TRIPLE POSITIVE GROUP
Comments
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Thank you, all, for your kind remarks. I wish all of us well in our collective and individual journeys.
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thinking about you today HapB...
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HapB - praying your chemo today went well and you have no SE's. Shelabela is right, stay positive and take it one day at a time. We're all in this for the long haul.
Vixie- so sorry you have to be here but this is a great group for support and information. We're all at different stages of our cancer journey and each journey is unique. The first couple of weeks after my diagnosis were terribly overwhelming but after lots of research, questions, tests and finally settling on the right care team I became proactive instead of reactive. Things do get better once you have a treatment plan in place and acceptance to beat this beast no matter what!
Stay strong and good luck with your appointments. Hugs0 -
can anyone who has taken Perjeta talk to me about the diarrhea and how long it lasts? I will have six rounds of tchp over the next 18 weeks. I have had round one and the diarrhea has started. I've been told that this will continue on through the next rounds and possibly after I complete the Perjeta. Also, do you have any suggestions for coping with the diarrhea?
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Hi!
I used Imodium, but sparingly. If I was teaching or would be far from a bathroom, I was sure to take my Imodium. But, if I was working at home, I'd skip it. The problem with Imodium is that if you take it too much, you may become constipated. So, I would schedule in some "cleansing" days when I would just skip it. Hope your diarrhea stops soon!
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How long did you experience the diarrhea?
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My first round of chemo contained a higher (double?) dose of Perjeta. My diarrhea was so bad that I had to get a prescription from my MO -- Imodium wasn't working for me. After round 1 I was able to control it with Imodium. Starting with round 2 I also had constipation. So like ElaineTeresa, I would use Imodium sparingly and if I didn't have to leave the house I would skip it. During rounds 2 - 6 I would alternate between diarrhea/constipation and it was so difficult to guess which would happen next. Sometimes I would take a stool softener daily in case I would become constipated. I would also drink "Smooth Move" tea (recommended by my MO) if I thought I was constipated.
I really had a rough time. Gas-X helped with my "explosive D".
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Hmm,
I would get it on Day #3, and it would last until Day #6. I was on a different regimen, though. I was doing Taxol + Herceptin + Perjeta, while you are taking TC + P. Taxotere is a bit harsher than Taxol. Maybe someone who did TC will have better advice.
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I'm also on Herceptin. I just couldn't get it to post on my profile along with the Perjeta...
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vixie65, welcome. Hang in there. The road is long with many milestones. Luckily someone here can always help with support and information.
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Thank you for your replies and support. I am happy to say my last infusion of herceptin,and therefore my LAST infusion (fingers crossed) is now done ! I don't celebrate with others here but I am happy to report it online to those who can understand ! My lovely nurses who have been great for the past 8 months (changed providers) were not there today, but I will stop by with a card and something sugar free.
Feeling like I can move forward. Still in limbo about doing that AIs but will decide soon (I started and stopped for a vacation, not starting yet again).
Thanks for your information and your sharing. Appreciate it! Ellie.
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Hi Glasgowgirl,
I'm sorry about your delay, I'm sure it adds anxiety as you anticipate just moving forward. I hope your body heals quickly and you are able to do so soon. Let us know. Ellie
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Hi, I did the switch to claritin and it helped me a lot. This is all anecdotal of course, but I had read here that some women on Herceptin regiman got help from taken the Claritin daily ( I did do that during my year, and I feel it helped) and I also heard that slowing drip down to an hour could help decrease some of the aches and pain. All anectodal, But it worked out pretty well from me. So looking forward to the large muscle group aches going away.
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I have had 4 perjeta infusions and luckily did not get any diarrhea. Wish I would help.
Maybe a diet change the days before, id talk to your MO. They should have ideas about how to eat to help.
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I did not have Perjeta as it had not yet been approved when I was treated, but Herceptin and the regular chemo drugs (in my case Taxotere and Carboplatin) can cause the Big D without Perjeta. I had problems for about the first 10 days after each infusion, except for the last, but never severe enough to really medicate very much. I was on leave from work, so had the option of not really going anywhere except to get Neulasta and weekly blood draws, so I just didn't heavily schedule myself for that first week. After that first 7-10 days I was fine and had no more problems until the next infusion. After I was done with chemo I was advised by one of the onc nurses to start a probiotic and I had no problems once I moved to Herceptin only infusions. I did eat bland foods and for that first week mainly ate a BRAT (bananas, rice, apples, toast) diet. I did keep Immodium on hand, but if that does not work for you ask your MO about using Rx lomotil.
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Hap,
How did it go? You ok???
Sending hugs from TNDenise
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Yeah!! Go Hap!
You give me courage to get through mine...
I'm doing what your doing .. having the port put in on Thursday and then my first chemo on Friday ...
