Phoenix Area and/or Mayo Clinic Patients

Hi Sadieo64! This is my 1st post. How do you add details to bottom? I added info to account. . .

I'm waiting for echo and port placement pre-auths and scheduling, then start chemo at Mayo. Had chemo class today. Mayo dx'd 12/17 but is out-of-network for only insurance plan (HMO) available to me in 2018. Chronic conditions; asthma, MCS, CVID, Fibro, CFS, migraines & few more make me higher risk patient. Tumor is large. Consulted a wonderful in-network surgeon, also, who encouraged me to continue with Mayo if at all possible because they are more experienced with complex patients!

Has been a marathon getting pre-auths for every M.D. and procedure!

How are you and how did chemo go? How about surgery or radiation?

Hi, I am not in the Phoenix area, but I am being treated at Mayo Clinic here in Jacksonville, FL. I feel very lucky to have access to this level of care where so much is coordinated for me and all of my doctors review my case together. I start neoadjuvant chemo on Monday.

Hi Nem7az,

I see you had a large tumor like me also, did you notice a lump before you were diagnosed? I had just begun to notice a little change in the shape of my breast, but I did not feel the lump until recently.

The Mayo portal really is the best, isn't it? I had my labs this morning and was already able to see my numbers. Unfortunately, it will not reveal the results of my PET/CT scan from this morning until after I see my MO tomorrow so I'm still on pins and needles waiting for that.

I'm sorry to hear that you have those other conditions to deal with along with this--any one of those conditions is tough enough on its own. Sounds like you are a brave woman in good spirits though!

I have my Chemo Education and Dignicap fitting tomorrow morning and then first chemo on Monday. My biggest fear right now is an allergic reaction to the chemo. I will be glad to get the first treatment over with and get rid of the fear of the unknown.

Nem7az--the first round went smoothly at first and I overdid trying to take care of the family and go to work. I got smacked down hard with SE's over the weekend that culminated in my picking up a cold and ending up in the ER with heart pain and palpitations. I got IV fluids and some more anti-nausea meds on Monday and I've been improving since.

Lesson learned about staying home and resting for more than just a couple of days after chemo.

How are you feeling today? I hope you are getting plenty of rest.

Hi Hapa! Go Team Mayo!

Welcome, Hapa!

Sidalee - Hope your 2nd after treatment was easier. Can't trust those first two days when you feel sort of normal! How's the Dignacap working?

Sadie064 - How are you doing?

I'm on day 9 of Round 4. Still have a some very thin hair with a WIDE part! Side effects have been a little different combination and timing after each treatment.

Take care of yourselves!

Thank you, Egads! Hope all is going well for you!

Hi Nem,

The second round went a little better than the first, but also a little tougher in some ways. Better managed with better meds I guess. Cold capping is going pretty well so far, I still look like I have hair even though it is much thinner than it was. The top is still covered so fingers crossed the shedding is mostly done!

My 3rd round is next week and then I will be halfway done with chemo...yay.

Nem7az - That's a great response! I hope your surgery goes well, definitely keep us updated!

I'm going in for TCHP #4 a week from tomorrow. I'm not looking forward to it. So far SEs have been somewhat manageable, but I'm noticing a bit of neuropathy in my fingertips now and had some pretty bad nausea on the last round. I'm starting to get fatigued as well, I'm interested to see my bloodwork next week; hg was 10.1 and hct was 30.1% at my last round. My lump has shrunk significantly so that keeps me going, otherwise it would be really tough to go back in there every three weeks. As it is, my blood pressure spikes by about 30-40 points every time I meet the onc nurse before chemo.

Nem7 - just checking in to see how you're doing! Hopefully the fatigue is subsiding now that you're off chemo. I hope your scans went as well as possible.

Sid - I hope your hair is hanging in there! I gave up and shaved after chemo #2, but I'm still cold capping anyway.

As for me, chemo #4 was this past Wednesday and I'm in the thick of SEs right now (got that bleh taste in my mouth, etc). My RBCs and hgb are holding steady, no real drop to speak of since chemo #2. I don't know why my HR keeps climbing, but I get my echo in a couple weeks so we will see what the damage is (none, I hope). I did manage to do some hiking yesterday with my husband - had to drive up to the Mogollon rim because it's just so flippin hot down here in the valley, but we walked around Woods Canyon Lake and it was nice and shady and (relatively) cool.