felt like a diluted version of myself. It's amazing what our bodies and minds can cope with when pushed.
I've been catching up on a few posts and quite a few people have been asking about scans. I had a couple of breast ultrasounds during chemo to check progress (my tumours couldn't be felt) but that's it. The only scans that I've had through this whole process is a bone scan when I had recurring bone pain, along with an abdominal CAT scan prior to check the blood vessels for the DIEP. No scans planned unless checking symptoms. No bloods either.
Luv and Allydp - I'm so glad your scans went well. Onward and upward
HausFrauMi - the standard here in oz seems to be 4 X AC and 12 X weekly taxol. My Ac's were three weeks apart but my friends were 2 weeks apart. Btw - we're still waiting for the photo of the rocking hair style!!
Al - fairy godfather maybe, as you always seem to come to the rescue with such sage advice for many of us
Welcome to all the newcomers and much love to everyone else on this great thread
C words - camaraderie surely!
Love Cass x
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gotta figure out how to load a picture!!! I'm too dependent on iPhone and iPads and the Book of Face easy uploading. Haven't done it "old school" in a very long tim
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On Friday the hubs and i are headed to hawaii for a week, adult only trip. We do these trips every 2 years, last time it was St Martin. Not looking forward to flight.
We also decided we are moving to Charleston. We had the house on market, then i was dx. 3 years clear so we're going to do it. Don't want to just sit and wait fir the other shoe to drop. At lot of stars have to align but I'm hopeful. Need my job to let me work remote...that's 60/40 on it happening. But im sick of my job so if they say no ok. Puttng house on market in April, with hippies to close in June. Im tempted to push for a scan, a little worried to leave my support system. I don't want to regret not moving to Charleston so lets do it!!!
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Haus, don't let the AC stories scare you! Is AC fun? Not at all, but many of us had minimal side effects with it. I was definitely tired and run down but it's doable. Thursday I would have the AC, Friday i would go for my nuelasta shot, Saturday and Sunday I would bum around the house and lay on the couch and watch tv. By Monday it wasn't much of an issue to be up and out of the house. I did work through treatment just to keep my mind off everything!
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Haus, I agree that AC isn't fun. I did 4 AC, dose dense (every two weeks) followed by 4 paclitaxel ("T") dose dense (every two weeks), with Neulasta one day after each round. I had pretty bad side effects, but if you keep your medical team up to date on any side effects, there are pretty good treatments to deal with them. I had lots of nausea, but there were meds that kept me from being dehydrated. I mostly stayed home during chemo, but I was immune suppressed and my job involves lots of dealing with people. My counts were never low enough to need a transfusion. I found that day 4 through 8 were the hardest, because the fatigue would kick in after the steroids from days 1-3 wore off. Everyone is different, and your medical team will want to help you manage any side effects you might have.0
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JenJen GO FOR IT!!! We moved up here and don't know anyone. Is it easy No but its doable. I moved during the middle of my 1st pregnancy and it wasn't that much of an issue at all. Don't waste time and go live your dream! I grew up outside of Charleston in Summerville. Feel free to ask if you have any questions or school help, medical...I have a lot of friends still in the area that are teachers, doctors and everything in between!
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