TRIPLE POSITIVE GROUP
Comments
-
Kate - both chemotherapeutic agents can cause anemia, so eliminating the C may not improve that situation. My experience is in line with what your MO says regarding successive rounds - better control of many SE, but I did have increased fatigue and lower blood counts. Interestingly, the last one, #6, was my easiest in terms of SE, but I was super tired
0 -
Hi everyone here. I have been reading this blog for a while now, finally got some courage and decided to post. I got diagnosed 4 mths back with stage 2 IDC, triple positive. Im 25 years old and although I have learn to accept it, it has been very tough on me and my family. I lost my mother 2 years back to BC as well. BRCA1 and 2 both came back negative as well as 20 other gene tests. Dealing with it a second time has been so painful.
Currently Im doing AC chemo once every 3 weeks as well as the neulasta. The neulasta has given me severe neck and muscle spasms. Its so bad I can't even turn my head. Been suffering since a week. Has anyone had this type of reaction to neulasta? Some days its hard to see the light at the end of the tunnel. It feels so grim and difficult.
All the best to everyone here and whose going through the same.
0 -
SpecialK, that's good news. I can deal with fatigue; it's the digestive stuff and the steroid crazies that did me in for rounds one and two. My next round is a week from today--I'll be 2/3 of the way done, and that feels like cause for celebration. I swear just yesterday I was on this very board, trying to wrap my head around the diagnosis and wondering what was going to happen. Now I know.
lauragirl, welcome. Feel free to join us over at the August chemo board, too (even if you started in September). Ask any questions you have (here or over there)--everyone here is fantastic, not to mention knowledgable.
0 -
Laura - welcome but sorry you are here, and so young - this should not be happening to you. Sorry too about the loss of your mom to BC, it has to be even more scary for you, and I'm sure you are missing her. Are you taking Claritin prior to, and for several days followingyour Neulasta injection?
0 -
Hi KateB79, thank you will join the chemo board for sure.
SpecialK, I miss her too much, it really feels unfair at times
I didn't take claritin, my oncologist didn't inform me to take it. With this reaction so severe I think next one I should definitely take it though. Does it all get easier? Life is just tough.
0 -
hi Lauragirl !
We'll all help you get through this
0 -
lauragirl - I hope it does get better for you, and I get it - lost both my dad and only sibling to stage IV cancer. Take 10mg of Claritin or generic loratidine at least an hour prior to your injection. Continue at 24 hour intervals for at least a few days. A number of ladies here also felt they got good pain relief from Aleve. I also took some hot baths
0 -
Kate, my MO cut my Carbo by a 1/4. It made a difference in cycle 2 and he set the change for cycles 4-6. Hoping it helps again! I started the documentary last night while I had steroid insomnia. Very interesting! No help here on the hot flash issue--anxiety triggers them for me so the hormonal hot flashes will be new territory. I wonder if our bodies will adjust and calm down? Hopefully it is not a permanent side effect. That sounds very reasonable considering my track record with meds.
My nurse SIL and BS are both adamently opposed to a hysterectomy or ooph. My MO says it is a good option. But my husband pointed out the reasons they give are very gender based. SIL and BS are female and feel it is invasive, drastic, and negatively affects womanhood. My male MO says it is easier and cheaper in the long run. I am glad DH pointed that out. But my MO wants me to pursue seeing what changes we can make from my Paxil--my PCP said he would try to consult with the original prescribing psychiatrist (I can't unless I want to self admit myself to the hospital psych ward for a 3-day minimum stay). That psych doc is the best in the area and I really want to see what he says. MO thinks we should try Tamoxifen first before trying hormone suppression with an AI or the hysterectomy plus ?. The other concern is that I could not tolerate hormonal birth control and he is not sure about me tolerating hormone suppression--that's a discussion for my GYN I think. This is so complicated and everyone says I shouldn't bother with it now, but if I am switching anti-anxiety meds we need to start that process in Feb. to make sure I am stable on the right med well before starting Tamoxifen in August.0 -
Musogirl,
Maybe you could find an anti-anxiety med that works well with both Tamoxifen and the AIs so you could have stable meds, regardless of what hormonal therapy you end up taking. When Aromasin made me tearful and moody, my MO prescribed Celexa. It's worked well for me so far.
0 -
I was suicidal on Celexa and ended up on the psych ward for a quick 3 day switcharoo. That is why I am SO hesitant to go making changes. I respond terribly to medication in general...0
-
Kate I had terrible acid reflux/heartburn on chemo starting with the 1st treatment. I too was on protonix but eventually had to add carafate suspension. I never had mine reduced but you might be having more of an issue than I did.
lauragirl My 1st Nuelasta was the worst one but it did get better after a few days. Have you discussed this with your MO?
