TRIPLE POSITIVE GROUP
Comments
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The odd thing for me about switching is I now am pretty close with… remember Nurse Ratched? Seriously we get along so well now. But losing my PCP and Onc is huge. Next would be my BS but I don't have any more tissue they can removed so I'm sure I can find someone else to feel me up once a year. PS is already out of network so hopefully I won't need anymore surgery because the surgery facility is now out of network.
I know there are other good ones but when you are going to the top HER2+ Onc why switch. I hear she now only sees HER2+ patients.
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lago - so if you get de-ported that means I will be one of the only old-timers with a port still!
On the out-of-network thing - my PS is out of network as well. I did a skin/nipple sparing BMX and my BS wanted this specific PS. I didn't ask a lot of questions about that because I trusted my BS and if this was who he wanted I was cool with it. My insurance did an out-of-network referral and paid the PS as if he was in network. I have military related insurance (Tricare) and they are usually pretty restrictive but this was OK with them, it just required some extra paperwork. I don't know if other plans can do this but it is worth it to ask. Also, I had another 5 surgeries with him that had nothing to do with the BS - expander removal/replacement, skin excisions, and exchange, and they paid for all of them.
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Good Morning Ladies, I did as I was told I took the 2 sleeping pills last night and I sleeped a total of 8 hours, feel really good when I woke up this morning. Hope everyone else is well today. Hugs from Caylee
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I am sorry Lago. I hope it works out for you. I have Aetna Managed Care. I will have to call and see if my care has changed again.
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TonLee- still working. It's a keeper! Many thanks. Going to try and get out for a walk here.
Caylee- pray your feeling good today. Sending lots of prayers and encouragement your way. Fluids, fluids fluids. I talked to my onc about steroids and he said he wanted to keep it all the same. I'm supposed to take another 1/2 tab today and tomorrow of steroid. Took my phenergan this am. My face and chest has a lovely flush. Let me know how your doing when you can. :-)
Any ideas? MO said he can't understand why I had such a horrible bed bound headache last tx, on days 4&5.
Pbrain- if they offer the extra fluids, take them. Have IV pole, will travel to commode. Lol! Make sure to replace electrolytes.0 -
Caylee- just saw your post. Yay for sleeping thru night and feeling good. I'm extending my oral steroids, to come down off it more gently.
Lago- sorry to hear about the insurance headache. That's what it is. I'm dealing with insurance now too, although different than what you are. Still a pain in the patuty!0 -
Tori this is my 3rd insurance since diagnosed. Don't get me started.
SpecialK I could have gone with the other PS that is in network. He just scared the shit out of me. First insurance paid pretty well. The others weren't so great. BTW I've had my port since Oct. 4th 2010! That's over 2 years. I need to get it out especially since my port surgeon will be out of network as of the Jan if things don't get resolved.
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Lago,
That stinks. None of my providers (except the MO) are the same as when I started. And I don't like how it screws with continuity of care (which is why I paid out of pocket to follow my PS to Texas for exchange). I hope you find an even BETTER team!
Ms Tori,
Isn't Mag Ox wonderful? And it's cheap!!
I had the WORST headaches the first few txs. My Onc said it was a SE from Herceptin. One of them lasted, no kidding, 5 days. I happened to be in the hospital (osteopenic) for that entire time, so the headaches are well documented in my records. They gave me shots, pills, nothing TOUCHED the throbbing.
I can say that it lessened with time. Though when I went to Herceptin only...always on those days I'd get a headache. But not horrible. Just an aching throb.
Gee,
That is pretty amazing....winning during tx. Thank you for sharing that!
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Lago: Did I read that right that you're BS told you when your cancer started growing? How did he do that? I would love to ask the surgeon to look for this when I get my surgery. I'm "interviewing" surgeons right now. I met one back in August before chemo who said that he didn't really think a bilateral mastectomy was necessary. I, however, DO want one. Thus, I'm starting to look for second opinions. Perhaps this is a question I can put on my list. I meet another BS on November 23.
