TRIPLE POSITIVE GROUP
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Thanks Morrigan,
It’s always good to hear that people respond well to their treatments. This is a wicked disease and I just love to hear when we women win!!!
I hope you’re doing well on your regime and have not been too uncomfortable with it.
I did FEC four years ago and found it pretty easy to do. It shocked me.
Do they know what causes Her2? I read somewhere that it could be linked to diet
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I'm doing pretty good, it's not as awful as I expected. My biggest recurring issues are diarrhea, nosebleeds and some weird mouth thing (dry mouth syndrome?).
I got a prescription this time for the diarrhea and it's working so much better than the immodium. My nosebleeds stopped 2 weeks ago (no idea why) so that's a plus.
Please let us know how your mom makes out and keep strong there are Triple+ can be scary but, there are some really good treatments which level the playing field
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I had terrible dry mouth with Taxotere. Stock up on watermelon and other melons, have them already chopped in containers in the fridge. I lived on watermelon, yogurt and scrambled eggs for days on end. I could not eat anything dry. Everything was dry. Lost a lot of weight because of this.
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thanks laughinggull, I was eating a lot cantaloupe at the start, it was one of the few things that tasted and felt right. I haven't been good on the fresh fruits since the lockdown. Next time I order I will remember to add watermelon and cantaloupe.
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I'm having the same dry mouth issues. It's pretty much the only thing that I'm experiencing outside the tiredness and some acid reflux. Any other suggestions?
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Hi all.
I just received a call that my Herceptin has to be put on hold for at least 6 weeks, as my heart ejection rate has gone down to 41%. It was 61% before I started Herceptin in November 2019. They also want me taking 2 different medications to help it so the Herceptin can continue. I'm set to start radiation soon as well. Just when you think things are working out, I feel like I'm getting kicked back down again.
Does anyone have experience (and hopefully a success) with this?
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wahoomama, what worked for me was stocking up on the things I could eat, and also being very careful with mouth washing, I used warm salt water several times a day. Avoid dry foods, avoid hot, spicy, salty foods, It helped to get organized and plan in advance meals that I could eat, because it was very painful and stressful to be hungry and not being able to eat or drink. Plain yogurt, cold juicy fruit, juices, smoothies, bland scrambled eggs, bland vegetable purees
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Morrigan,
I remember a lady on this forumfour years ago, talking about nosebleeds too. It’s a cesspool of symptoms with this chemo thing.
I’m glad you’re getting through it all though.
How is everyone’s hair doing? Anyone cold capping?
Morrigan I will certainly let you know how mum manages on her first chemo, which is not going to happen until end of next week.
Doll
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@Dolly - I am cold capping, using Dignicap. It's going rather well. I still have most of my hair, it's thinned out and, there is more scalp visible along my part and right in front. I can easily cover it up when I need to (not like I go out) but, I don't think it's that noticeable to others, more something i can focus on.
My nurse said this is the time when shedding slow down. The last few days shedding has been mild so I'm hoping she's right and, I won't lose too much more.
I'll let you know how it ends up. From what I'm told the cold capping works to prevent total hair loss and, helps the hair grow back faster. We'll see how that goes as well. Still a good couple of months before I'll see it filling in but, I can't wait 😁
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I also ate a lot of melon, yogurt, smoothies, milkshakes - things that were cold and went down easy. I had a lot of GI issues - usually for the first 10 days of each TCH cycle. I ate the BRAT diet too, bananas, rice, apples, toast - and that was helpful. Bland foods for the first week, then as much protein as I could ingest, to keep my blood counts high enough to get the next round.
A lot of people with dry mouth issues use the baking soda and salt gargle, and Biotene products, mouth rinse and gum. Hard candies are also a good way to keep your mouth moist. Here is the recipe for the rinse - some make up a bunch and keep it near the bathroom sink with some Dixie cups and it reminds you to use it often.
Ange - there have been a number of people on this thread who have had to stop because of lowered LVEF, and then were able to restart. Hopefully the cardio protective meds will help, and once your LVEF comes up, may provide stability from that point on.
Dolly - Her2 exists in all human bodies, in assorted locations, and when functioning normally it helps cells grow and divide. Unfortunately in about 20% of breast cancer patients the Her2 on the breast cells mutates and causes excessive unregulated growth of tumors. This is not due to diet, it is due to a mutation, and possibly a chromosomal abnormality for some. There are also Her2+ gastric cancers, and Her2 is part of the normal cardiac function. This is why Herceptin can cause problems with the heart pumping mechanism as it can be inhibited by the medication.
