HERCEPTIN and/or PERJETA Threads
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This thread has been very quiet. I thought I would give a quick update. Had my 6th HP treatment today and had excellent labs and CA results. Pre-treated with Benadryl and Claritin to help with the Perjeta itch. It really helped when I had my last treatment on January 7th. So far, so good today. Last infusion I was wiped out for a week, but think I may also have had a touch of something going around. Not enough to feel super bad, but enough to feel yucky and tired. I'm feeling much better this time.
Hope all of you are doing well and enjoying the last few days of January!
Hugs, Pam 💗
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Dear Pam,
Very happy for you doing well. In modern medicine we trust!:) Hugs,
Saulius
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Hi all, I thought I would pop in and give an update - I did wind up volunteering for the FREE-HER study in Miami and after another negative Signatera and a clear CT scan I am on track to discontinue phesgo. I will stay on my anti-hormonals for now, but if I am still in remission when I reach the 10 year mark, I may reconsider.
The study is still recruiting in case anyone is interested, it can be found on clinicaltrials.gov if you search for FREE-HER.
Glad to see some familiar faces still doing well.
Best to all!
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@olma61 Great to hear you got in the FREE-HER trial! I am just starting HP (6 months so far), but do hope to be able to stop the treatment at some point. So glad there are people like you out there who are willing and able to participate in this trial. Do keep us updated. Best wishes for much success. Let us know how you feel physically once you are off HP for a while. Thanks.
Hugs, Pam 💗
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Hi Pam, yes I definitely will update everyone.
It’s great and a good sign that you’re having a pretty robust response to the H&P early on in treatment. Hope it continues for you long term. ♥️
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Dear Olma, it is so cool to be hearing from you. You are our Columbus, Magellan and Cook all together - true essence of human spirit. The words by W. Shedd would apply here very well: "The ship is safe in the harbor, but that's not what ships are for"! Hugs,
Saulius
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Thank you, Saulius! Yes I am happy to feel like I am contributing to what might be learned from this study. The genes and mutations of us volunteers are also going to be studied to see if there’s any way to predict who might be able to safely end MAB treatment or even just who can safely take breaks from medication, in addition to seeing how well Signatera helps predict this.
Exciting times!
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@olma61 Do you have any updates on the trial in which you are participating? It's sounds like lots of information is being gathered, so it may take some time. Just curious. Hope all is well with you!
Hugs, Pam 💗
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Hi Pam, the study runs for 36 months and they started recruiting the middle of last year. So, it will be a while before they can draw any conclusions. I’m doing fine so far, my last PHESGO shot was January 23, I am due for my next Signatera test this week! I’ll definitely share my results.
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Hope all is well with all of you on this lovely Monday. Well, I had my PET this morning and by the time we arrived home I was able to see the results in the patient portal. Not NED as I had hoped, but one nodal mass and one sclerotic sternal metastases are both stable and have gone down slightly. And, although some nodules were seen in the lungs at the beginning of all this, they were never biopsied (so don't know if they were even cancerous or just inflammation, etc.). Anyway, there is nothing seen in the lungs at all now! The only real area of concern is a new hypermetabolic lytic metastasis within the sternum. I immediately called my MO office and asked to speak with her. (My appointment with her isn't until next Tuesday.) While waiting for her, I called my RO (who I had 2 consultations with earlier in my diagnosis.) While waiting to hear back from him, my MO called and said that after looking the PET over, she suggests radiating that one spot and continuing with my HP protocol, which seems to be working for everything else. She is going to speak with my RO to see about getting things set up. So lucky to have such a responsive team!
Now more appointments and hopefully putting this to bed for a while.
Hugs, Pam 💗
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Dear livinglifenow, wow, I'd say your results is a winner, and this occasion requires celebration. Congratulations!:) Saulius
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@bsandra Saulius, thanks for the encouraging message! Best to you and your wife.
Hugs, Pam 💗
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Just an update on my latest Signatera results: Two months off Herceptin now and Signatera taken last week is still negative.
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@olma61 That is so exciting. Hope that trend continues!
Hugs, Pam 💗
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Dear Olma, wow, you give us so much hope! Hugs hugs hugs!:) Saulius
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Scan results this week = “no evidence of metastatic disease”
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@olma61 I am so thrilled for you! Wishing you many more clear scans!!