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TonLee- thanks! I was researching all SE of TCH and hercepton was only one that listed headache as SE in 26% of patients. Mentioned it my MO and he said its possibility. Said to just remain hydrated and take pain meds for comfort. I mean, I need the Hercepton. Thanks for confirmation. Oh! And yes, mag ox is a gem and keeper!
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Good morning everyone -
ashla - thanks for that link to the Wiley online library! It's one I didn't have and have just opened it up in a new tab to look at it this morning.
lago - re: California and cancer, we live close to a freeway. I often forget it's there because the way our house is positioned you can't see it and surprisingly enough, can't hear it that much either but it is literally over the hill from our house. I thought the soot (?) from the freeway was bad until we had the big fires back in 2009. During the fires there was a layer of ash over everything.
Do you still have the same boss? If so, I hope he's become less of an ass over the years!
I'm rarely ever in the Chicago area because my parents moved down to the Louisville area soon after I moved there after college. My husband works for a firm in Chicago but when we get to Midway he takes a shuttle bus downtown and I get on the next flight for Louisville - but thanks for the thought!
Jennt28 - you and everyone else are absolutely right about wasting time worrying about it. I need to stop - and I'm sure I will once I'm out of this holding pattern and actually moving forward with treatment. Then I'll have to put all my energy toward getting better. I'm obsessive compulsvie (yes, really, it's not self-diagnosed) and the OCD comes out in full force when I'm in a stressful situation or when I feel out of control. My urge to want to fix what's broken is all wrapped up with what might have caused it and I'm sure it's directly related to having not started treatment yet, i.e. surgery and then chemical treatment.
Thanks to everyone for your kindness/patience - and the encouragement to get past this part of it. I really do appreciate it.
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lago - I am right behind you on the port - mine was put in during BMX on Nov. 1, 2010. Because of all the extra surgery I had I did not start chemo until Feb. of 2011, so I was delayed. Now that I am on the flushing schedule I realized that it should have been flushed at some point between BMX and start of chemo because that was three and a half months without use or flush, oops! My out-of-network just took what insurance paid and did not charge me the difference - I was fortunate.
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Hi MsTori: I'm starting to feel sleepy, so I am going to nap this afternoon. When you take half of the dose for steroids, the poison of chemo comes quicker. What is phenergan? What is that for? I took my meds this morning and only am taking anti nausea for 2 more days then that's it. Where do u live? I would be very interested to know exactly what medicine you take before chemo, what your chemo drug is and what you take the following days after, just to see how different it is from mine. I hope u are well today, hugs from Caylee
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Geewhiz, what an inspiration you are!!! Can you come and stay with me for a few months in Indy? I'm the laziest mofo ever created...
Sol, I love you line about picking us up out of a lineup. I could only find Lago because I've watched her wonderful videos for ACS. You other thugs, I'd have no idea ;-)
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I have been reading these boards for the last several weeks, but have never posted.
It's hard to believe that after 12 years I am once again joining a Breast cancer forum! I was diagnosed with DCIS grade 3 back in 2000 and had a sentinal node biopsy which tested positive for micrometastatic ductal carcinoma. I elected to have a bilateral mastectomy because I had very fibrocystic breasts and had been getting mamos every 6 months for several years. I had reconstruction but no chemo and no rads, there was a slight suggestion for Tamoxofen but I chose not to do it. I never regretted my decisions about the Bilateral or rejecting the tamoxofen. 12 years later, all the docs have said I made the right choice back then.
A few months ago I found a lump under my arm on the scar line from before. Doc says probably no big deal, maybe just scar tissue, but takes it out and once again I hear those dreaded 3 words. So now I find myself with metastatic adenocarcinoma in the lyphoid tissue. ER+ 90% PR+ 20%, HER2+ 3. I have been to 3 surgeons, (one was a complete waste of time) one oncologist, had a PET scan, an MRI, an EKG and blood work. Fortunately the PET did not show anything other than "hot spots" in the axilla. I finally found a surgeon that I think I like and have gone to see the onc that he works with. I like both of them and feel comfortable with both but they are over an hour away. The BS says do the chemo first to shrink the cancer and make the surgery easier. I still have to see another oncologist that is closer to home and if he comes up with the same drug cocktail (Taxotere, carboplatin and herceptin) and I feel comfortable with him, I will probably go to him since it will be every 3 weeks for a year. At this point, I think chemo will start the week after Thanksgiving. Followed by possible surgery and radiation. I say possible surgery because it would be a complete axillary dissection taking out all the lymph nodes under my arm. The possible and probable side effects from that are something I am not sure I can live with.
