Just diagnosed with ILC

Trvler

There are typically two chemo regimes that are used. Either AC+T or Taxotere (I think it is combined with something else Cytol maybe?). Have you visited the chemo boards? You really should spend some time. Yes, that time frame is normal. Mine took 5.5 months. I was on AC+T which is what I am guessing you will be. 4 AC's (every two weeks) and 12 weeks of Taxol. There is a whole thread of weekly Taxol you might want to read or visit. If you are on this regiment, I fully believe weekly Taxol is better. Studies showed the SE's were less severe and there was no difference in outcomes. You might think you want to get it over by doing it every two weeks but some of the side effects (as an example neuropathy) can become permanent which is not good.

With Taxotere, there is a chance you will not get your hair back. It is small but there are people on here who have had and there is a class action suit going on for patients who were not told the risk of it. You should know about it. If your doctor says Taxotere, you might ask why? I never really understood who got which regiment and why.

Where did they put your port?

Mojojennijo

thanks for the info! He wanted to use the jugular from the right cause he said it was a nice straight shot down. So it's in my chest and Into myneck on the right side.

I'm having some weird head rush feelings and dizziness but I think I have some decent swelling maybe pressing on some nerves. It's pretty sore. I didn't sleep at all last night. I have to work tomorrow so I'm hoping it feels better in the morning. I let my employer know I can't work with combative residents or lift people so I'm hoping they keep this in mind.

I will update Wednesday when I get my scan results back and find out what meds and what regimen they are doing. I just want to get going and have all the testing done. Lol the waiting for results game is getting old

Trvler

I just asked you where your port was because mine was put in my arm. They put most people's in their chest. But I had symptoms pretty early on (heart skipping beats, winded going upstairs) and it turned out I had a blood clot from the port in my heart. Just pay attention to your body and if you have any scary symptoms, insist that the doctor pay attention. My MO tried to tell me I was dehydrated but I knew that wasn't true. She told me to wait and when I insisted she sent me to a cardiologist.

Mojojennijo

oh gosh that's terrible! Yesterday I had a lot of flutters with the winded feeling but today I so far just feel sore. I will for sure pay close attention to my body! Thank you!

Mojojennijo

I had the bone scan Ct and echo Tuesday and thought we were finally done and could get started treating this. But there was a spot on my lung (I think it's a granuloma cause I was told about it during a heat X-ray a few months ago when I was sick) and then there was something (I'm not sure what it is) by my spinal cord on my low back. My oncologist said they are just something he would watch and not really consider but at the tumor board meeting the radiologist insisted I have a pet scan. And there were a few nodes that showed so I also need a ultrasound and biopsy (if needed) of those. I again need these by Wednesday and then we can start treatment. Oncologist wasn't a at all worried about any of it. So that's encouraging. Also my bone scan looked great and so did my echo

I'm eager to start this treatment. All this waiting is kinda bumming me out. It's stressful.

beach2beach

Mojo,

Ugggh. Sorry you have to keep going through all these tests. You just want to start on the treatment route. It's good that all the bases are being covered so you can get a tailored treatment for you, but I understand about just wanting to to get on the road to getting rid of it and moving on.

Glad the Onc isn't worried. Hopefully you can get the last of these tests done and results in for Weds.

Mojojennijo

they got my pet scan and lymph ultrasound scheduled for tomorrow. They aren't the sentinel lynph that I guess will be biopsied at surgery. But he said aortic or para aortic lymph. I did a terrible job listening after he said more scans. I think I just went on overload in my brain.

But soon I will be done with tests yay!! I'm very glad my oncologist isn't concerned though. That helps with the anxiety. And also glad the radiologist wants to be thorough!

beach2beach

Great. I hope it all comes back with good news. Unfortunately I know nothing about the lymph system besides Sentinel and taking nodes. I know no particulars. I can understand. The times I went to the Dr. without someone with me, I just nodded and I think each time I nodded whatever they said fell right out of my head. If you can have someone with you, great. If not, set your cell phone to record the conversation. You can then go back listen,. I did that with the Oncologist visit.

Mojojennijo

I had posted a response but it's not here. So I had a clear pet scan and us was normal. So I start dd ac bi weekly (x4),Wednesday. Then we mri and move on to herceptin and perjeta for about 4 months. Then I get surgery to remove the offending party (parties) and then radiation. That I didn't think I would need cause of mastectomy. But apparently in tumors over 5cm chest wall radiation is standard practice.

Now due to nerves I wish Wednesday would hurry up and get here! I'm only afraid cause I don't know how it's gonna be. Also the neulasta shot every treatment has me nervous too.

AgathaNYC

Dear Mojo -

Congratulations on the clear PET. I know what a relief that must have been.

You and are one a similar path with our ILC. I start my AC in ten days and really wish it could just be now.

All the best for your treatments. Please let us know how it's going!

beach2beach

Mojo,

So glad to hear the pet scan was clear. Good luck on Weds., I hope the treatments are easy on you.