Hugs, Pam 💗
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Pam thanks so much! Hope you are holding up well during your rads treatment 💗
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Dear Olma, congratulations! We waited for this… how long is it now exactly since you stopped the treatment? Saulius
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Only
twoactually was 3 months at this point…study will be ongoing for 3 year.but in the past I had a six month and a four month break with no ill effects so I feel like my odds of getting through the whole 3 yrs are good.
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I just got a billing statement from my former cancer center….they price the PHESGO shot at $66K per shot…Medicare plus my supplement pays them about $8K each time. I never have to pay anything because the two insurances cover it, but I guess I can feel proud to do my part keeping Medicare solvent by finding out if this $8,000 every 3 weeks is really necessary or not!
Then there’s the every 3 weeks blood work which they bill another few hundred $$ for.
Plus the echocardiograms I had to have every 3 months or so….I haven’t looked up the billing for that but I’m sure its substantial (but probably costing less than the PHESGO shot)
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Dear Olma, did I understand it correctly that the cancer center charges 66000 USD per shot? Wow…
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Well…US healthcare is complicated.
$66K is like a “sticker price” that the clinics use for PHESGO, but Medicare (govt insurance for elderly and disabled people) and private insurance negotiate much lower rates that they will pay.
With Medicare, they cannot charge the patient anything over the “Medicare Approved Rate” which as I said is around $8K.
And then there are the contracts clinics have with private insurance companies, they are not going to pay or make the patient responsible for anything near $66K, although there are probably co-pays and deductibles which can vary depending on how good the insurance policy is.
But with Medicare you can still be responsible for 20% of the “Approved Rate” unless you carry extra insurance, which I do.
Like I said, very complicated.
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Another negative Signatera this month. Now I’ll be on an every 3 month testing/scanning schedule. 🎉
Best regards to everyone.
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Great news, @olma61 !
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Quarterly update on my progress without PHESGO or H/P - CT Scan end of July shows no evidence of active disease, Signatera results from early August = still negative.
I feel great and FREE with fewer medical appointments and no more camping out in the infusion center monthly-ish.
Currently working on my dental issues (haha maybe I'll have that all sorted before I leave this earth) and dermatology monitoring due to one bit of bad news. I had some moles removed and one was positive for Stage 1 melanoma. I had the melanoma surgically removed with clean margins and that will be the end of that, God-willing.
It was on my back, in the area of my radiation treatment. 😳
I never would have seen the odd looking mole had the study oncologist not spotted it after I had done my breast exam when I turned to grab my clothes outside of the curtain. Pure luck!
I've been joking that skin cancer Stage 1 is nothing compared to what I've had to go through with MBC although I do know melanoma can also spread and be deadly but I just continue to whistle through the graveyard and try to keep my sense of humor.
Peace and strength to all my MBC siblings.
🏋️♀️
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@olma61 Overall, great news and lucky catch of that pesky mole. Praying it is completely gone!
Glad you are feeling so great. The HP infusions tire me out for a few days. Sure would be nice to take a break some day! 😁Have a great weekend, everyone!
Hugs, Pam 💗
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Dear Olma, such great news!:) I mean… melanoma is no joke but if something could be removed with short surgery, then thanks god and let that chapter be closed. It is interesting though that something has appeared on the radiated place, hmm… is there something known about such risks or is this some coincidence? Many many hugs, Saulius
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Hi Saulius, great to hear from you. Yes, there does seem to be a connection There has found to be increased risk of melanoma in women who’ve had breast cancer generally but also increased risk for those who’ve undergone radiation therapy (and also a connection with the BRCA gene, which I don’t have).
And, I asked my dermatological surgeon, also mentioning my history of tanning some years ago and he said the radiation treatment was more likely to trigger the melanoma than the sun exposure!
Here’s a citation:
International Journal of Cancer:
2004 Sep 20;111(5):792 4. Association between female breast cancer and cutaneous melanoma. Goggins W, Gao W, Tsao H)
Results of this 2004 study indicated female breast cancer survivors were 16% more likely to develop cutaneous melanoma than women who have not had breast cancer. And female melanoma survivors had an 11% increased risk of being diagnosed with breast cancer as second cancers. More strikingly:
"Among young [breast cancer] patients, we observed a 46% elevated risk of a second [cutaneous melanoma]. Women who underwent radiation therapy exhibited a 42% increased risk for [cutaneous melanoma].”
The study also found that patients with a mutated BRCA2 gene, which increases risk for developing breast cancer, and those with a mutation on the melanoma susceptibility gene, CDKN2A, are both more likely to develop the other cancer compared to those without these gene mutations.
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