I am really not looking forward to any of this, but I have been encouraged by many of your posts. Thank you to all of you who are so open about what you are going through. It really is a help!0 -
Welcome Bren....
The breast cancer world has changed alot in the past 12 years and thankfully for all of us in this forum it has changed most for us her 2 pos girls and in a postive way! I have a few friends who were dxed at the same time as you originally.
I had neo adjuvant TCH chemo followed by surgery. For me at least it was the right decision . You will have TCH or a year? OR is it 6X TCH followed by 11 more herceptin?
Where are you located? Maybe someone can suggest a MO/ BS team.0 -
Thanks for the Welcome!
ashla, sorry I wasn't clear on that. It is TCH x6 then 11 more herceptin. Did you have a complete axillary dissection?
I live about an hour NW of Philadelphia.
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Bren58,
I made my first post on this thread as well just a few days ago so I'm really new to this rodeo but I wanted to say hi and if it's okay, share a portion of an email I received from an old friend in another state just minutes before reading your post. She's one of those people who is always there to say something to make someone else feel better. Copied/pasted from her email:
***I had a client that totally recuperated from stage 4. This was like five years ago and very encouraging. She had told me her prognosis at the time was not good but she's absolutely fine now.
)I don't know what your prognosis is and to be perfectly honest, I don't even know what mine is! I just know that every time someone shares a story like that with me I feel momentarily better so I thought I would share.
Something else from this week - I use a real estate search engine and have had a few correspondences with a reator in another city. The other day he emailed me about looking at property and I relayed to him that I had just been perusing the site for a distraction that particular day and that any and all plans are very much on hold because of being diagnosed with cancer. This is what he wrote back:
***I'm sorry to hear about your illness, but keep positive. I have been through chemo 4 times since 2001 and am currently in remission. They do great things now days, I hope they can do that for you.
Anyway, if you're HER2+ you're in the right place...
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kayb, thanks for the words of encouragement. My surgery is coming up this week so the wheels of progress are almost in motion.
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Bren..
No I didn't have axillary node disection because my nodes were clear. There are others in the forum who can address that for you.
And Bren and Lee....both of you should know that this year will be tough psychologically and physically . The many difficult decisions are daunting and the sheer length of the treatments...one year...will take stamina . But it is all very doable and the prognosis is very good since the introduction of herceptin to our treatments. There are other treatments on the way and many i n this forum are in trials for these new treatments.0 -
Welcome Bren, I grew up about 40 minutes NW of Philly in Souderton. :-) I'm in Indy now, but still go home all the time to see my family. I have a brother in Montgomeryville, Mom still in Souderton and a sister in Philadelphia. I miss home, but love it here.
And Ashla is right, so much has changed these days with breast cancer Susan G and the crew have done so much! I think you did the best you could back then, and you will still be fine now. I have many friends who have had the lymph node removal, and it is a pain, but it is a-OK for them, so don't go there until you have to.
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The longterm comprehensive study of breast cancer was found in Nature last month. It made a huge newsstory. THis NYTimes article provides a link. IT is way over a layman's head but is informative in many ways nonetheless.
