TRIPLE POSITIVE GROUP
Comments
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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
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hello everyone. So I had my revision surgery last Tuesday and port removal yaaaay!
I do have a question for those who have been on hormone therapy for over a year especially letrozole and lupron shot. Lately I feel my symptoms are getting worse, joint pain and my hands ache so bad and can barely use them minutes after waking up and I have been feeling depressed too. Which is very unlike me, I am naturally a hyper and happy person. I wasn't this down while talking care of my mum during her last days dying of stage 4 breast cancer while going through radiation myself but lately, I have been feeling really awful and it doesn't help that I do not have a partner ( I haven't been in a relationship for over 3 years now and I haven't had sex at all too)
I am only 39 (40 in August ) and I want to start dating again but I don't feel alive in my head or in my genitals.
I am seeing my MO on Thursday, I want to know if it is possible to switch to tamoxifen instead and stop the lupron injections too because I don't feel like I am having the best quality of life right now.
Too young to live like this....
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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))
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Thank you Elaine, I have taken some notes from your reply and added to what will be discussed with my MO on Thursday.
I have been on letrozole for 11 months but looks like the bone pain and emotional / psychological side effect is getting worse now
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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
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Thanks Vicky, I will definitely make some calls and see a psychiatrist soon. I don't like how I'm feeling.
I want to ask, being on Aromasin do you also get ovarian suppressants like Elaine? Or you take it alone and still have your periods?
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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
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coachvicky - is psychiatrist usually covered in insurance during cancer treatment?
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Ingerp:
My nose runs like a leaky tap the day after my herceptin/perjeta infusions. I don't get a warning either.
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Wheatscapes:
I fell asleep during at least one of my port placements but was awake during one as well. It wasn't a problem as they managed to numb me well and I couldn't feel anything.
Sounds like the guy who placed yours was inexperienced.
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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
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Neelie ... Our insurance covered all but the co-pay. I did have to get a referral thru my PCP
PrincessM ... you made my day! Thank you.
OK, Ladies, go do some fighting the BC and win today!
Vicky
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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.
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princess...my guess is the pain and depression is the lupron...I had terrible pain til I stopped the lupron shots...
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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.
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hapa, thank you very much!
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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
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So far, I have seen MO, not PA, every 6 months to monitor letrozole. After my mammogram this spring, they moved me to once a year mammongram followed by a visit to BS. I have never been given a survivorship plan. It was my understanding that was given when one is released back to primary. MO's PA has been readily available by phone. I had a vaginal infection last spring and they got me into a gyn very quickly. I wasn't real happy when she tested me first for STD's after I assured her we hadn't been sexually active for years (DH has heart condition) but got it cleared up. I feel as if there is very good communication between primary and MO and I try to stager my 6 month appointments with them.
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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.
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Hi everybody. I need to understand the scans. I’ve never had a pet scan and this makes me extremely nervous. What is your experience? Has anyone not had PET scans? Thank yo
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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.
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LilyCH: I saw my MO this past week. Will see her again in 3 months, not sure after that if it'll be every 3 months or every 6. Also saw my BS, I am on every 6 month visits w/her for 3 years. I had a mammo on the left (non-affected) side in April, will have one on the right (affected) side in September, then bilateral next April. Port removal is whenever I want, probably will get it done in October if all my testing in Sept. is good. BS said flush it at least every 6 weeks. It doesn't really bother me, I'd just rather it be gone.
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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
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I'm five years out, and I still see my oncologist every three months. (It's probably because I'm doing Zoladex + Aromasin.) I used to get mammos every six months, but last year I graduated to annual mammos (in September). I don't mind all the monitoring, but I recognize that it's unusual for someone who was diagnosed a while back.
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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!
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Hello everyone, so I saw my MO yesterday and he explained how they work differently (Letrozole & lupron VS Tamoxifen only) and he said according to the data available, Letrozole & lupron combo effectiveness is only 3% higher than that of Tamoxifen only and he also feels that the chemo regime I had most likely might have pushed me into menopause anyways but, he is fine with me stopping the letrozole and lupron shot for now. So starting from today, I won't be taking it anymore then give it 14 days before I start tamoxifen only. We want to see how I fair on that and if there is nodifference in how I feel then i will have to back to AL if not, I am done with letrozole and lupron for good. I don't mind taking my chances, I just want to have a better quality of life.
I have also been given some numbers to call for psychiatric and willl do so next week, I already feel better just by being told that I canstop lupron.
Lily, I see my BS every 6 months with US and MM alternately done on the non cancer side, no imaging for the cancer side.
