TRIPLE POSITIVE GROUP
Comments
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Specialk...forgot to mention, my PS has all kinds of crazy skin allergies. He went to a person at the IU med center that specializes in that kind of thing. He is allergic to something that is in betadine and hibiclenz, as well as something that is in the best topical steriod, etc. Weird stuff. I always tell him to get out the gloves if I have been using something new.
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Fluff
Wish I had known about the financial help earlier. Each of my coinsurance for my H was well over $700. Why don't these oncology centers know this stuff? Had my last H 2 weeks ago and my port out last week.
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Awesome fluff, about the BRCA. They covered mine - but I had an agreement with them (the testing company) that the max I would pay was something like $300. It was cool b/c my insurance covered it, but my 20% was still > $300, yet I still only had to pay the $300 b/c that was our negotiated agreement. So make sure you check into that!
I had read that about Herceptin, and I think it's an awesome program. Oncotype does a similar thing - they will help cover your copay depending on your income levels. It's so important for everyone to know about this help, given the great costs we incur with our diagnosis (despite insurance!).
I love that you are gettin' your onc to bend a little on the tests. Some of us just need them for peace of mind.
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Sewingnut....i maxxd everything out last year so I think I might apply for the last couple as I have todays and another charge for next month.
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My husband just noted we have a bill for $2500 as the copays for this year. We max out at $3000 though and I still ave at least one surgery and this kidne thing today, so either way I look at it, I will be spending 3000.
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Just found a lump of some kind next to the implant under arm on the non cancer side. Texted my PS who is going to check it out thursday morning to see if it is related to his stuff. He has surgery on Wednesdays but said if he has free time, he will call and get me over. He knows me well and knows I am totally totally paranoid
I am definately going back on anti anxiety drugs. I am not ready to start over before I am finished with treatment.0 -
thanks for that info in the herceptin, fluffqueen. Definitely worth looking into.
I had a lump on my implant too. Went for an ultrasound and it didn't show anything. The image just looked like stacks of paper, not the black blob like the original cancer diagnosis. I was told most likely scar tissue, very unlikely to recur this close to treatment.
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From your fingers to God's ears Wendy.
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Fluff,
Here's hoping its nothing sister.
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Special K Yay!!! your on the mend and your drain is out!! (that was the worst part for me, I had no idea that the tube was so long and ouch!!)Congrats
!!My friend had to use a special surgical (tape), a simple bandaid would cause a rash on her. I am going to inform her about the Betadine too
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Fluff I have 2 lumps (one underneath my mastectomy incision and one under my foob on the bottom, both on non-cancer breast) I have been told by my BS,PS, and my MO that it is just scar tissue and not to worry. (Yeah right!!!) My PS is going to do something with the one under my incision when I have the nipples done. We have to try to remember that the chances are very rare that it is ANYTHING!!
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Oh fluff, I can so understand your anxiety, but please keep reminding yourself that the majority of the time these things are scar tissue. Big HUGS from me! So glad you can text your PS and get a response immediately. You have such a GREAT medical team. You are in great hands.
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Interesting article about our hero Dr Dennis Slamon....scientist who discovered Herceptin..
"
Dr Dennis Slamon, developer of the breast cancer drug Herceptin, believes the future of cancer rests in more targeted approaches, writes RONAN McGREEVY
EVEN IF he had never discovered the breast cancer drug Herceptin, Dr Dennis Slamon’s rise to the top of his profession would be an inspirational story.
The grandson of Syrian emigrants and the son of a Pennsylvanian coal-miner who was invalided when Slamon was a child, he had none of the advantages of money or access, but qualified by way of scholarship through medical school to become the most famous oncologist in the United States.
The story of Herceptin begins in the 1970s when two American scientists discovered oncogenes, the genes that cause cancer. Oncogenes are mutated versions of normal genes which regulate cell growth.
One such gene was HER2 (human epidermal growth factor receptor 2) which makes the HER2 protein. It was discovered by a microbiologist called Dr Axel Ullrich.
The protein is present on the surface of cells as a receptor which takes signals from the chemical human epidermal growth factor to grow normally. In its mutated form it makes cells grow out of control.
Slamon agreed to test the HER2 gene on the cancer tissue samples he had compiled in his laboratory. He found a match with breast cancer and those samples from women who had an oversupply of HER2 had a particularly aggressive form of the disease.
