TRIPLE POSITIVE GROUP
Comments
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Dear Beautiful-- I had the same response-- felt like it was acid when I urinated-- I started using free and clear wipes and that helped. Don't despair-- this does not last more than a few days. Someone mentioned bladder infection and that could be - but I just felt like skin was burning off. The wipes help and so did warm washcloths.
I too feel a lot of guilt about my family and what this is putting them through and how little I can do some days-- but it is not forever. Everything looks worse when you feel miserable-- don't despair- I know its easy to say but I have felt just like you described and you will make it.
Curling up in a ball and crying might help. Someone told me my tears were helping my body heal and get rid of the toxins. At one point, I believe I could of stopped the drought in California if I had just moved outside to cry- its ok-- you can do this- sending you positive energy and most importantly sending you hope- you will make it - your kids will too- just at a really hard point - don't give up-- you can do this
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beautifullybroken, you might need a rX for mouth stuff. I put up with a yucky tongue for a few days in my first round, and the MO and nurse said i should use special rX stuff if it happened again (it didn't). The name of the game here is treat the side effects as best you can. Zofran (for nausea) and ativan (for anxiety) are personal favorites. Be kind to yourself. This won't last forever. Even a week from now you'll likely feel a lot more comfortable.
Chemo suffering is like giving birth to ourselves, i feel. Good luck.
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I had double mastectomy and now have implants.
I will still have mammograms and breast MRIs for the rest of my life. My first mammogram will be in six months in June. This is FDA mandated because of the implants.
I was surprised when ,y surgeon told me this. But then, I have been surprised at something all the time since this journey started
Coach Vicky
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coachvicky - it may be that your center has the special equipment and personnel needed to do a mammogram on reconstructed breasts, but I literally don't know a single person who has regularly scheduled mammograms on reconstructed breasts, including on this site. It is not the norm - not saying it is wrong - just not the norm. I have seen a few women who have had mammograms when there has been a suspected recurrence between the implant and the skin. MRI seems to be the tool of choice to inspect implant integrity. You might want to check with your manufacturer's warranty to make sure that if you have a rupture caused by mammography they will still cover the implant within the warranty period. The FDA info I have read does not indicate it is mandatory for those with reconstructed breasts to have regular mammograms, but rather indicates it is up to the discretion of the surgeon, and further states that MRI is the better tool for detecting rupture. I am not trying to be argumentative but just don't want others reading along here to worry that they should be having mammograms, and that their surgeons didn't inform them.
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Thanks SpecialK,
I see your note as information and certainly not argumentative.
I just didn't want anyone else as surprised as I was with what my Plastic Surgeon gave as future directions.
Frankly, these implants, although a wonderful outcome, were far more detailed than I had researched. Not only did I have to read the manufacture's book on my type of implants I also had to take a test showing that I understood this!
In many was I am very grateful for all the detail ... just really surprised. My warranty book (Allergan) states "the current recommendations for getting screening / preoperative mammograms are no different for women with breast implants than for those without implants." These are diagnostic mammograms not screening mammograms. And, yes, as your write it takes special techniques, technologists, and radiologists.
So, it seems it may be the type of implant and the plastic surgeon. I had skin saving surgery and that, too, may be a factor.
Coach Vicky
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coachvicky - Glad you understood why I posted! I have had to sign the manufacturer's form for each of the implants I have received - yes, there have been several, lol! I have also had both Mentor and Allergan products and the signing requirement was the same for each, but I didn't have to take a test - wow! One thing to note is that there is no difference between implants used for augmentation and for reconstruction, and for those who have augmented the screening mammogram recommendation definitely does not change. I would think that the comment in the literature about continuing to have screening mammos is geared more to those who have augmented. I think you are correct about this being the philosophy of each surgeon coming into play as to whether to do mammos after recon, but FWIW I had both skin and nipple spaing surgery and was not advised to have mammograms. I also think each doc gears their recommendations based on their personal experience with their patients - for instance, my oncological breast surgeon does bi-lat SNB on his BMX patients even if there is no bi-lat cancer, other surgeons don't do this. He does because over the course of his practice he has seen too much undetected cancer on the supposedly "prophy" breast and once the breast tissue is gone the opportunity to do a SNB is lost. That is just the way he has chosen to proceed. Other surgeons don't want to up the risk of lymphedema, so they elect to skip the SNB without any proven evidence of bi-lat cancer. It may be that your surgeon has seen a number of patients recur after recon and feels that mammography is a useful tool. In any event, I am glad that you will be thoroughly surveiled, and it could be useful for you to post about the mammogram after recon experience so that others can learn about it.