"the fourth type of breast cancer is what the researchers called HER2-enriched. Breast cancers often have extra copies of a gene, HER2, that drives their growth. A drug, Herceptin, can block the gene and has changed the prognosis for these patients from one of the worst in breast cancer to one of the best."
http://www.nytimes.com/2012/09/24/health/study-finds-variations-of-breast-cancer.html?_r=0
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Caylee- you have a private message
Hi ladies! Welcome Bren. Great bunch of ladies here. I just had my chemo yesterday, and just got that dang Nuelastra shot a few minutes ago. So took my Ativan, phenergan, and Tylenol and off to rest. I did get put for a walk earlier. But it's rest time now.0 -
Foreverchanged my BS was able to give an estimate based on looking at all my mammos and the ultra sounds. I had an ultra sound 4 years prior to being diagnosed and everyone said it was nothing… and it wasn't followed up.
LeeA I haven't worked for that (_*_) since 2006.
SpecialK I only had my port flushed every 3 months so you are not far off. Never had any problems. Just had it accessed for blood work for deportation a few weeks ago.
Bren that sucks you have to do this again. As far as lymph nodes. I had 10 removed and no rads but got LE (although no cancer in my nodes). I caught it early and wear my sleeve daily. I also do some exercises. For me it's very duable but I did catch it early, wear my sleeve and exercise. Are all the oncs & BSs recommending removing all nodes? I too have a sister just west of phili but we haven't spoken since 1 week after my BMX. Long story.
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Were any of you diagnosed as having invasive ductal carcinoma and ductal carcinoma in situ? The first pathology report I was given read as follows:
Diagnosis:
Invasive ductal carcinoma, grade 3/3 (tubules 3, mitoses 2, nuclei 3, 8/9)
Ductal carcinoma in situ, high grade, comedo pattern
Am I correct in assuming it's common for the pathology report to show both IDC and DCIS? Did any of you have pathology reports that showed both?
The radiologist at my BS's office showed me the MRI image of the tumor and said it was a single tumor. At one point they thought it was a tumor with an extension piece (this was during the ultrasound at the BS's office - post biopsy and diagnosis but pre-MRI). After the MRI they decided the extension (?) was a blood product (hematoma?).
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LeeA - I had both DCIS and IDC - it is pretty common.
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lago, so far the consenses is to remove ALL the nodes. One was already removed that was cancerous and some others showed up on the PET scan. I am awaiting the results of the axilla MRI I had done last week. That should show a little more about what is going on in the Lymph nodes. But one thing at a time. I have to get thru chemo first.
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Bren,
Sorry you're dancing with this beast again.
The axilla is tricky. I totally understand your desire to keep as many lymph nodes as possible. The latest research that came out last year... shows that rads to the axilla is just as effective as surgery in the absence of gross disease.
You obviously have gross disease....but you may want to ask your surgeon if he can take just the first level lymphs (if the ones that lit up on the PET are in that group) and then radiate the others. The radiation will kill any lingering cancer cells according to the research.
It's a tuff call. I found when fighting to keep my axilla (and everyone, including me is pretty certain there was more cancer in the nodes I wouldn't let them take,) that most surgeons believe any SE short of death is acceptable. But they aren't the ones who have to live with it.
Please keep us posted. You're blazing the recurrence trail for us. And if there is anything I can do...help with research or whatever...please don't hesitate to ask.
Tonya
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Bren - sorry you have to come back to these forums...really sucks. Just wanted to say that my team is 90 minutes from me and I went every week for the chemo, same TCH. They urged chemo before surgery, but when all was said and done, I have elected NOT to have my breasts removed as we can't remove my bones sooo. Anyway...Herceptin is a life saver as far as I'm concerned if your heart can tolerate it. I HIGHLY recommend you start taking CoQ10 100mg and Melatonin 20mg every night. I really believe it has helped my EF remain steady. I had one dip during (and before starting the supplements) chemo but steady freddy since. I still go every 3 weeks, so what for 18 mos now on Herceptin and Xgeva for my bones, and have been NED for 13 mos. Just wanted you to kno, as these other special ladies have, that it's a tough road but doable.
Love, prayers and positive healing energy to all!
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LeeA my total tumor was about 6 or 6.5cm. Only 5.5cm was IDC. The remaining 1cm was DCIS. They only based my staging on the IDC part although I don't know if it would have made any difference if they used the entire tumor. That was the final path. My biopsy only revealed the IDC.
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