TRIPLE POSITIVE GROUP
Comments
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Cowgirl13, just out of curiosity, you did not have targeted therapy ten years ago? thanks.
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If you are referring to Perjeta, no, I did not have it. It wasn't an option then.
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It seems like most triple positives get Perjeta with Herceptin. I’m only getting Herceptin. And I’m having some cardio effects.
I asked my MO about why I wasn’t on it yesterday. She said it was due to the size of my tumor. But I was at 1.9 cm with a second tumor at 8 mm and 2 seems to be the magic number.
She said the side effects of Perjeta include severe diarrhea so they limit its use to when they believe benefits ourweigh risks. She also assured me that she believes I will still be seeing her when she retires (she’s only in her 30s) so I shouldn’t worry. What do you all think
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PennyK, I am getting both H&P after chemo although someone in my chemo group is only getting H. I was also on both during chemo. Seems our tumors were of similar size. My OC also said that even though I had a PCR one of my nodes had scarring which indicated cells had reached the node. He wanted me on both for precautionary reasons. I believe the drugs attack the HER2 cells differently so I am glad to be on it. The insurance company approved my continuing on with both drugs. The gal in my chemo group also had a PCR but I believe her nodes were clear
Take care.
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I am also triple positive, and on Herceptin, not Perjeta. My tumor was 1.3 cm, and yes it seems like 2 cm is the threshold. My MO was originally going to start me on H & P but my insurance wouldn’t cover it because it’s not standard protocol for tumors less than 2 cm. My MO wasn’t concerned, he said the benefits of Perjeta in my case were very minimal, and he was planning to drop Perjeta anyway if I had any bad SEs. So we agreed to go with Herceptin only.
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PennyK - My tumor was >2 cm so I had H & P. I did not have diarrhea (and I did not get a PCR). You should push for it.
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Hi Everyone,
I too asked my MO about Perjeta and he just said it wasn't needed in my case. I just let it go. I had Herceptin only. I do agree with others that 1 year seems a little off. I am seeing a NP now, instead of my MO (fine by me, since I disliked my MO so much) every 4-6 months. I get a full work up (Labs) whenever I go.
Since I will only be going every 6 months - I guess its time to take out my port. The longer I wait, the harder it will be to take out?
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Rljes, I asked my chemo nurse if the port comes out after Herceptin and she said no it comes out whenever you want it too so long as you get it flushed out every 6 months she said a friend of hers still has hers 5 years PFC for BC
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I still have my port, and my last chemo was in December 2014! I just get it flushed every 8 weeks when I get Zoladex. I don't mind it. I worry about taking it out and then needing another port some time down the line....
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I could not wait to get my port out. It hurt when I turned my head, and my backpack strap went across it. Got it removed as soon as possible after final TPH, so I got July- Feb Herceptin and Perjeta via an IV in arm, which was no big deal. Funny, after the surgeon removed it, he found it to be mildly infected- no wonder it hurt. I am skinny and it stuck out. Do what you want. I am living my life 100%, and if I get a recurrence, will deal with it then.
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Mactaz,
What is a PCR? I haven’t heard that term.
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pennyK...I am TCH so no perjeta for me either. My MO and BS both feel nothing left where the tumor was and I have my last of 6 chemos next week.
My BS said they the community in general is not quite sure when and where to use perjeta but with larger tumors usually. Both of my docs are expecting complete response but the path report will tell.
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PennyK, PCR means pathological complete response or after neo-adjunct therapy and chemo no cancer cells are found.
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TriplePH,
I'm about to hit my 5 year mark. I had regular checkups with the MO every 3 months, then 4 months for a while and just now started my every 6 month return checkups. A whole year seems an extremely long time between visits to me.
I also still have my port also. It really doesn't bother me, so I haven't pushed at having it removed. at first my doctor said we would leave it in for a few years because our type of breast cancer was more prone to returning in the first few years and if it did I wouldn't have to have another port installed. I was okay with that. I could understand wanting it gone if it was painful or just in an awkward place.
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I concur with others about the level of follow up for us triple positives after finishing treatment with Herceptin/Perjeta. As explained to me by my MO, and also by a second-opinion MO I saw at MSK, the standard is: no scans or cancer markers (unless there are symptoms), but frequent follow up during the first three years after treatment, starting every three months, then six; then eventually once a year after having reached the three years mark.
End of treatment is terrifying, upsetting and a difficult time for most patients. This is a thing. The psychiatrist at my cancer center explained this to me, and it was also my experience and that of many others. I am not sure if MOs acknowledge this.