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SpecialK
What a great post!
My plastic surgeon's wife is a survivor. I think it makes a big difference in his practice.
My surgeon is like yours ... take both breasts and don't risk the chance cancer in the prophylactic one. That took awhile to wrap my head around. The rest of my story is the left breast where the cancer was originally found was not the more serious cancer (if there are degrees). Once found in the left breast, my insurance allowed for a breast MRI where the 4cm lobular carcinoma was found in my right breast! That was a surprise as it did not show on mammogram.
I believe in these conversations we have posted the essence is to understand there are commonalities but there are also differences in approaches, philosophies, and treatments.
I remained grateful to this site and the people who share. Because of your kindness to post, I will ask questions at my next appointment. Thank you.
Coach Vicky
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Sportsmom - I asked to have both breast "cut off" to avoid chemo and rads but was told that with +++, I would have to have TCH and rads anyway, so went with a lumpectomy. The margins weren't clear so the surgeon went back in and those margins weren't clear either. My body gave up after 4 rounds TCH (was supposed to have 6) & herceptin gave me heart failure after 7 rounds which included the first 4 TCH. Now, I get a little uneasy before my annual mammograms but being the optimistic type, I usually shake off any worry during the rest of the year. Stay positive, you'll get through this.
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You nwent through heart failure from the herceptin? Oh my dear Lord. How did you know? What happened? If you don't mind me asking.
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This site has great research on Herceptin. Just do a search and within seconds easily readable studies will be delivered to you. These studies / references really helped me have deep conversations with my Oncologist about treatment.
If you take Herceptin you will regularly have a MUGA test for your heart pumping functions. A score is given which determes if you can continue on Herceptin or not.
After reading the research on Herceptin, I decided to aggressively start walking 6 days a week. I have no idea if it is helping my heat pumping function or not.
Coach Vicky
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beautifully - just in case blownaway is not back for a bit, I wanted to explain about Herceptin and CHF (congestive heart failure). Because it is a known side effect of Herceptin all who will receive it should have an echocardiogram or MUGA scan prior to the start for a baseline. This test measures the LVEF (left ventricle ejection fraction) which is the pumping mechanism of your heart. Docs are looking for a normal measurement with this test, and then will administer a quarterly test during the year of Herceptin to see if there is a decline in ejection fraction. Usually they want to see if you have either a 10 point drop in a quarter, or a 10% drop. If either of these happen, Herceptin is usually discontinued - usually you have a cardiology consult - sometimes you can start Herceptin again after a break, but some can't. For most the CHF is reversible with time, but a small percentage of Her2+ patients have a more permanent CHF situation after Herceptin.
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For what it's worth, i was worried about my LV ejection fraction being too low and that if it were to drop much i might be kicked off Herceptin. At my first echocardiogram my LVEF was 55. I exercised until chemo drained away my inspiration, and to my great delight my ejection went UP, measured as 63 at the second echocardiogram.
Herceptin was also a reason why my MO and i both preferred TC for me rather than AC, which has shown higher levels of cardiotoxicity. Taking a harsher chemo only to be kicked off Herceptin would be a poor trade.
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Thank you ladies for the response. The doctor did have an echo done on my heart last week. It all came back normal thankfully. They did tell me I would be getting regular echos done every 3 months to keep an eye on side effects although as I stated above I did not realize that heart failure was a side effect. I think that so much information has been thrown at me so quickly that it was hard to process and remember it all. I have to say this site and the women here are amazing, your all amazing for all of your help. I went to the oncologist this morning after calling and speaking with her yesterday. Upon an exam they found that I wasn't suffering from severe dry mouth, that its actually that one of the chemo meds, they think the carboplatin scalded (burned) my tounge, mouth, and throat. Which in turn made it hard to drink fluids, then also started to dehydrate me. I can't believe how quickly it happened. Talking right now is not so much of an option because the pain is too much. So they gave me fluids today along with iv steriods. Tomorrow I'm going back in the morning for more of the same. The also gave me an oral swish that has nystatin, hydrocortisone, Benadryl and tetracyclines to help. Along with pain medication. I have a rare auto immune disease called bechets disease and my oncologist thinks that's why it's hitting so hard. She said it looked like my mouth and what not had gone through a round or two of radiation. With the fluids I can pee normally thank goodness. Hopefully over the next couple of days with the swish and steriods it will subside. Fingers crossed. They are adjusting the carboplatin portion of my chemo to hopefully avoid this situation again with my next chemo treatment which is on the 03/03. Realizing now day 3 is when it hits and it hits hard. Damn!
