TRIPLE POSITIVE GROUP
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Great to hear from you! Really great news on you feeling happy. Wise move on the Cancer Therapist. Really, who new this was a specialty?
Separation / divorce is hard and you will be better on the other side.
All is well here. I have enjoyed sheltering at home. Got a lot of mini projects done. Love online shopping. A friend of ours owns a local wine shop. She delivers by the case, LOL. We moved my Brother into a Memory Care Facility about 7 minutes from us a week ago. As I have shared before, I'd take cancer over Alzheimer's any day. When I see Brother, I think my cancer was a cakewalk.
I did move my six month appointment with my Oncologist and Prolia injection out a month. First time I had ever not kept an appointment as scheduled. When I told my Primary Care I was expecting his disapproval and instead he emailed me that was glad I moved the appointment out.
Vicky
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jkeet - gabapentin is a medication for nerve pain, not sure why the pharmacist recommended it for the side effects you are currently experiencing. In all the time I have been here I have only seen it prescribed for neuropathic pain, and untenable nerve pain from surgery. It also has a scary list of side effects that would be enough to keep me from taking it. I would suggest a sleep aid, or I have also seen some use Ativan or Xanax - but it is important to note that these are potentially habit forming. Effexor is also frequently prescribed, but coming off of it requires careful management. If in your shoes, I would try some holistic methods first - melatonin, finding the right combo of sleep clothes, sheets/blankets, room temp, ambient light in the room. For anxiety it is harder to find non-drug means, but talk therapy, management of caffeine intake,mediation or yoga are places you can start. I have always had wicked hot flashes due to sudden surgical menopause. I still have them and that hyst/oooh was almost 20 years ago - but, I found that an anti-inflammatory diet helped tremendously.
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Hi,
Just wanted to give an update. PET SCAN/ Brain MRI and Ultrasound of the neck (where I can feel a lump) all came back with no suspicion of cancerous activity/cells. The lump on the neck is highly suspected to be due to Thyroid...also saw an ENT specialist today and he said that thyroid surgery can wait till after chemo is done. Once again this week CA 15-3 marker is increasing, we still do not know why but the plan is to continue with current chemo plan of pacs+herceptin, 3 more of the weekly cycle left.
I also asked for CEA, CA125,CA19.9...these are all within normal levels.
I am hoping that the chemo is creating havoc with the CA15-3 readings and will wait to see how it looks like 2-3 weeks after stopping paclitaxel
Vijiya
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Good to see the tests came back negative for cancer. 😁
Do they know what is going on with your thyroid? I know Chemo can cause hypothyroidism (which I actually had prior to starting Chemo) but, wasn't sure if it was something else.
Hope all goes well with you remaining doses, maybe Chemo is messing up your marker?
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Vijiya — great news for you. Best wishes for the next three infusions to go well.
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j
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thanks for the well wishes
Morrigan, I am not sure if it's the chemo that triggered the thyroid..I guess we will never know. Its 1.7cm in size. Actually its bigger than the lump I had removed in my breast. Will have to wait after chemo and radiation to remove it.
Still have no idea what's messing up the tumor markers..read that fasting might help. Going to try that next
Vijiya
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i asked my MO about all the blood work we talked about. He said my Kidney and Liver counts were spot on. I asked him about tumor markers and he said they won't look at those until I'm done with Chemo since Chemo can mess them up. He said he looks at CA 27/29. I forgot about CEA but, I'll try to remember to ask again once we get to that point.
Thanks for the information, no one ever brought any of this up. It's sad that you have to know the right questions to ask
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Vijiya - about 19 years ago I had a tumor on my thyroid. They found it when I found out I was pregnant with my daughter. It was the size of a quarter. I couldn’t do any radioactive dye test since I was pregnant so I was told to come back after my baby was born. we moved four weeks after she was born and I didn’t think anything more about it until she was 6 months old. By that time I couldn’t lay on one side and breathe every well. Went to see an endocrinologist and end up having a benign tumor the size of a baseball! They took the tumor out and most of that side of my thyroid. I never had to be on medication. I’m hoping yours is an easy extraction!
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Tuesday I went in for my yearly mammogram, Wednesday got the dreaded callback. Thursday I had an ultrasound and they redid right side mammogram. It shows an small area of concern about 2 cm below my previous lumpectomy site. Radiologist visited with me, recommended recheck in 6 months. He feels it probably isnt anything, but still need to followup. Just wondering, is 6 months too long for followup? Any other testing they could do? Waiting to hear from my oncologist. Going to be a long 6 months, trying to be positive, but still worried.