I am a little fresh out of H&P but I have seen him twice in four weeks and will be seeing him again in 7 weeks ( blood work and echo always done each time)
He said I will be seeing him every 4 weeks when I start nerlynx, for the first 3 months then it will be every 3 months for the first 2 years with blood work done (CA 15-3, CBC W/DIFFERENTIAL, CMP, CA 27.29, Vit D, vit B12)
Something weird happened to my legs about 10 days ago (just before my surgery) after jogging for a few days. My legs hurt so bad I couldn't sleep so now he has given me a long list of blood work to do. Said something about checking for autoimmune disease like rheumatoid arthritis, lupus etc. Phew!
I'm just glad I'm getting rid of lupron and letrozole hoping tamoxifen treats me better.
Lovely weekend to everyone. Xoxo
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Hello again - I have completed my bone scan and CT scan of torso. Start Taxol July 9. Bone scan was completely clear; CT scan looked “good," liver clear and some “calcifications/scar tissue/wedontknowwhatthisisexactly" on my lungs. But I was instructed to not worry about it, that 80-90% of people have these findings on their CT scan and it's nothing except scar tissue from a previous pneumonia or bronchitis. Well, I didn't want to hear that because when they biopsied my breast, the mammogram nurse said “oh, it's probably just scar tissue from when you had that benign tumor removed. Try not to worry." So to me, scar tissue = cancer. I am keeping my fingers crossed that my MO returns to work next week so that I can get a definitive answer about these spots on my lungs.
Does anyone's oncologist kinda shine them on to help them not worry? I don't want guesses, I want definitives.
Hope everyone has a beautiful weekend. It's hot as a firecracker down here in Texas!
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Hi all,
I had my port removed finally - yay - it’s been about 10 days and I still have a small lump where the port was (it looks like my port only smaller) - I’m guessing it’s scar tissue but did any of you have this and did it get better? I will not be happy if it stays like this 😕 Grrrrr
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Wheatscapes.. I take RX Nortriptyline, it works on nerve pain and antidepressant. I was prescribe this through my pain management doc for my prexisting nerve pain from cervical and thoracic pinched nerves and spinal cord.
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hapa, Taco196, MACTAZ, Kat22, SpecialK, ElaineTherese, Princess_meg and all:
Thanks so much again for sharing your experiences regarding the post treatment schedule.
Sububs and Wheatscapes:
I would like to share my wife's scan experiences here, it really got a lot of emotions involved at least.
We used to mention to the BS, two MOs and RO a few times about if my wife needs a scan and they all said no. The BS even said it is simply waste of time and money. However, my wife's vision got worse during the TCHP and was not getting better a couple of months PFC. We were very concerned about that and during one of the visits for HP infusion we asked the MO about the scan again and she said if that is the really what you want for the peace of mind she could order that but she expected nothing will show up. She then ordered both "CT Chest/Abdomen/Pelvis W/Contrast" and "MRI Brain W/WO Contrast". The MRI Brain(which we were concerned most) did come up without anything. However, the CT Chest came out with "Right lower lobe pulmonary nodule measuring up to 1 cm, suspicious for metastasis given the known history of breast cancer. Recommend correlation with PET/CT or tissue sampling". We were so freaked out by the result. The MO said since the radiologist did not necessarily know my wife's history, the impression they concluded is not accurate and the nodule is really small so we should not be too concerned about it. She also said we can wait for six months to get another scan and see if there is any changes. However, a couple of days later she contacted us again that, after they discussed in the tumor board meeting, it is better to know what the nodule is and if there is any activity from that nodule. So she ordered a PET/CT. We did and were hoping this would finally clear out everything. To our huge surprise, the PET/CT result said "Posterior right lung nodule with intermediate activity. This should be regarded with suspicion. It would be amenable to CT-guided biopsy." I spent quite some time to understand what the PET/CT report meant and what the SUV is. Although I did notice that the "intermediate activity" for the lung nodule corresponds to a SUV of 2.6, which is equal to what the liver's SUV (a reference value) and is not exceptionally high, It did not bring the peace of mind as we hoped!!! Instead, we both were extremely scared. To make things even worse, the BS (the chief of breast surgery in the Division of Surgical Oncology) said to us that, when the tumor board meeting discussed my wife's again, they were all surprised by my wife's PET/CT results and he believe it is 90% of chances of a lung mets. I was stunned like crazy when he said that. I asked how he concluded that and he said based on the radiologist's report and demo. Then I pointed to him that the SUV for the lung nodule is not super high, would that need to be taken into considerations as well and the chance of a lung mets can be lower? He seemed to be a little surprised by that and said if that is the case, he would change the chance to 50%, which is still not small to us at all. Anyway, the MO said she is not compelled to have my wife to do the biopsy but the only way to make sure what the nodule really is to do it and she ordered that again. A few days later, the biopsy result said "negative for carcinoma". What a relief!!! The biopsy also said the nodule was caused by an infection. My wife then saw an infectious decease Dr for that, she is taking medications now. A fully recovery is expected in a couple of months
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