I recommend using Aquaphor to help with nosebleeds. I put it on a q-tip and put some up each nostril, then pinched my nose and rubbed it. For me, the cracking and dryness in my nose was causing sudden nosebleeds, the moisturizing with Aquaphor helped.
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"I recommend using Aquaphor to help with nosebleeds. I put it on a q-tip and put some up each nostril, then pinched my nose and rubbed it."
I never thought of that. I bought it for my hands but, I will give that a try
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SpecialK -
The GI issues are killing me this week - it's my first week (I'm on day 6 post chemo). I'm alternately starving and then having everything come out the other end, quickly, if you catch my drift! I can't imagine how I'll leave the house when things start getting back to normal if it doesn't improve this first week. I'm hoping my body will establish some sort of "normalcy" once it gets used to the infusions. Today, I am not having a positive attitude so much!
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wahoomama - keep in mind that you have a multi pronged regimen, and any of those agents can cause the Big D. You received loading doses of all in this first infusion, so for many of us, the first treatment can be among the worst. Also figuring out how you will be affected going forward can be a moving target. I found that I would get one thing under control and a new issue would crop up, lol! Make sure to keep your onc apprised of all side effects, there are many ways to mitigate them. You don't want to get dehydrated because that brings other woes, and extra IV fluids may help you as well. Are you getting an injection of Neulasta or receiving the on-body injector? If you are going in for injection, getting a bag or two of fluids then could be helpful. If Immodium and bland foods are not working, there are some stronger prescription meds that can help also.
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After reading SpecialK's post I realized I also did the baking soda and salt mouthwash, and I had the Biotene mouthwash. And I also second the Aquafor for nostrils.
SpecialK, do you keep notes of what you did back then?
I am two years out and dont remember anything! Glad to see you around. Hope you and your family are doing well.
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laughinggull - I do have the sheets of side effects (I used the ones from the American Cancer Society - will link for others) I used for each infusion. I found those helpful since my SEs tended to vary with each treatment, and I had a hard time tracking unless I wrote it down. I think there are also some phone apps. I have been on this site for a long time so I have written about this stuff repeatedly - helps me remember it, but I think it can go two ways - permanently etched in one's memory because it wasn't that much fun, or dismissed because it wasn't that much fun. I'm thinking dismissed might be the way to go, lol! The fam is doing well, DH is working from home for the most part, going in once a week or so. This has been interesting for me because he works in a military office and much of his work is classified so I have never been around it - I have discovered he talks to himself when reading email! Also, he absolutely can't multi-task. My daughter has been working from home for the last several years, so nothing new for her. My son is a firefighter/paramedic on an Army base in VA, I am glad that is where he is, not out in the community transporting patients to the ER. His roommate is a firefighter/paramedic doing that and they have a very strict protocol for disinfecting, but I worry about both of them. I have not left my house in 30 days - my WBC is below the low end of the range and I am 63 - both risk factors, so I am being really careful, but have been busy making masks for friends and neighbors and working on projects around the house that I am usually too busy running around to tackle! I hope you are doing well too and staying safe.
Newbies - Aquaphor your whole body pretty much....
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I see, you had to have a record. Glad to hear you are all well. I understand your worry about your son. Watching your spouse at work is a revelation. It's an aspect of the person that you don't know until you see it, regardless of how long you have been married. My husband and I had been married 8 years, when he joined the company where I worked -different role and profile. The first meetings we attended together, I was shocked. He was incredibly neat and organized, could handle all these complex deliveries very efficiently. I had never seen that -he was pure sloppiness on all things domestic. That was the end of me tolerating the sloppiness....turning on the rice cooker in the wrong program (computer science engineer claiming not to understand a Sanyo rice cooker), "forgetting" that the garbage needs to go out every day, not knowing how to cook a spaghetti squash (google it!) etc. It was a net loss for him
I go out on evenings for a walk-jog and to do grocery shopping here and there.
Best wishes to everybody. Stay safe. We are so fragile.