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i think a biopsy or MRI would be next.
I'm impressed you got a mammo. Places around here closed down in March quite a few of my friends had their routine Mammos canceled.
I hope this turns out to be nothing to worry about.
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Hi all! Thought you might be interested in this latest Research News story from Breastcancer.org:
Chemotherapy for Certain Small, Hormone-Receptor-Positive, HER2-Positive Breast Cancers Seems to Improve Survival
May 7, 2020
When looking at treatment outcomes for small, node-negative, hormone-receptor-positive, HER2-positive breast cancers, a study suggests that women diagnosed with cancers 8-10 mm in size had better survival when they were treated with chemotherapy after surgery, compared to women diagnosed with smaller cancers. Read more...0 -
I was wondering if someone could help with a question. I am scheduled for Chemo with Herceptin starting tomorrow. I just received a call from a nurse confirming my appointment starting tomorrow. According to someone else's post about a generic Herceptin, I asked if I was receiving true Herceptin or a biosimilar drug and I was told that I would be receiving Kanjinti instead of Herceptin. This was approved in June of 2019. The nurse told me that my insurance probably would not cover Herceptin. Does anyone know what this is and how effective it is? Should I do the treatment if I am not receiving Herceptin? Thanks for your help.
Paula
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i didn't even know they had a generic version. You can always Google or ask your MO on the stats for Herceptin vs Kanjinti.
I don't know what options you have if your Insurance won't cover Herceptin. I have to assume Kanjinti is better than nothing
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PJAL — here is a link to four experts presenting on Biosimilars.
I’m not a scientist or a doctor, I shared my personal experience of how badly I reacted to Kanjinti and not being informed I was being given a biosimilar. Please ask your medical professionals. Best wishes.
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j
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Hopefully Special K will check in here. She is up on everything. PJAL, I wonder if your onc's nurse might be too lazy to pursue this. JMO
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Cowgirl13, I called my insurance company and they do cover Herceptin. I sent an email to my MO, but she hasn’t responded. The oncology nurse has not responded either. I have a tutorial with her tomorrow morning and then I begin treatment. After all of the research I’ve done on Herceptin, I wasn’t expecting this. I think this whole biosimilar drug thing is fairly new to reduce the cost of the original drug and I’m uncomfortable receiving something that’s similar, but not exact.
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PJAL - I'm guessing that Herceptin has been on the market long enough that the original patent has run out, allowing other companies to produce the so-called "generics." It has been an issue/discussion about AI's since I've been at this site. Many have found that a doctor's prescription can over-ride the insurance company. Not a hassle you want at this point in your journey but may be worth it. I agree, SpecialK is the expert on all the studies.
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thanks Angie for sharing your experience...I am hoping to get this removed in 2 months time
Vijiya
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Just Just wanted to give an update on my ongoing scare with rising CA15-3. For the 1st time it is beginning to drop, it was 51 last week and had a big drop to 43...still far from the acceptable levels, nevertheless I am happy with the drop. The only change that I did in terms of my habits is that I started intermittent fasting 1 week ago. Not sure if that is helping
Vijiya
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So, the deal on Kanjinti and Herceptin is this - Kanjinti is not a generic version of Herceptin, rather it is a similar drug that is not made by the same process, and so is less expensive to produce. Genentech is the maker of Herceptin, and Kanjinti is made by Amgen. Since Herceptin was a gold mine for Genentech, other drug companies wanted a piece of that market and so they worked to develop biosimilars that they then had to prove to the FDA could provide the same effect that Herceptin does. Much like with generics, insurance companies like less expensive drugs, so some oncology practices are starting with biosimilars. I think for those who exhibit intolerance for Kanjinti a request from their oncologist for Herceptin will be honored, particularly since using biosimilars is relatively new. This happens with aromatase inhibitors as well, there are some who can't tolerate the generic formulations because of the additives and fillers that are different to each generic version, and when your oncologist writes your prescription for the brand name and no other, insurance will cover. This also happens with allergic reactions to taxanes and then insurance is asked if they will cover Abraxane, a more expensive taxane that does not use a solvent and so is better tolerated by some patients. Important to note that a number of the same side effects can occur with Herceptin and the biosimilars, but because they are formulated slightly differently, there may be some side effects that are unique to each drug. It is a very good idea for new patients to confirm which drugs they will be getting since there are now a variety of options, and important to note there are a number of biosimilars for Herceptin, Kanjinti is not the only one. I know there is a lot to take it right at the beginning, but it is your oncologist's responsibility to provide this information up front, and your right to know.
vijiya - glad to hear your marker is dropping. Hang in there!