Working together with the biotechnology company Genentech, he and others discovered an antibody made from mouse protein which stopped the HER2 “overexpressing”, or causing the breast cancer cells to grow out of control. Approximately 20 per cent of breast cancer patients are known as HER2-positive.
Ullrich and Slamon published their findings in Science magazine in 1987, but it would take another 11 years before the Food and Drugs Administration (FDA) in the United States licensed Herceptin for use.
In the intervening years Slamon had to battle the scepticism of the medical profession, the reluctance of Genentech to take on such an unknown treatment when other cancer antibodies had failed, three torturous drug trials, where many patients died, and the attention of desperate women who wanted the drug given to them on compassionate grounds.
If the story of a single-minded obsessive battling numerous obstacles to launch a life-saving drug sounds like the stuff of a Hollywood film, it became precisely that.
Living Proof, based on the book HER2 by Robert Bazell, was released in 2008. Slamon was played by Harry Connick Jr."
http://www.irishtimes.com/newspaper/health/2012/0228/1224312475463.html
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It was a good movie!
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Got my sleeve today and flying to Cali tomorrow. They told me that even though I don't have LE, I need to wear the sleeve while flying to keep from getting LE. These girls just attended an LE seminar and that is what they were told. It is pretty comfortable so I guess I'll wear it.
Is it the pressure of flying that causes LE problems?
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Arlene - my understanding is that it is the lack of pressure - it's like you are at a higher altitude so there is less pressure pushing on your arm to keep the lymph moving. I was told to wear my sleeve when I go up above a certain altitude as well like up a mountain. Good luck! Oh yeah, don't take it off right away when you land. I was told to wait a bit but I can't remember how long, perhaps someone else knows.0
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Thanks Omaz. Guess I'll keep it on during the 4 hour layover and then for awhile after landing.
Thanks so much for responding.
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ashla I read the book "Her-2: The Making of Herceptin, a Revolutionary Treatment for Breast Cancer" The politics alone will anger you. Ironically I found out by reading the book that my onc was also involved in the initial trails. One of the stories about her made my jaw drop. I was actually a few tx away from finishing Herceptin when I finished the book.0
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Lago..
I have not seen the movie nor have I read the books but I remember a very similar story re the discovery that ulcers were caused by a bacteria...not stress. If I remember correctly there was a medical examiner who discovered through autopsy that most people with stomach ulcers had pyelori bacteria in their digestive system.
It took him years of fighting to get that by the medical , government , phrmaceutical, financial powers that be.0 -
Hi, I posted this on another thread, but someone suggested I come to this thread, so I am reposting it here in hopes of getting more responses. My name is Angela and I am 44 years old. I was diagnosed in January with Estrogen+, Progesterone+, Her2+ Invasive Ductal Carcinoma. No family history of cancer.
I had a bilateral mastectomy 12 days ago. (my choice) I had one tumor in my right breast less than 2 cm. I had one node positive for micrometastisis (is this a word?).
I met with my first oncologist yesterday and I have a second opinion today. (if I can get there in this snow storm) Yesterday's onc suggested Docetaxel and Carboplatin,(every 3 weeks for 6 treatments) and Herceptin. (weekly for 18 visits, then every 3 weeks till a year is complete.)
I told her I was getting a second opinion tomorrow and she said likely they
will either agree with her (or very closely), or suggest the combo of
Cyclophosphamide, Doxorubicin, Paclitaxel along with Herceptin. She said
the Dana Farber Cancer institute in Boston still uses this protocol but that
she believes the first protocol listed causes fewer cases of heart problems
and has fewer side effects as well as being equally as beneficial.Can you tell me what you know about this or give me links to studies as well as telling me your experience with either of these protocols.
Thank you very much,
Angela
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Angela my onc recommends a similar cocktail, 6 tx of Taxotore (docetaxel) with Carboplatin and 1 year of Herceptin because she too feels it's less toxic to the heart. Herceptin can in some cases cause heart issues although not common. Doxiorubicin (Adriamycin) is also know to possibly give heart issues. If an onc does prescribe Adriamycin s/he will not give it at the same time you get herceptin because of this. Adriamycin is the old standard. It is maybe a couple of percentage points more effective in the studies but the risk of heart issues is a bit higher with Adriamycin. Both are valid treatments.
