TRIPLE POSITIVE GROUP

And I am still not 100% normal. I also have allergies and still carry tissue everywhere. But not the constant drip anymore. At least I see progress. At points I thought this could be permanent.

Wheatscapes - seems to me that your surgeon should have been blaming the anasesaolgist (spell check isn't helping me here) rather than you! I'm glad I got my port as I'm not a particularly easy stick. Hang in there - we TP do have a long haul but herceptin has made a huge difference!

Wheatscapes...

Feel the fear and do it anyway! DH played Stephen Halpern music during my chemo.

Take a look at this information: https://www.stevenhalpern.com/

Cut your nails (hands and toes). Special did a nail paint of some sort so ask her about it.

I had great success with cold capping. Cut your hair short too. Get thermal gloves to handle the caps when in dry ice.

You got this. You are stronger than you realize...you just don't know it yet.

Ingerp ... It took several weeks for the nose running to stop. Then "gunk" came out as if my internal nose lining was starting new.

Vicky

Princess Meg,

I'm also doing Ovulation Suppression (Zoladex) and an Aromatase Inhibiter (Aromasin). I've been on this regimen for over four years. A few months in, I also felt very moody and depressed. I asked my MO for an anti-depressant, and she prescribed Celexa. That definitely lifted my mood. However, I have not suffered the joint pain you are describing, though that is a common side-effect. I do feel a little creaky when I get up, especially if I've been seated for awhile, but that's it.

Switching to Tamoxifen is definitely an option if you don't want to try a different AI or brand of Femara. Of course, there are side effects to Tamoxifen as well; hopefully, it would be gentler for you.

((Hugs))

PrincessMeg...

My follow on is different that yours. However, when the side effects were not what I wanted to endure, my MO switched me to Aromasin from Arimidex. I barely notice anything now except for left thumb pain and an occasional hot flash.

Search this site for a forum about follow on treatment.

Like your journey thus far ... you are in charge. Get what works for you.

As Elaine shares, if you need an anti depressant get it. I would recommend seeing a Psychiatrist to 100% ensure you get the correct medicine. I personally believe that the average MO is not qualified to neither diagnosis nor prescribe what you would need emotionally and take into account your sexual desires. I saw a Psychiatrist. He diagnosed PTSD not depression. My MO's Nurse Practitioner pushed anti depressants which would not have worked for me and what I experienced.

Best wishes. You got this girlfriend!

Vicky

PrincessM ...

Great decision! My GP said that the Psychiatrist / Patient relationship is the one medical relationship that must work. Find one you can click with.

I was post menopausal at diagnosis. After diagnosis I had a complete hysterectomy. I take Aromasin daily and Prolia injection every six months.

Vicky

Ingerp:

My nose runs like a leaky tap the day after my herceptin/perjeta infusions. I don't get a warning either.

Hi Vicky oh yeah I must click with whoever I will be talking to about my mental issues.

Pardon me thinking you are in your early 40s at most... lol. That's what your profile picture looks like. Beautiful picture by the way.

Okay I will see my MO today and discuss my options. Fingers crossed

Thank you all so much for previously replying me about keeping port or not.

After one (long) year, my wife is going to have the last HP infusion late next week. Finally!!! I understand we would not need to see the MO as often as before now, so during the last infusion, does the MO usually give a checklist (about follow-up appointments, how often the mammon or US or MRI need to be done)? are there any important questions we should ask?

Thanks again.

Lily, my cancer center gave me a survivorship plan after I completed herceptin. I met with a nurse who did this as her full time job. It was not all that helpful imo. I got a huge binder of crap to read that I have not looked at yet, plus some yoga and meditation DVDs. I will continue to get bloodwork as long as I'm on anti-hormonals, but this I learned from my MO not from the survivorship lady. You should ask your wife's MO what the plan is going forward, how often she'll get checkups, bloodwork, mammograms or scans, and if you'll be seeing the MO or a mid-level, and for how long. My cancer center releases people at the five year mark and then follow up is with your PCP unless there is a problem. Some MOs continue to see patients for the rest of their lives.

Hi Everyone,

had my 6 month PET scan today. Hope to have the results via email by Monday. I meet my oncologist on July 9th and we will see what if any steps need to be taken besides the Arimidex. I have been on it for 2 weeks and so far I have had fatigue, tingling in my fingertips, some slight bowel issues and very low energy.

I dont know what I would do without this community to talk to and read encouraging storys about. What a tremendous blessing.

AngelsGal57

My OC said he will do six month visits for the first first year, although I did see him every 3 weeks during chemo) and then once a year. I finished chemo in Dec and my last H&P Infusion is the 1st of August. (Happy days). My BS scheduled my Mamo 1 year from my initial scan that found the cancer but because of my reconstruction surgery they had to postpone it until November. My PCP said the BS will schedule mamo until she is comfortable no complications have arisen and then will release me to PCP, I believe that will happen after the mamo in Nov as long as it is clear. My OC said he will do at least annual reviews for the duration of the time I’m on meds, 5 years?, then release me to PCP. I will see him right before my last infusion and plan and verifying the timing.

It’s been a long journey, not done yet but close. I have another surgery scheduled for July 2nd for tweeks, my brain scan came up clean so no worries there, and have an appointment to take the port out early September. After that I will feel relieved, I just want to get back to a semi-normal life.

Suburbs,

I got a PET scan because my tumor was big (5 cm + a little satellite friend) and I was node positive from a fine needle biopsy. My MO just wanted to make sure my cancer was local. I got another PET scan after chemo to see whether or not I still had active cancer. I did not, which meant I ended up with a lumpectomy.

PET scans produce lots of false positives, so they can sometimes cause unnecessary worry. My left hip lit up on my PET scans, and my MO would have biopsied it....except that it couldn't be found on an MRI. So, she considered it to be a false positive.

Is there any particular reason for you to have a PET scan, Suburbs? If not, I wouldn't worry about it.

My post systemic treatment oncology schedule was to be seen every three months for the first year after the end of Herceptin, then every six months until I reached five years, then annually with no cutoff. I'm at nine years from diagnosis and still see my oncologist, not his PA or NP. I have also never had a year when I haven't seen him for at least one additional appointment due to a question or an issue, and he writes the prescription for my lymphedema garments. I have blood work done (CBC, CMP, CEA, CA27/29, and VitD) before each appointment. I saw my BS every six months for the first couple of years, then annually for a couple, now not at all - but he did consult after an abnormal PET at year six. I had a BMX, so no routine imaging. I see my PS annually. None of these docs are in communication with my primary care, who I only see for new routine problems, but I have recently discussed with my primary having a cardiac assessment by an oncologic cardiologist - I have a pre-existing murmur which she wanted checked, and I brought up that I have had no long term follow up post Herceptin - so that is pending.

Edited to add - I am right down the street from an NCI center, was not treated there for a variety of reasons, but am very familiar with their policies and have friends who were treated there. They do release breast cancer patients at the five year point to a survivorship program which is overseen by nursing staff, you no longer see a physician

I Had a pet scan after I completed my BMX and Chemo. I don't remembering it being uncomfortable. It was a mobile unit, and unknown to me there was another patient hidden behind a curtain a foot away from me and he sneezed and scared me to death!