ER-, PR-, Her2+ Roll call
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Robmon - I second ginger for nausea and indigestion. We use fresh ginger in a lot of our meals. I also have ginger tablets that are very portable. Zofran apparently can cause headaches and I am already prone to them. Ginger, ginger tablets, ginger ale have helped.
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RobMon: I didn't do well with the Herceptin (or Perjeta) at 30 minutes. Although it makes a longer day, I insisted on a one hour run rate every time.
My docs put drugs in the line during infusion for nausea. I never needed any other meds for that. But I sure did have diarrhea. Keep some "light day panty liners" on hand. With either vomiting or diarrhea, it's easy to get dehydrated. If she can't get enough liquid down, they can run an extra bag of saline between infusions.
For exhaustion & fatigue - the only answer is to realize it's part of the process. Scale down the activities, take lots of naps and spend time in the recliner reading or watching TV. Let someone else mow the lawn & clean the house for the duration. And maybe cook the meals too. If you do have energy, it's good to stay active doing something like taking walks.
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I'm semi-pro in the chemo realm. Two cancers/Two chemos. For me the key to nausea was don't let it start. So I was vigilant with the anti-emetics for at least the first 36 hours. She should be prepared different things will work at different times. I did have good luck with ginger early in chemo but it stopped working later. I agree with MinusTwo walks especially outside can help maintain energy.
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My MO has brought up the subject of Nerlynx twice. I know the decision is way out-- like December, but I don't see very many - - + folks on it. Is it because we are rare, or is it because it is more effective for hormone + people?
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I never experienced any nausea with chemo or herceptin and perjeta. With every single infusion I received 2 anti nausea meds. My Mo had given me a prescription of an anti-nausea medication but I never once had to use it. As far as the fatigue, speaking only for myself the fatigue was always there. I had to work 6 days a week and take care of six dogs and three cats so I pushed myself. It worked for me. But at the end of a long work day I would come home rest for approximately 15 to 30 minutes and then I would get out of bed and go running. It was never easy but it was something I had to do for myself. It is different for each of us. There are individuals who had such debilitating fatigue they could barely move. Don't forget red blood count and white blood count also plays a role in your fatigue. Both of mine went low but it never reached the point that I needed injections or infusions. Listen to your body. I cannot repeat enough we are all different. If you are extremely exhausted then use that recliner and rest your body. Do not be hard on yourself if you cannot do certain things you did before.
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Mcbaker- my MO doesn’t like that drug because she hasn't had anyone who has been able to tolerate it due to bad SE. she doesn’t use it unless there are no other slternatives
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He says my chances once I complete the Herceptin are the same as those of anyone who has not had a C diagnosis, so I don't see why it is necessary. Except that HER2 is a big nasty.
I could use help in losing 30 pounds.
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MCbaker, here is a figure from the talk that PUMA presented to FDA when they applied for neratinib approval. It seems that the effect of neratinib on hormone negative population is transient-see figure on left below.There is no difference between the percentage of population that is cancer free and is on neratinib or on placebo after two years. In the journal article where they discuss the trial results, they do state that the effect is transient. I am wondering why does your MO recommends it.
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MC Baker - below is a link discussing Nerlynx. Thought you might find it useful.
https://community.breastcancer.org/forum/80/topics...
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DATNY, he has not been recommending it, he has been suggesting it as a topic of discussion. Perhaps testing my research capabilities. LOL. My response is that I need to lose weight.
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Hi all,
I joined the group in June this year (2019). IDC and DCIS, combined about 4 cm, grade 3, - - +. I had my first chemo treatment yesterday of 12. Perjeta, Herceptin and Taxol. So far I've not had any SEs, but am expecting that to change as treatment goes on. Will have some kind of surgery at the end of the neoadjuvant treatment, depending on the outcome. I'm finding it very helpful and cheering to read about how others have managed this journey. Thanks everyone
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dvhmouse- so glad your chemo has started because now there's an end point. This Thread is great because so many people have already been through chemo and h&p so we're here to support you.
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Thank you jo6359
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I was told yesterday that I am half-way through with my Herceptin! I probably ought to celebrate. https://www.amazon.com/dp/B07P8S7K9K/ref=twister_B07D1M3L7Z?_encoding=UTF8&psc=1 ??
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Congratulations MCBaker on making it to the halfway point!!
dvhmouse - I hope your SE are minimal!
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Hi everyone, I am posting for my wife (hope that is alright), who was recently diagnosed with Stage II - HER2+, Er-, Pr-, multicentric breast cancer. As far as they can tell there are at least 5 tumors, with the two largest measuring 2.1cm & 2.5cm. Going to be starting neo-adjuvant TCHP chemo very soon, followed by mastectomy.
Trying to read up and learn as much as possible, but not a lot of information out there about the "multicentric" part of her diagnosis and how it might affect her treatment and her future. If anyone has gone through it, or has links or more information, it would be greatly appreciated.
Also, very curious about hearing from others who have gone through TCHP chemo (6 cycles every 3 weeks) and at what point did side effects start / at their worst / taper off, etc. during the 3 week cycle? Trying to plan my days off work to be with my wife, but since I cant take the entire 4.5 months of chemo treatment off, it would be helpful to know when she might be feeling at her worst, and might need me the most.
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Really sorry for your wife. She will be fine though there is gonna be a tough year ahead. I've been through this almost exactly two years ago. Four or five tumours, only four got biopsied. The largest was 1.9 cm. Plus one positive biopsied node (and numerous other abnormal in MRI). Some IDC some DCIS, some mixed tumours I believe. All gone after 6 infusions of TCHP. I had infusions on Wednesdays. I could work on Thursday without much problems being energized from all the steroids. Friday the fatigue would start, by weekend would be at its worst. By Thursday the following week would have recovered pretty well.