I have no heart issues (finished Herceptin this past September, finished chemo over a year ago). I do still have some minor neuropathy in my left heel but not bad. I did get that rare SE of nails lifting (taxotere). A few of my toenails fell off. Some of my nails still have some cosmetic issues but are slowly getting better. A couple of toenails will never be the same but not that bad… unless I was a foot model and I'm not.
Sounds like your onc is prescribing the newer protocal but if it makes you feel more comfortable go for a 2nd opinion. Are you in the Boston area? BTW I have no family history as well.
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Angela,
I just finished neo adjuvant TCH..(docetaxel..taxotere, carboplatin, and herceptin)chemo therapy. I had 6 treatments every three weeks and will continue to get herceptin every three weeks for 11 more treatments( one year) for a total of 17 herceptin treatments.
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Ashla,
How did the treatment affect you?
Angela
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Angela,
I would describe my experience as better than I expected. I don't know yet about major side effects like heart problems etc but the short term ses were manageable. No nausea whatsoever. THey gave me premeds iv and Emend and another pill for nausea and they worked fortunately. Caused constipation after the third day post chemo which was managed with stools softeners and diet. I had lost most of my hair by about 2 months in. I lost some of my eyebrows and lashes. I have some neuropathy in my fingers and toes. I had a slightly bloody nose each course about a week after treatment. Herceptin gives you a constant runny nose. About 3 days after chemo my legs felt like lead weights and had some aching in my leg joints and it was difficult doing much walking. And very , very tired for at least half the month.
It's the head game that's much harder to handle than the chemo imho.
Before each treatment they do bloodwork and I made it through without any boosts even though the counts were lower than normal.
BTW....I just had my post chemo MRI and my tumor appears to be almost if not completely gone!
Won't know for sure until surgery in a few weeks.
I'm a newbie here but you came to the right place for advice and support. These ladies are the most wonderful, brave, intelligent support system.
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Forgot to mention I had no nausea either. I too had constipation for 3 days after each treatment (handled with metamucil and probiotic), runny nose, tearing and twitching eyes towards the end of treatment, heartburn, fluid retention, stiffness, nose bleeds, blood vessel burst in eye (sounds and looks horrible but not that bad. It did heal in about a week), some blurriness for a few days from the emmend, bone pain from the nuelasta and some minor taste changes. Most of these came on gradually. It sounds awful but I was working out for 70 minutes in the gym after the first 3 treatments. Oh and of course the hair went.
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Lago and Angela...
Ditto to just about everything lago wrote. But I forgot two ses You get this disgusting taste in your mouth that makes certain food taste horrendous and even favorite foods a turnoff. Metallic? Reminds me of the taste left after you swallow liquid vitamins. Ugh!
I gained about 10 lbs which has gone down to about 6 now. Partly increased appetite at cetain points in the cycle. Partly lack of exercise and partly because I was eating a bit ofevery healthful food I could think of EVERY single day!
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I didn't get the metallic taste but I found pepper and nuts tasted bitter. I didn't have to change my diet much. I too gained about 12 but most of it was fluid.
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I would ditto just about everything above. I could not eat anything either naturally or artificiallly sweetened for about 7-9 days after each treatment due to the taste change (including fruit, sodas, even tomato products). I drank a lot of sparkling water and ate a lot of bland foods such as pastas, rice, plain proteins, etc. This really limited my diet during each round. I did not have the constipation problem - I had the opposite problem. My diarhea would start like clockwork the afternoon of day 5 and continue for about 5 days. My advice on that is take the immodium like they tell you to. I was hesitant the first couple of rounds to take "more meds". But, I couldn't hardly leave my house unless I did and it got worse each round.
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I second Ilboymom, I got the diarrhea too. I am on the TCH protocol you mentioned. TC x 6 Herceptin weekly, then x every 3weeks for a year. Good luck.
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ditto and ditto
Moonflwr and I are newbies just starting chemo this month. On the same TCH protocol. Diarrhea, runny nose, and the terrible taste thing is the worse SEs i have for the most part. About day 4 post TX I will get really really tired and achy but it only last 2-3 days this last time. Then I have 2 good weeks for the most part!
Good luck!!
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