0 -
Kate, I had very little nausea with Chemo, but horrible acid reflux/ heartburn. Like Lago, I added carafate to my regime which included prevecid morning and evening and zantac at bedtime. All of this helped, but by the 4th chemo it got so bad I couldn't finish my last day dose of the steroids. 5th and 6th Chemo, my MO cut back on the steroid and I finally had more significant relief. It sounds like you're only having 4 infusions though, so not that much more to get through!
0 -
Musogirl,
How awful! My son (who is on the spectrum and has had problems with depression and anxiety) is the same way. He's had paradoxical reactions to Abilify, Risperdal, Seroquel, Prozac (5 mg and 10 mg), Amitriptyline, Clonindine, and Focalin. The only med that hasn't made him crazy is Guanfacine, and that has a modest effect. I wish we could find his version of your Paxil. Best wishes!
0 -
musosgirl, you're bringing something valid to the table, here: how we treat mental health during cancer treatments. From a purely scientific perspective, it seems to me that it's overlooked to a pretty large degree; from an empathetic, human perspective, it seems like more should be done to address it. The good news is that it sounds like your MO is doing what he can. Here's the thing: from what I understand, BC pills and Tamox/hormone suppression are different animals (not quite opposites, but close), so there's no reason to assume that you'll have the same reaction to Tamoxifen as you did to BC pills. That said, have you/your doc investigated tricyclic antidepressants? They're old-school, but they might be worth a try. And, maybe more importantly, do you have a therapist that you trust? I'm sorry if that's a stupid or overly-invasive question; I just can't imagine where I'd be with this without mine.
amylsp and lago, I've actually got three rounds left, for a total of six. So far, the Protonix is working great. My mom has taken Carafate in the past for reflux, and my doc is monitoring what's going on with me. After round 2, it was so bad that it was causing chest pains, and we certainly don't want a trip to cardiac care. This round, I've found that I can eat pretty much whatever I want (thank goodness), but I'm prepared to go back to a bland diet if need be. I'm going to ask if we can reduce the Carboplatin. I don't know why I have it in my head that the Carbo is/was the culprit, since it could just as easily be the Taxotere, Perjeta, or--even more likely--the Decadron (for which I've had every side effect in the book--now I only take 8mg a day for three days with no infusion pre-med, instead of 16mg per day plus a pre-med). . . .
Before all of this, I balked at taking ibuprofen for a headache. Now I feel like I'm swallowing fistfuls of pills! Alas. If it gets me through all six treatments, I'll do it.
Here's a question: did any of you change your diets or start taking supplements after chemo was over, to boost bone marrow or cleanse your bodies? I can't wait to get my strength back (powerlifting); I've lost almost 10 lbs of muscle mass already. I've gone from deadlifting 185 lbs for reps to having a hard time walking two miles. But I guess that's the trade-off for annihilating this bulls*** cancer, isn't it?
I vow, in this semi-public forum, not to worry about the second echocardiogram. I'll get the results next Thursday. I feel about Herceptin/Perjeta the exact opposite as I feel about Carbo: if they're the miracle drugs they're touted to be, I want them at all costs.
Thanks for reading my rambling. Happy Friday, everyone!
0 -
KateB,
I added Caltrate (600 mg Calcium & Vitamin D3) twice a day to my regimen, post-chemo. My baseline dexascan revealed that I already have osteopenia, and my AI will only reduce my bone density as it sucks the estrogen out of my body. Otherwise, I haven't added any other supplements.
0 -
KateB79 I have always eaten pretty healthy. To be honest I think I eat a bit more red meat now than I did before diagnosis. You gotta live. Most important is keep a healthy weight and exercise daily
0 -
kate - once I was past the first 10 days of the big D after every infusion I ate spinach and red meat almost daily trying to keep my hemoglobin high enough. I now follow the Virgin Diet to try to control inflammation so that I get less joint pain and weight gain from hormonal therapy. Like lago, I was always a pretty healthy eater, but I have eliminated a number of things from my diet. I was osteopenic prior to diagnosis (probably equal factors in that were a hyst/ooph at 45 and the typical slight/petite build that develops it) but it worsened after chemo and six months of AI drugs, so I am now on calcium, vitamin D and Prolia injections. This has restored me to normal density. I also take a number of other supplements, mostly letter vitamins and probiotics/fiber.
0 -
lago and SpecialK, duly noted.
Has anyone been following the GP2 vaccine clinical trial saga? How about Neuvax? It looks like there are some promising immunological treatments on the horizon. . . .