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day three just sucks beautifully. Good news is every day after day three feels.better. sorry for your rotten experience out the gate, but glad you went in to talk to your team!
I have been suffering from very persistent nausea upon waking, since christmas. It's progressed to where I am nauseous all day every day. Went to my GP today, and got the dreaded "hmmm"...it's PROBABLY acid reflux, but sometimes there are other triggers, some in the brain...sigh...I had labs done today (waiting on results) and am starting prilosec. While I am sure it's something silly, I'd be lying if I said I wasn't just a teensy bit nervous....
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Tresjoli, that's awful about the nausea. One thing that I've developed since chemo is IBS. If I get a stomach virus, that's usually followed up with a bout of IBS. I get awful cramps and gas, especially if I eat the wrong thing (e.g. cabbage). Thankfully, I don't get stomach viruses very often.
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I've been lucky with not getting a lot of nausea Tresjoli32. Fingers crossed it doesn't come my way.
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Beautifully - An echo was done before chemo/herceptin was begun. My LVEF was 56 in late July and dropped to 35 by mid November as determined by a second echo. Never had a MUGA. Herceptin was stopped and I was told that I should never be "callenged" with Herceptin again. Gotta love these medical terms that doctors use - it was a challenge alright! Cardiologist specializing in Herceptin induced heart failure ran other tests, including the catheter up from the groin, through the woods, to grandmother's house and I had no blockage. My last echo showed LVEF was low 50's, which they consider recovered but contine to prescribe lisinopril and carvedilol "to protect my heart" their words, not mine. To date, I have trouble breathing after having bent down as with picking weeds, getting something off the floor, etc. Have done my own research on this one and found something called bendopnea, which is a symptom of heart failure. I intend to bring some of these articles to my next cardio appt. Anyhoo, I'm fed up with huge cancer centers where I was supplied with surgeons, oncologists, cardiologists, neurologists, endocrynologists...one stop shop a doc! I'm changing all doctors, PCP and specialists and am hoping for more individualized care. If you search some of my older posts, you'll see other incidence of, not neglect by my doctors but a determined sticking to a standard of care that might not have been the best care for all. BTW - before cancer, I weighed 125 and hit the gym 4 times a week and now I break the scales at 132, although I did quit the gym rat routine. Sorry for the long post, just wanted to explain what happened.
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Blownaway, that's sounds so frightening and scary all in one. Words can't not even describe. I'm so sorry you went through that. I will be keeping s close eye on myself as I know I will be on the herceptin for a year and needless to say the start of the journey has not been entirely encouraging.
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Blownaway wow, we could so relate to what you going through. That's exactly what happened these last weeks with Dani. For instance she had numbness in her arms, so she gets MRI from Onco, report came back - herniated disk on C6 and T1, she is stage IV extensive bones and other, then recommendation to neuro next door, the guy barely looks at the screen says she needs to see another type of surgeon for surgery.
We went to a 2nd opinion, and RO looks at the screen and says this is not about surgery but it has to be radiated, it's a lesion pushing into the disk. So back to her RO, now she agrees, the report WAS wrong!, Problem is it was already a radiated spot so it will be more difficult.
I try so hard to find docs that have their banners hanging outside, but these days almost all have surrendered to large Centers etc... and it all becomes exactly what you said "acceptable" standard of care, when most of us all need specialized care.