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Sugar77 -
Thanks for all that. I am trying to keep track and I will let the oncologist know about the side effects. I hope you are right about the loading dose. There does not seem to be any rhyme or reason to the "Big D" as you call it! It comes and goes. Last night I had the WORST acid reflux right as I was getting ready to eat dinner. Came out of nowhere. I could barely eat because every time I swallowed a bite, I got this huge burning. So I'm calling about that too, today. I need to eat! I'm actually very hungry and want food, so there's that at least. I'm so reluctant to throw any more medication into my already over-medicated system with this chemo. I'm normally the person who takes nothing and uses natural remedies for almost everything. This is very foreign to me.
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wahoomama - do they give you Pepcid when you get your infusions? I started taking that everyday to ward off the reflux and it helped. I’m like you, I hate to take any pills except my vitamins. But I added Pepcid as a daily “vitamin” and it helped. I hope you get some relief. It’s bad enough when you’re fighting that but then to actually want to eat and can’t is just terrible
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I take pepcid every day morning and night at the direction of my oncologist. After round 4 of TCHP, I am still suffering from breakthrough reflux, which I treat with Tums. I hate it. Only other time I've experienced heart burn was pregnancy. Alot of these side effects are like pregnancy
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I had terrible acidic indigestion and grinding stomach pain during chemo, and it helped to take pepcid AC daily but ALSO have Alkaseltzer GOLD (the non-asprin variety, gold box not blue) on hand for breakthrough upset. I usually took it a couple times a day after meals and found it helped quite a bit.
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AngieB92 - they did not give me any Pepcid. I did talk to the nurse navigator yesterday and she suggested that as well, if I continue to have issues. I've actually found that as long as I don't let my stomach get too empty, it's not happening. So I've switched to eating smaller meals every 3 hours or so and that seems to be better. I have a call into the nutritionist at the hospital for a consult, and I'll talk to the doctor on Monday when I go for my mid-cycle lab draw.
Fab4Mom - thanks - I'm definitely going to discuss that with the doctor.
HeartShapedBox - same here. Once during one pregnancy, I had to take something for acid reflux. My digestive system is usually so healthy and great - and this stinks!
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morrigan,
Cold capping was the worst bit of my treatment. I hated it. However, I barely lost any hair and family members were not even aware I was doing chemo!
I only washed hair once every 10 days! Oh my... that was vile. I also used very mild shampoos on my hair. But I still used hair dryer and straighteners. My hair seemed to go very dry on chemo so I also used a Swarzkopf hair treatment. You can get them on amazon and leave in hair for few mins.
I thought cold capping was soooo worth it!
I hope your hair is doing well and staying where it should.
You’re right that it does stop falling out eventually. After my first chemo I had one shedding. Sort of tumbleweed if hair. I sat and cried and then no more came out after that. So I was pretty happy with that!
Doll
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wahoomama same- before chemo I was super regular, NEVER took OTC meds for anything except the occasional advil, great digestion, had never experienced acid reflux in my life. During chemo (initially anyway) I was eating super healthy, organic chicken, rice, mostly veggie-based dairy free, gluten free meals, and I found I just couldn't digest veggies anymore on chemo. Started eating a lot of refined carbs and soda (ugh) which was the only stuff I could tolerate after awhile. Almost cried with joy when I could start eating better again!
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Hi guys,
So we got a call today from oncologist to say my mum has to go in next week for and ultrasound to check her heart is up to chemo.
She has had a Muga scab which was good but mum has mild arterial stenosis.
It was suggested that that might mean no herceptin. But I’m not sure if that means no chemo or perjeta too?
Then as if not bad enough we’re told that mum might just be given some hormonal tablets and sent home into Covid is fine with. I am shocked to hear that this is the state the NHS is in.
Am I being ridiculous?
I have stated clearly that if no chemo then we expect at the very least an operation!
Oncologist called back ten mins later with an appoint for today to get the u/s done.
She is well aware I’m not happy.
Am I right to be so angry???
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Hi Dolly!
Where are you in the UK? Are you close to a Covid-19 hotspot? Also, do you know if your Mom was highly HER2+? Hormone therapy pills are actually very powerful treatments for breast cancer that is highly ER+/PR+. Often times, breast cancer patients who are diagnosed with Stage IV (treatable but not curable) breast cancer begin their treatment with the hormonals. So, being offered the hormonals isn't being offered nothing.
My breast cancer was strongly driven by the overexpression of the HER2+ protein, so I would not have forgone Herceptin if at all possible. However, Herceptin can cause heart damage. My next-door neighbor is triple positive, and she has heart problems. She is very nervous about receiving Herceptin for a year. I can understand her concern; you only have one heart!
