TRIPLE POSITIVE GROUP
Comments
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Juli, Thanks for the advise!
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whywhy,
thanks for posting your experience with the surgery, I will be having mine in a month and what you are saying is music to my ears. I have a question for you: how long after the day of the surgery can you start working out?
I swim a few times a week and run (ok, jog) once a week; I thought running once a week was enough of a weighted workout (compared with swimming where you are in a weight-less environment) to have strong bones. I am shocked now reading about an actual vest with weights! So you put on a vest with weights and then do what? Run? That sounds hard!
I am about to schedule my bone density scan, I am curious to learn the results.
Good weekend everyone
LaughingGull
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LaughingGull: I was told today at surgery follow up that I can resume full workout in another week. Had my surgery done last Wednesday. But I started walking a few days ago. I think I'll walk with a weighted vest on. Running with it would be too hard.
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Stressed out waiting for surgery. Decided to go with second opinion doc but have to wait to get on her schedule. Lumpectomy first followed by radiation and chemo and targeted meds. Any insights are appreciated
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keepmovin - the sequence of events will likely be lumpectomy, a short wait for healing - and within the month start chemo and targeted therapy. For a stage 1 patient that would likely be Taxol and Herceptin. When done with the chemo portion and a short recovery time, but still receiving Herceptin, you would start radiation. Either after rads, or concurrently depending on your doc, you would start anti-hormonal therapy. There are lots of us on this thread who have been down this road so if you have specific questions ask away. Want you to know that you can do this! It is scary, but we are here to help.
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Keepmoving - If you are over 60, ask about brachytherapy. Mine was started 8 days after surgery. Basically the radiation is internal rather than external and uses the surgical cavity. Twice a day but only for week. I was done with rads before the lab results for HER2 came in. I had a little breakthrough during chemo but I'm a big fan of it.
This journey is less anxiety producing once you have a plan in place and as Inger points out, have some benchmarks penciled in on your calendar. Stay close and keep asking questions. The ladies on these boards all have experiences to share.
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Thanks. I appreciate the insights and support
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I just got a call from a nurse letting me know that they have scheduled a CT of my abdomen because I have high liver enzymes. Of course, I am terrified and was wondering if anyone else has any experience with this? I had a full body ct scan and bone scan before I started chemo and they were both clear. I've finished AC and I have 5 taxols left. Could it be possible to have mets so quickly and while on treatment?
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lg10, I think you will find this link on elevated liver enzymes very helpful.
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I also have high liver enzymes atm but was told that was a side effect of chemotherapy. I don't know how high yours are. I'd be surprised if you progressed while on chemo, that's almost unheard of. I think they are just showing an abundance of caution here.
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lg - make sure you're not using any pain meds - such as Tylenol - that present any additional challenge to your liver if your function tests currently indicate higher numbers. I agree that this is likely due to the chemo drugs themselves - after all, the liver's function is to clear toxins, but glad you are having this checked.
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Thanks, everyone. I will be so nervous until I find out the results, but I am trying to stay as positive as I can. I feel like nurses I've never met with shouldn't be the ones calling in these situations. I didn't really get any details about my levels, etc. What a rollercoaster.
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High enzymes probably from chemo.
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lg10, my alt and ast steadily increased and peaked one month after chemo ended. Hopefully your results are just normal chemo side effects.
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keepmovin... Glad you are going for a second opinion. I think it can bring peace of mind and you may find the second opinion Medical Team is more suited to you.
Best Wishes,
Vicky
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Are we supposed to have occasional pet scans, colonoscopies more often than every 5 years, or any tests other than annual mammograms after treatment is completed? What is recommended for b/c survivors to keep an eye out for mets?
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blownaway - the level of surveillance is dependent on each individual oncologist and their philosophy, their practice protocols, and where you fall on the spectrum of the disease. Some docs do tumor markers and blood tests, periodic scans, and some don’t. If you’ve had a lumpectomy I have seen alternating mammo and MRI, but not everyone does that. The organizations responsible for advising on this don’t really endorse regular monitoring in the absence of symptoms for early stage patients. This goes for colonoscopies - more often than 5 years if you have a diagnostic need, otherwise no.
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I have just had tomorrow’s TCH (#5 of 6) postponed because of low (51) platelets. This is the second time this has happened. I am worried that these postponements will make my treatments less effective. Has this happened to anyone else
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Jstarling, that happened one time to me and my oncologist said that it happens and not to worry. I was told that it was much too dangerous to have a treatment on top of such low platelets. It all eventually evened out and I was able to resume my treatments.
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This is depressing. Not only did they postpone chemo until next week but have suspended Herceptin because of last week’s MUGA test results. Do I have a chance to go back to Herceptin? How do they decide? I have a doctor visit the week after chemo (next Tuesday if the platelets rebound).
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I'm not sure of the answer to that Jstarling. There was a lady who had to postpone H (took a small break) and then resumed. I'm not sure what happened after she resumed....I think she was able to tolerate it the second go round. Perhaps Specialk can help with this answer.
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Hey ladies--question for those who are/have been on Herceptin only following Taxol. I know SEs tend to be minimal, and that you don't get any pre-meds. I'm actually looking to book a weekend away shortly after I finish the T. In that three-week cycle for the H, is there a time you felt better/worse? Is the first couple of days <potentially> rough, like with chemo? Do you think it'd be smarter to look to travel right after an H infusion? Wait until right before one? Doesn't matter??
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Ingerp. Are you saying you are only having Herceptin now? If so, when I did the H only, I was fine. I did at one point have flu like symptoms the third day out BUT it only lasted one day. I personally found the H quite easy. I know Hapb had some issues but I breezed through it.
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moodyblues--not yet. I have six more Taxols but I do like to plan things. :-) I've heard about the flu-like symptoms, but you think like a week past infusion would be okay? So sweet spot maybe a week after up to the next infusion? (FWIW--I'm looking at special offers at WDW!)
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Jstarling - I think if the heart recovers they usually restart the herceptin and continue to monitor it. If not, then they don't. Hopefully your LVEF will go back up but I've heard it takes a while. As for having the chemo delayed, if you read the monthly chemo threads, a lot of posters had delays of a week or two due to blood counts so I don't think it's abnormal.
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Jstarling, I had my 5th chemo TCH postponed because of low platelets. It just happens to some people and at that time I didn't know enough to be concerned about the postponement affecting the efficacy of treatment. They might have given me herceptin that time but I can't remember...it was 9 years ago!
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jstarling - for your situation and concern about treatment delay and efficacy, it is important to remember that you are receiving adjuvant chemo and targeted therapy. Your known cancer has been removed and you are not relying on systemic treatment to eradicate a tumor, it is being given as an insurance policy. You had a small grade tumor and were node negative - those things work in your favor. A delay is unlikely to be a problem, and is more common than you might think. For the MUGA result and suspension of Herceptin, they are looking for a rebound back to a normal LVEF range before resuming.
Ingerp - I had no issues with H only infusions that would have made a difference in scheduling anything.
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Thanks, SpecialK—good to know.
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Ingerp
I will have my three Herceptin + Perjeta infusion tomorrow and in the two prior ones I didn't notice any side effects on any day. Nothing at all.
LaughingGull
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Same here- no side effects from Herceptin and Perjeta except for the "herceptin drip," that makes your nose run. No big deal.
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