As far as I know multicentric and multifocal has the same outcome as a single tumor.
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I forgot to say that the worst side effect for me was the bone pain from Neulesta. After the first Neulesta shot I changed to Neupogen from which I had little problem. The second worst was acid reflux, but this may have been due to the fact that I did intermittent fasting, and only eat between noon to 4 or 5 PM. Never had nausea from chemo, nor did I take any of the prescriptions they gave me at home for nausea or pain.
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When - sorry your wife has to join us. I needed someone with me when the port was implanted and for the first chemo. After that I drove myself to every infusion and I was 70 years old. I wanted to read or sleep while the drugs worked and didn't want anyone with me. If you wife wants you to drive, my average infusion time was 6-8 hours - so if it's close enough you could drop her off & pick her up at the end of the day.
I had Neulasta shots 24 hours later. I understand there is now an automatic system. But yes, be sure she takes regular Clairetin the day before the infusion and for around 7 days after.
Like DATNY, I felt pretty good with the steroids on board for a couple of days, then I just wanted to sleep. By the third week, she'll probably feel pretty good - but fatigued.
I'm going to find the thread and post about what to prepare for chemo.
Oh, and I drove myself to rads every day for 5 weeks after the surgery. Again - the worst problem was the fatigue. It's all manageable.
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This thread has great tips for chemo. Start at the first page
https://community.breastcancer.org/forum/69/topics...
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When - sorry that your wife has to go through all of this. I had a smaller tumor and it was stage one so I am going through a lesser chemo protocol than DATNY and MinusTwo, just Herceptin and Taxol. I've had some nausea and the steroids keep me up the 2-3 nights after an infusion although a combo of melatonin and CBD oil are helping with that. My only bone pain has been with the neupogen shots - got 3 two weeks ago and getting 5 over the next few days. Claritin has helped with that.
Good luck to your wife on her treatments and here's hoping for minimal SE
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whenbreasts,
I also had multicentric tumors. Ten to be exact. They spanned an area of 10cm. I was classified stage 3 with one positive node. I had to do a mastectomy because of the size of the tumors. I did have a complete response.
I was diagnosed close to five years ago at age 37. Had two children, 7 months and one and a half. I was crushed because I wanted another child. Low and behold, I did not do fertility preservation and last year got pregnant at 40. I now have a beautiful eight month old, a five and six year old.
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Raleighgirl - your story is so inspiring!
I was diagnosed in March right after my 32nd birthday with stage 3 (large tumor with 1 confirmed and 3 additional suspicious nodes).
My son was 20 months old and we were trying for a second at the time of diagnosis. It gives me so much hope to know that you had such a great response to chemo and were able to have a post-treatment baby too!
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iChan,
Keep the faith! I did see a fertility doctor before I tried to get pregnant after treatment and for what it's worth, he told me he wasn't worried about the effects of TCHP in regards to my fertility, just my age! He believes that cocktail didn't affect fertility. He sees many cancer patients and is affiliated with a major teaching institution. He told me to try getting pregnant onmy own and we did!
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Hi everyone , it's so nice to see you all doing great!
My mom was diagnosed in November of 2018 and the imaging showed N2 nodal involvement (er- pr- Her2+)
She first had 4 rounds of AC, then surgery (which showed T2N1, 3/12 nodes , nodes in DCIS) then she had 4 rounds of Taxol+Herceptin then continuing herceptin for an year finishing this February(2020) and she is doing great as of now.
My question being , is it usual for people to have surgery (or atleast , is it not very unusual ?) after 4 rounds of AC ? I see that mostly either people have surgery before or after 8 rounds of AC+TH. Also , now which is the staging that I have to look at for her diagnosis, the one before or at the time of surgery?
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I only had 4 doses of AC but they were dose dense meaning more than if I had done 8 doses. then I had surgery. So you mom probably followed the dose dense protocall.
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Ahh yes , that was the case , but isn't 4 rounds of taxol+ herceptin also given before the surgery ? also can you give me some idea regarding the staging ? do all people here who have received neoadjuvant chemo generally put up their clinical stage or pathological stage ?
Is it generally the residual cancer that they report as node positive? or if they find dead cells during the surgery are the nodes still reported to be postive?
Thanks a lot already!
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Different oncologists choose different neoadjuvant meds. The docs try to get pCR before surgery (complete response). I had 6 rounds of TCHP first and did NOT have a complete response, so the doc scheduled 4 rounds of AC after surgery. I was only able to handle 3 rounds of AC.
I believe the initial diagnosis before starting treatment is the one most commonly used. It can be confirmed with surgery but depends again on pCR. However diagnosis & staging can change down the road with a local recurrence or with METS
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Thanks a lot
I have been following these pages for sometime though I do not post anything , and you guys have given me a lot of hope. Hoping to post more positive stories down the road!
Thanks again
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Adding myself to this list which is now remarkably NINE years old! Grateful for so many inspiring stories, but only on about page 6 of the 66 pages of results... I have just over a month before starting Taxol (12 weeks weekly) + Herceptin (every 3 weeks for a year). Trying to get a sense of what that experience might be like--even knowing that it's different for everyone. Nausea? Fatigue? Neuropathy? Any recommendations for the time between now and then? I've read some of the helpful "Chemo 101" threads, but would find it especially useful to hear from those who have personal experience with this particular regimen, or who could kindly point me to a thread I might haven missed. Trying to keep positive, but that's not my strong suit at any time, let alone now.
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