You definitely should push for your Mom's surgery, and definitely push for some kind of chemo + Herceptin combo. If your Mom starts chemo + Herceptin, her heart should be monitored very carefully. In the meantime, though, the hormonals might be of some help. Good luck!
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I have GERD and the chemo made it unbearable. I was put on a protonix med and then went back and reviewed my GERD diet restrictions. I had not had a lot of problems with acid reflux before due to meds and had let things back in my diet. During chemo, milk shakes and coke floats tasted so good. They were one of the biggest offenders of acid reflux. The milk and cream are big no no's. Once I cut those out, I had a lot less acid reflux. Frozen yogurt did not hurt me. I was also drinking cran-grape juice - it was one of the few liquids that I could tolerate as far as taste. Again, it was causing the acid reflux. Water is hard on people with GERD - needless to say, dehydration was a real problem for me.
Aquaphor was a wonderful - I still use it. I had skin toxicity on Taxol and used it everyday, several times on my skin. I used on my nose, also. I still use it today.
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"I had skin toxicity on Taxol and used it everyday, several times on my skin. I used on my nose, also. I still use it today."
What do you mean by skin toxicity? I'm on Taxotere and I swear I'm breaking out in a rash or acne or taxotere burn on different parts of my body. My checks are very rosy which makes me think taxotere burn (but they don't hurt like a sunburn), my back has marks on it and my hands are red and spotty like a rash.
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morrigan - are you getting steroids before/during/after your infusion? The Decadron will cause the face to flush in some, it definitely did for me. I have had several steroid treatments, not connected to breast cancer treatment directly, and have gotten the sunburned face look for a few days every time. I did have an allergic skin response to infusions beginning at the half way point. It is hard to be sure what is causing the problem, but I will say that it lessened once the chemo portion was finished, so I am inclined to think it was Taxotere. I had a photosensitive rash on my forearms and hands, and I had body-wide swelling, both of which subsided.
I had GERD long before I was diagnosed with breast cancer, severe enough that I had surgery for it in 1995. I had a Nissen procedure where a portion of my stomach was pulled up from behind and a new gastro-esophageal junction was made from it. Chemo affects everything with a fast cell turnover - hair, nails, skin, and that includes the entire digestive tract since it is covered with a mucosal layer. I recommend watching acidic foods like tomato based sauces, citrus, caffeine, mint, chocolate, alcohol, spices, and fat. Fatty foods tend to slow down the processing of food by the stomach and thus increase the production of acid - or at least prolong it, which can cause problems. I found that cooling fruits and BRAT diet were good for me, but if you are experiencing problems definitely ask your oncologist for some advice with OTC meds like Pepcid, or prescription strength meds if that doesn't cut it. I had Benadryl,Pepcid, Tylenol, and Aloxi as chemo premeds every time, along with steorids. I was able to discontinue those when I moved to Herceptin only, so hopefully once chemo is done you will see those heartburn type symptoms lessen or go away.
dolly - it may be worth a cardiology consult to see if your mom can be put on some cardio protective meds that will allow her to receive chemo/Herceptin. I would suggest discussing avoidance of Adriamycin, and maybe sticking to a taxane based regimen as that seems to be gentler on the heart, and the lowering ejection fraction from Herceptin is not permanent for most. If she can be carefully monitored during treatment, it may be a worthwhile trade-off, but all should be carefully considered. Agree that if systemic treatment needs to be postponed then going ahead with surgery see4ms logical - here is the US that seems to be what some are doing. Cancer surgery has not been deemed elective so far.
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"morrigan - are you getting steroids before/during/after your infusion? The Decadron will cause the face to flush in some, it definitely did for me"
I get Steroids during the infusion but, that's it. My cheeks are rosy after infusion but, I'm almost 2 weeks out, it usually fades by now.
Interestingly my MO does not give me steroids before/after which I don't think is normal most people seem to have take home pills.
I got Benadryl during my 1st infusion and, then a half dose during my 2nd infusion and, that was the last of that. I did notice that my skin issues started with #3 but, I didn't think of the Benadryl until now. I figured it was just a build up from being further into treatment. I will ask about that next week for #5
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morrigan - I got random rashes several times during TCHP. I got the splotchy hands a couple times and rashes on my stomach a couple times. I was getting all the drugs during chemo (benedryl, steroids with my infusion, steroids to take at home, etc) but still got the rashes.
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