Would anyone here know if someone is just 1%PR - it's still considered triple positive? Would PR make any difference? I did read somewhere that the issue is they just don't know how much PR really means? Because D is ER+ PRweak and Her2+, but being that it's so hard to get to all her lesions, I wonder if they were not paying attention to something.
t
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New here! I started Taxol, Herceptin, Prejeta Feb 6th, Feb 13 I had just TAxol. I will have Taxol weekly for 12 weeks with the Herceptin and Prejeta every 3 weeks. To sum it up..... I feel like crap. And I have broke out in a rash. Finally getting some relief from that and now I am nauseous, I have a med to take but it makes me so tired. I have to try to get some work done first.
It is nice to see that I am not the only one who is getting mouth sores. I thought I was losing my mind. I did not think they would show up so fast. I also feel like my head is crawling. Not sure if that is the start of my hair falling out? I was told by the Education nurse and the Chemo nurse that it would start any day now. I have my wig but still going to be very hard.
I am still up in the air about which mastectomy to have, I was told I would need to have the left one removed for sure. The other one is basically up to me. So many things they throw at you at one time.
Day 3 is the hardest I do agree! I hoped things would be better this week, but I suppose this will be my "norm" for the next 10 weeks. At least you ladies understand!
Sorry for jumping all over in this post!
Shelabela
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shelabela - try holding ice chips in your mouth during the taxane infusion, and also gargling multiple times daily with a water, baking and salt solution, shown below from The American Cancer Society. If the mouth sores do not resolve with this somewhat holistic method, alert your oncologist - they can prescribe Nystatin is the sores are fungal, or Mugard or Caphosol if not. I found I had trouble when I consumed too much citrus, or tomato based products and these may also irritate your stomach and throat the further you go into treatment.
"Rinse your mouth regularly with a solution of water (1 quart), baking soda (1 tsp.), and salt (1 tsp.)"
Also, here is the whole link from ACS that includes what foods to eat, and not eat, to help with mouth sores.
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SpecialK Thank you for the link! I started the gargling this AM. I have found anything carbonated is not good! I plan to get some of the mouth wash I see some talk about.
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hi ,
is it standard to take the steroid ( decadron pills) 1 day prior to chemo? thanks
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kae - yup
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hi all,
i am about to start neoadjuvant chemo tomorrow,TChP, but to my dismay the pharmacy which is contracted by my husband's employer will not pay for the chemo. apparently my Mo's office only does " buy and bill" with regards to chemo drugs and optimum rx,the pharmacy who is a subsidiary of united healthcare,my insurance company does not do that. the pharmacy want to buy the drugs themselves and my MO's office does not do that. i called HR of my husband's hospital where he works and i was told they will appeal tomorrow.i cannot beleive this is happening. the Hr person think it is all a piece s___. she thinks the pharmacy gets discount for the drugs which i was told costs 30k for the first cycle.. i dont know anymore. i am so tored and i feel helpless. i am now on leave from my job amd i dont know when i am able to start chemo. i feel helpless.
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its me again, do i need a lawyer
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Hello, I am new to the group but have been getting treatments since November. My last treatment will be March 2nd - I cannot wait to be done with that part of this journey. I am planning on having a bilateral mastectomy with reconstruction this spring. Plus maintenance Herceptin through November. The worst side effect for me has been diarrhea. The fatigue is no fun, and both of these at work makes for some looong Days! The treatments have been working and my tumor could not be seen on my last ultrasound. I try to keep up a positive attitude though sometimes it's hard when I feel wiped out. I am so looking forward to spring and having some energy!
I just wanted to say hi and I wish everyone the best with their triple positive journey
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kae, mytreatments were denied twice by the same insurance company (my plan changed with the new year but it was the same company, but still they tried to deny) so twice my doctor had to call and argue with them. I was stressed beyond belief but it worked out. I'm sure you will get results with the appeal but it stinks that they put patients through this. You are in my thoughts
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cjs9473,
i am so sad.. i can't believe this is even happening.. my HR dept is appealing tomorrow while my MO will appeal for a different chemo infusion center.. we have the same stats and my MO is raring to get me started.. congrats on your good reaponse so far..
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kae, Hopefully your doctor will get involved in talking to the people who make these decisions ( from what I have heard, they are usually administrators and not someone with much medical knowledge.). I have a couple friends who are oncology nurses and they see this all the time and they say these issues usually get resolved in favor of the patients. Hang in there and try to be positive (I know it's tough). I hate the waiting game, its excruciating sometimes
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