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Mar 16, 2023 07:56PM mara51506 wrote:

MC, I am still in your pocket with regard to becoming stage 4. It is scary but can also be very treatable as well. Drugs given while on Stage 4 are not as strong as when you started out. I will keep sending healing thoughts your way and once you start Xeloda, visit that thread since they have lots of good info about skin care if needed or if people have SE. There will be all the appointments but as much as possible, keep up normal routines. Your still living with cancer, don't let that thought change. Living with it like any other disease, go day by day as well. Let yourself feel angry or cry as well, that helps. Treatments are so much better as I said so will send you healing thoughts and make sure the hospital has a social worker to help as well.

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Mar 17, 2023 07:39AM mara51506 wrote:

Although my MO said I was already Stage IV from the start, I did not find out til a year later and I was gutpunched. I can definitely empathize with MC. I am also an example that one can reach no evidence of disease or at least stable, no change and stay that way a long time as well but she is just at the beginning. It is not too much different than the reaction from an earlier stage dx. That is where I learned keeping up the regular life events etc help out. It is also easy to know that after 8 years. My biggest issues are keeping and maintaining balance and strength and learning to get up when I fall. Not the same as cancer.

As far as posting in the living room, feel free to post. You would definitely be warmly welcomed by everyone and it is not just Stage 4 welcome there, everyone is welcomed.

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Mar 20, 2023 10:21PM lw422 wrote:

Hey MC. I've been thinking about you and sending up prayers. Bless your sweet heart.

I hope everyone of the IBC group is doing well. I had my quarterly checkup visit with my "new" oncologist last Friday. He's OK but definitely not in the same league as my first doctor who left MDA. Since I'm not in active treatment I suppose it's no big deal. One thing does kind of puzzle me, though. He said everything looks good and I can see him in 6 months. I was a bit puzzled by this since the Standard of Care says "Physical exam at least every 3 months for 2 years, every 6 months for 3 years, then annually". My treatment ended in November 2021 so I have only had a year's worth of "every 3 months." Should I be concerned? Can anyone chime in about your checkup schedule?

I asked him about the 6 month schedule and he said I could return in 3 months "if I prefer." Well, of course I don't "prefer" it, but is it necessary? What do y'all think? I do have a followup with my RO in May, so at least someone will be seeing me sooner.

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Mar 22, 2023 10:55AM lw422 wrote:

Hey there MC. I agree, 6 months is probably fine; it's not like they are scanning or testing anything when I go. It's more of a physical exam and feeling for lumps or whatever. Since I'm TN there's no followup treatment, which is both a relief and scary at the same time. Now if I could just come to terms with this damn lymphedema.

I hope you are doing OK. I know the new Dx is still a fresh blow and I just hate it so much for you.

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Mar 26, 2023 10:15PM mara51506 wrote:

MC, hoping the nausea stays on the manageable side and that a prescription for an anti nausea has been given if you wished. I am still in your pocket send positive thoughts your way.

LW, I did not have physical exams per se. I see my MO every 3 months down from every 3 weeks before chemo initially and then when it was only Herceptin and Perjeta. We normally check bloodwork, weight etc. My scans are MRI to follow my brain which are four months apart although I will ask if they can move to 6 months and CT Scans are already six months apart. This is because at least for now, there has been no evidence of disease from the neck down for almost 8 years. I was scanned post radiation and chemo and nothing showed up from neck down. My brain MRI readings don't change significantly. Had to have followup rads a couple of years post whole brain radiation to treat surgical field again as a couple of spots showed up. These were expected due to craniotomy being unable to remove part of the tumour that was wrapped around a blood vessel when removing it.