0 -
Kate, I have an amazing therapist specialing in trauma/PTSD. She is just a phone-call away, but I am only seeing her the week before my big infusions--partly because the big D keeps me home for 12 days and partly because I just want a good pep talk to get me through the next 3 weeks. Her SO is also going through cancer treament, colin maybe?, and she has two other clients further along on this breast cancer journey so she is full of upbeat info and positive attitude.0
-
Kate - GP2 saga, as in the argument between the maker and Dr People's? I participated in the GP2 trial in Washington DC, and fluff queen did the trial in Wake Forest
0 -
SpecialK, yes, that saga. It looks like the phase III trial is set to go, though, so maybe that blew over. Sadly, I'm not eligible, because I had clean nodes and autoimmune thyroid disease about 15 years back, but I'm hoping the trial looks good enough in a year that more of us can get it! What was your experience with the vaccine? Just a regular vaccine, or was there more to it?
0 -
What is the GP2 vaccine for?0
-
musosgirl - it is a Her2+ recurrence prevention vaccine trial. It is an effort to bring this vaccine, currently given in the trial to patients who have completed treatment, to the market. There is a possibility, if the trials succeed, that thee vaccine could be given concurrently with treatment
Kate - GP2 is combined in the trial with another vaccine AE37 and you are sorted into each arm by tissue type, Like for an organ transplant. Within each arm you are sorted into the vaccine arm or the placebo arm. One of the reasons I participated in this trial was that the placebo arm still consisted of a drug - GM-CSF, an immune booster, similar to Neulasta. I had a very good experience with this trial, well organized and relatively easy - I had no physical issues,but due to the blind aspect I do not know if I received the vaccine or not. The hardest part was the repeated trips to Washington, D.C. - I think I made about 15 flights total
Where are you seeing that phase 3 is imminent? If they start it, it should recruit for a number of years. I believe phase 2 was like 6-7 years. The drug, even if the trials are successful, is years away from being available for use.
0 -
SpecialK, I thought I read yesterday that the phase III trial is almost fully enrolled; of course I can't find the link now, so I can't share it here (I've got to start bookmarking these things). My new search tells me that I may have been mistaken--it looks like Neuvax is the one that's into the phase III testing period. I apologize for sharing bad information. I'd blame it on chemo brain, but I haven't had that problem--I honestly think I just misread the data (I'm not that kind of doctor).
Either way, I wasn't thinking that GP2 would be approved in less than a year (and, frankly, I wouldn't want it to be--these things take time for a reason), but that it might be possible for high-risk women to get it before it's approved, a la the early days of Herceptin. It might be a pipe dream.Phase II Neuvax/Herceptin link: http://www.cancerinsight.com/active/phase-ii-trial...
There are quite a few trials enrolling for more advanced HER2+ BC. Here's a link to a list, for anyone who might be interested: https://www.breastcancertrials.org/bct_nation/brow...
Again, I do apologize for misinterpreting data. That's kind of embarrassing.
0 -
Kate thanks for the info. I still wonder about HER2 treatment and results and when I ask all I am told is there is no way to tell if herceptin did it's job unless you get BC again! No thanks! I have echo on Monday and hope my heart is good and strong. I will have herceptin til July 2016 or that's what's scheduled.
0 -
Gretagirl, we're on a similar schedule. I had my second echo last week (still waiting for results) and, assuming my ticker is ticking in an impressive way, will get Herceptin through next August.
Glad the links were of interest!
0 -
kate - no worries, and the Neuvax trial is very similar - easy to mix up the alphabet soup of GP2 with E75. I believe that they have to fully report out the phase II results before they will enroll phase III for GP2, but because of all the legal issues I am not sure about the phase III status. Phase II just recently ended, so it will be a bit if it happens at all. It would be a shame if they cancelled any further trialing on GP2 because of the promise it shows. My understanding of the FDA process is that once phase III is initiated, that combined with the FDA review process, could take another several years. Since this is recurrence prevention I am not sure they would accelerate since it is not considered treatment per se, but I believe that there is consideration of giving it in the future concurrently with treatment, so who knows?
0 -
Thank you everyone for making me feel welcome
Lago, I discussed it with MO, just got some painkillers but the pain is still there and its been a whole week and half. Think tomorrow I shall see a physio.
Think that neulasta really had a bad effect! Thank you specialK, I'm gonna start claritin before the next one for sure!
0 -
Kate,
The hot flashes will go away after chemo stops, or at least they did for me!! Although I just had an oopherectomy so I am getting them again although not as bad as when I was on chemo:)
Kathy
0 -
Oh, thank god. I was starting to think I was never going to get a good night's sleep again. . . .
0