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Thanks for the info SpecialK, I did not know that Herceptin was made using mice. Ugh, I hate that. Maybe it's best that I didn't know that during treatment. I have serious issues with the amount of animal testing that goes on in medical research, and I work for a medical device company. I wish there was a better way.
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I don't know about the efficacy of Herceptin vs. Kanjinti, but I know someone in my April 2020 group had a bad reaction to the biosimilar and was also not told that she was getting it. I asked because of that, and my MO uses actual Herceptin. Since I'm getting it for a year, I want it to be that one. If your insurance covers it, I would ask for the real deal, if you're more comfortable. And Kanjinti is made from hamsters, so you're getting rodents either way!
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Thank you for your posts and all of the information. I had my first treatment today and made my case and was able to get the real Herceptin, for which I am thankful.
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It has been quiet in here lately...
I had my annual DEXA and my lumbar spine is slightly less osteoporotic than it was at baseline. My hips have improved to the point where one is NORMAL. I don't know why things have improved but I'll take it.
I finish Nerlynx when I run out of pills, a little less than two weeks from now. In three months my MO wants to try stopping the zoladex to see if my ovaries are even still functioning. I would guess they are not since I did not suppress them during chemo. If I can get off the zoladex I am down to just anastrozole, at $6.99 for a 90 day supply. MO says I could maybe drop down to annual checkups as well. No word from my RO. I am due to travel to Houston to see him in a little more than two weeks. I'm not sure if that's going to happen or not. If I go, I can't go back to work for two weeks after flying home.
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PJAL - how are your Herceptin infusions going? I’ve forgotten if you’re weekly or every three weeks. I had my third real Herceptin yesterday, second combined with Taxol, and am thrilled by the lack of significant side effects. Such a difference to my body than the biosimilar Kanjinti.
I’ve asked the moderators to change their drop down menu in creating our treatment profile to include all the biosimilar and not limit us to simply choosing Herceptin. The bio similars and Herceptin are not FDAinterchangeable, so should be not grouped together as one. They’ve taken it under advisement and will get back to me with the decision. If you have time, could you also contact them to share your experience. Thanks.
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j
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ByHisGraceTwice- I am weekly and so far so good. Had my 3rd on Thursday. I had a rash after the first infusion. Not sure if it is chemo or herceptin induced. It’s resolving. Still present but not itchy or angry any longer. Other than that, no side effects that are so bothersome that I can’t deal with. I check to make sure I have herceptin each time. Thank you again.
Im glad to hear that you are not having any significant side effects. That’s great news!
Yes, I will reach out to the moderators and ask the same. I agree that all biosimilars should be added.
Keep me posted on treatments. Thinking about you.
Paula
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PJAL — thrilled you’re doing well.
I asked to do one Herceptin solo so I could distinguish Kanjinti and Herceptin reactions before adding Taxol. I didn’t get a rash, but did get what I think is a mild case of radiation recall. On the same place on my abdomen and lower back where the lumbar spine was radiated a small pancake sized circle of slightly rougher, tougher skin. Can’t see it, just feels different. Extra lotion doesn’t seem to resolve. Those spots probably Will never see the sun again, so I don’t know if they would tan more darkly. Weird.
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j
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After learning about biosimilars here, I checked and I'm getting Herceptin and Perjeta. However, I did find out that I was getting a biosimilar instead of Neulasta (Udenyca).
Of course I didn't pay attention until the final treatment so too late to do anything about it. It did make me wonder if that white coating on my tongue was related to Udenyca vs Neulasta.
Yay! 1.5 weeks out from Final Chemo Treatment. My surgery is scheduled for 6/19. Hoping for good pathology results. My SO didn't see the point in a follow up MRI since I opted for a BMX. So, I won't know how well treatment worked until we do the surgery in 3 weeks
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morrigan_2575 - good luck with your surgery! I'm halfway done with chemo - just finished Round 3 last week. Surgery will be sometime in August or September. Doing the BMX also. Anxious to hear how it goes with you.
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I had too had a "radiation break-through" after I started TH. It did resolve itself but the scaring there is worse than my surgical scars. And yes, it hurt and inched like crazy for a while and topicals weren't much help. Hang in there.
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