For those of you asking about Perjeta treatment. I got Perjeta because I had a biggish tumour (>3cm and nodal involvement) and unfortunately also had substantial disease after neoadjuvant therapy, both in breast and nodes. I have the paper describing the results of the trial based on which Perjeta was approved for treatment of early stage and the benefit looks very modest. Not sure if this is a paper I downloaded for free or paid for, in any case I have it in pdf format and will gladly share with anybody who wants to read it. Just PM me.
Best,
LaughingGull
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laughingGull, you mentioned cancer markers, what is that?
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Sweetie999:
I did Taxotere and cold capped but my hair still started falling out about 14 days after my first infusion. I lost my eyebrows and eye lashes towards the end of chemotherapy...I am about 6 months PFC and my eye lashes still come out very easily.
It seems I'm either hot or cold with not much in between. Cold capping taught me that a cold head has a significant effect on body tempurature and I was pretty bald on top by the end of chemotherapy and made good use out of outdoors caps to stay warm.
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MACTAZ--this is an incomplete response but I only know cancer markers from a good friend who had OC. My understanding is they are not perfectly correlated with cancer recurrence but do provide some information. They checked her CA-125 often but I don't think checking cancer blood markers is typical for early stage BC. I've never had anything like that checked.
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mactaz - whether to check markers is an individualized decision made according to oncologist or center philisophy. Because markers are not accurate for every patient and are susceptible to rising for other reasons, a number of oncologists don’t use them, or only use them for advanced stage patients. For some, markers are a good indicator of progression, but for others they are not accurate, even with progression. My oncologist believes markers can provide important information so he uses them with patients they show accuracy for. I have regularly had CEA and CA27/29 done, and for me, they have been a reliable indication of problems, but not a recurrence of cancer, so far. For me, inflammation causes my markers to rise - sometimes significantly - but that rise in markers corresponded to an abnormal PET, which revealed a large suture granuloma at the site of my original cancer, and three types of abnormal inflammatory cells. The investigatory process would not have happened without that rise In markers. Surgery corrected the problem, markers returned to normal. There is an additional marker used also, CA15-3, which I believe is interchangeable with CA27/29.
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Thanks Ingerp and SpecialK, I guess I do get one of the blood tests, CA 15-3. My tests don’t seem to say much, they are within normal range, even when I was first diagnosed. But it has dropped lower since I finished chemo. I asked my OC about it once as it had increased even after I started chemo, he said he just used it to monitor for possible changes but would need to see larger fluctuations to be concerned.
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mactaz - it is not unusual for chemo to cause inflammation that registers on tumor marker tests. I was double the high end of the range by the time I finished chemo - had been within the range before I started. Most oncologists who use markers are looking for trending info such as results that continue to climb - and don't make treatment decisions based on a single test result.
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SpecialK:
Do you know much about the circulating tumor cell test? My facility doesn't offer it due to lack of guidelines but I would like to have it done if it can detect the presence of tumor cells as tumor markers have not been a good indicator for me.
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WC3 - I believe you are referring to the Cellsearch CTC test. I have awareness of it, but have no personal experience with it. My understanding is that it has FDA approval, costs about $1,000, and some insurance companies are covering it, but I believe it is predominantly used for metastatic disease. I don’t know if it is as useful in early stagers who have been treated and are NED, and I don’t think it would be covered
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thanks so much SpecialK, you are a great resource for us
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Hi Ladies! I finished Herceptin and Perjeta infusions two weeks ago and have to start Nerlynx on Monday. My MO has only had a few women who have successfully completed the full year of Nerlynx. He said most quit because the side effects are too severe. For those of you who have taken it, can you offer any words of wisdom? I am trying not to be scared of these six little pills, but I can't help it.
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Hi tld2017. I will be starting Nerlynx tomorrow. I was just re-reading a post by Zoziana in the Nerlynx thread and I will be following her recommendations, which sound pretty sensical to me.
https://community.breastcancer.org/forum/80/topics...
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btw, how much Imodium did they recommend to you? I cant remember what they told me -will have to call the office tomorrow
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Imodium... I was to at 3rd runny movement to take 2 pills and 1 with each additional runny movement until it stopped
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SpecialK:
Thank you for the input.
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LaughingGull, the doctor said I will be taking 6 pills of Nerlynx all at one time each day. He said for days 1 - 14, I should take 2 tablets of Imodium three times a day with food, so basically breakfast, lunch and dinner. For days 15 - 56, I should take 2 tablets twice a day, breakfast and dinner. And then from day 57 on for the rest of the year, I should take 2 tablets as needed up to 4 times a day. My MO said that is just a guide because I might need more than that. He said I could take up to 10 tablets of Imodium a day at the beginning. If that does not stop the D, he said he will prescribe a very strong anti-diarrheal. I have forgotten the name of it but I know it started with a C. Hope this helps!
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