Stress could play a big part in that BP ...
I've been on BP meds since I was 30 ... it stays in the normal range .. no problems .. but when I met the MD's two weeks ago ..it was sky high..
I'm scared to death that I'm going to have an allergic reaction ...
The port being sore I think would because it was just put in and then next day folks are messing with it ...
Hang in there ... one down...
Hugs from TN
Denise0 -
My port was sore too but I'm sure glad I had it put in. I also had a very tender shoulder - almost like it had been dislocated and snapped back in. I didn't start chemo for about 10 days so it was healed by then. Thinking of all of you at the beginning of the chemo journey. Keep checking in. I think I've mentioned it before but you might want to check the boards for something like "starting chemo June 2017." My Feb. group has gotten very close. We even set up a private Facebook account.
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HapB Glad to hear things went well. My port was put in and my first treatment next day also. It was tender, but within a few days I almost forgot about it. My second week has gone good, the Claritin really helped with bone pain. #3 coming up next Wednesday.
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i have D with projecta too after each infustion
For 5 days starting day 4
Imodium didn't work so they give me a prescription
Now after infusion#5 my big issue is hemorrhoid
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HapB
My MO suggested the Claritin to me. The first week the bone pain lasted day 3-5. The second week only minor discomfort day 3-4 with the claritin. I have had more issues this week with constipation. Have been taking Miralax twice daily. I have had no pain or numbness from my fort (left side)
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HapB if this doesn't resolve by tomorrow, I would check in with someone. Did they have trouble with infusion? Flush and blood back in tube? At least call and ask some questions.
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HapB,
Definitely call your MO's office if you feel so lousy. There should be someone on call to take questions. Are you able to drink lots of fluids? Sometimes, even if you are drinking lots of fluids, you can end up dehydrated. Either way, MO has an interest in finding ways for you to finish treatment. ((Hugs))
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Hi HapB. It took about 4 to 5 days to recover after my port was placed. I felt like I had been in a boxing match, very stiff and movement was painful. The port has not bothered me since then. I ask for lidocaine spray before the port is accessed. Hope you feel better soon.0
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Hap,
Call your MO ... ... please..
Hugs from TN
Denise0 -
Having a newly installed port and then accessing it shortly after means that it will be sore - this is common. Usually it settles down before the next infusion, but if it is causing you too much discomfort your MO should be able to prescribe something for pain. Be sure to ask for EMLA cream (lidocaine) for use before the next infusion - you put a dollop on about an hour prior and then cover it with plastic wrap to hold it in place. Most centers also have freezing spray - I used both and never felt the access.
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hap - how long ago was it put in - day before first infusion? It is very recent, right? If so, yes, bruising is normal as it is technically a surgical procedure. Because the access for chemo was done so soon afterward the port has been manipulated under the skin and moved around so you may have additional soreness than if it was put in a couple of weeks prior. My port was installed during my mastectomy surgery so by the time I had chemo it was totally healed, but I have seen many people on this site remark about how sore their port was if it was put in just prior to the first infusion. I have encouraged some if chemo is same day, or next day, to have the IR or vascular surgeon access it while it is numb and leave it accessed so the oncology nurses don't have to do it. Time helps - you should not have this type of soreness going forward once you have some healing. If you phone your oncologist, or the on-call, ask if you can use some Arnica cream or gel to help with the bruising.
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hap - only our one member who is on a trial, to my knowledge. I am only aware of one other member on BCO who did forego chemo and do Herceptin only but she progressed and is now stage IV and receiving it with Taxol. Because it is not standard of care, and not yet backed up by studies, you won't see it much. That said, there are a number of stage IV women who have been able to remain NED by staying on Herceptin only over a long period of time (years) after they were done with initial treatment. Are you considering discontinuing the Taxol and staying with the Herceptin only? You might ask your oncologist about a reduced dose - I am not sure if weekly Taxol and Herceptin gets a loading dose (Taxotere with other drugs and Herceptin does) but many patients have somewhat more intense side effects with the first infusion for that reason.
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i am now prepping for surgery next month. i want to take vitamin c but i cannot tolerate the pill.it makes my reflux worse. is there any other vit.c that i can dissolve/dilute except airborne? i dont need the extra stuff in airborne
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Hi Kae. My nutritionist recommended Impact Advanced Recovery by Nestle for a presurgery boost. I found it on Amazon. It seemed easier than trying to load up on various supplements. Just a thought.
I am 5 weeks out from TCHP Number 6 and still completely exhausted. This may be a bit worse due to the minor detour with surgery to remove suspicious bladder lesion complete with stent and followed up with a UTI and antibiotics. I am told this is the normal cumulative effect of the chemo. Has anyone else had a similar experience after their last TCHP?0
