TRIPLE POSITIVE GROUP
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Thank you morrigon_25. That’s relieving to know. My sister had a 6cm tumour, intertwined in her nerve bundle against the back of her chest. She had copious radiotherapy and chemotherapy, no surgery, and she has been cancer free for 14 yrs.
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Hallo Group! Thought I would come on here since I had my yearly check-up the other day. It was all clear. I have been doing ok since 2017. Thought it would be a positive note this day of spring. I got my first vaccine shot - Pfizer - and hope that will not mess anything up.
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Question for those who did TCH or TCHP, did anyone else not lose all their hair? I'm 4/6 cycles in and still have a fuzz. My taxotere was reduced 20% after the second cycle, maybe that is why? I also had to take an extra week before my 4th cycle and all my chin hair grew back 🙃
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Hi Redcanoe!
I had the exact same reaction under TCHP. I never completely lost my hair and had the same hair as you do in the above pic. Mine was even thinner! I’m not sure if they adjusted the Taxotere near the end of my chemo, but I definitely never lost all my hair, just some thinning of the eyebrows.
The best part is when it starts growing in! Mine came back full of curls that I always wanted and even the hair color I used to dye my hair to at a younger age. It is so fulfilling to me to be able to play with and comb my hair. You will get there too! Oh, and the hair that starts growing back is so soft, it’s just so cozy to run your hands through your new hair
Warm Hugs,
Phoenix
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Kattis!
So happy to hear that you are still all clear and that you're doing well! I got the Pfizer vaccine, too. After both shots, the only thing I noticed was that my arm was a little sore in the area of the shot.
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msmurphy - yay!
kattis - hi! Good to see you! I have had both Pfizer injections on the advice of my MO - I was a tad reluctant because I am allergic to so many medications. I had almost zero reaction to the first injection, but the second was a doozy - I was down for a couple of days, but worth it to provide the protection for myself and others.
I had the same hair situation on TCH - never lost it all, no dose reductions, didn't lose all brows or lashes either.
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Hello everyone - I was happy that I was done 6 rounds of TCHP and I would just be on Herceptin. But today when I went for round 7, they added Perjeta! I had been struggling with diarrhea already and Perjeta appears to be famous for this.
For those who had been on Perjeta and Herceptin after 6 rounds of TCHP - could you please share your experiences? We're you able to complete the 11 rounds? What were your side effects? Did it affect your hair regrowth? Did you have to drop Perjeta? How was your experiences with HP vs TCHP?
Please let me know so that I can prepare for it. Thanks!
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Hi hopeful2020 - I just completed my 5th HP on Tuesday. I do get diarrhea but just for a day or so after treatment. My MO suggested taking Imodium before treatment and that seems to help. I take lomotil for subsequent bouts. I usually am tired the day after and take Tylenol for headache. I just take it easy and relax most of the day. The efffects have not been cumulative for me, so I’m back to my normal self after a day or two. My hair growth is slower than before BC, but it’s growing back. Most of my SE seem to be from letrozole. Best of luck with your treatment.
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Thanks Nsbrown54. That helps. I had diarrhea end of day yesterday after infusion which has never happened in the 6 rounds of TCHP on day 1. I am not sure how I am going to make it through 11 more rounds at this rate.i hope it settles down as I really don't want to take immodium all the time. How have your day's been with TCHP vs HP?
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hopeful2020 - After TCHP treatments, I had to go in for extra IV fluids 3-4 days after treatment, sometimes weekly as I got to later rounds of treatment. I had vomiting and diarrhea for 5-7 days after. Some days I could barely get out of bed. With HP, so far I’ve only had a day or two of diarrhea. No nausea or vomiting. I drink Gatorade and water throughout the day to stay hydrated I’m much more active and my blood work has improved. A little tired for a day or two, but much easier for me than TCHP treatment.
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Thank you so much NsBrown and JavaJana. This is very helpful. When my MO said not everyone will tolerate Perjeta for a year my heart almost sank thinking of all that I would have to endure for her to stop. Hopefully it won't be too bad. I do feel better after my first HP yesterday without the TC. I would be so bloated and uncomfortable after TCHP. I do notice I have bad diarhea with meat and fish. Need to stay vegetarian.
Hope I continue to improve and I can have my hair back soon! My Hb was 8.6 borderline yesterday. Anything to try to get the RBC and Hb back up? WBC with Neulasta on last round didn't go to the usual 7s and stayed at 4.5 and Mg low at 1.3. I have gotten 3 Mg infusions so far.
How long does it take to normalize the blood counts?
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Hi hopeful2020 - my last TCHP was mid-October. I have other preexisting health conditions that I’m dealing with and am 66 years old. I don’t bounce back as quickly as I did when I was younger. 🙂
It was about 3 months for some of blood levels to return to normal and for me to feel up to becoming more active. From what I’ve read, it can take up to a year to feel back to normal after chemo is completed. Everyone responds differently. My RBC and HG are still a bit low. Nothing really alarming. I’m sure it has to do with my diet, which is very restricted.I had trouble with my potassium and magnesium levels. Potassium is back to normal and my magnesium is improving. I get magnesium Infusions when I go for HP and take 250mg magnesium oxide every day, per my MOs recommendation.
Does your oncology center have a nutritionist on staff? They might be able to make some diet recommendations to help with improving your blood counts
My hair is growing back, slower than I’d like. I’ve been taking pictures monthly and definitely see that it’s coming along. I’m still wearing caps when I’m out and about, mostly because my head gets cold.
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Hopeful- I had perjeta for my all of my infusions (including TCH) and made it through all of the HP infusions with minimal diarrhea. I did have lomotil for diarrhea during my rounds of TCHP and that seemed to help, but the further I got out from my last TC infusion the less digestive issues I seemed to have. I hope the same for you
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Thank you for responding NsBrown and ajminn. Good to know that Perjeta isn't as bad as I thought it would be. Immodium helps with diarrhea and haven't had to move to Lomotil yet. Definitely have to watch what I eat. Yes there is a nutritionist on staff. I will contact her about the blood count. Thanks for the idea.
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hopeful - protein is what will encourage your RBC and hemoglobin to rebound. Try the usual sources if you can - meats/poultry/fish, but also Greek yogurt, nuts and nut butters, eggs, fortified cereals are good sources. For surgical healing 100g is optional, and in reality you are "healing" your blood counts. Time is your friend in this, it took about six months or more for my counts to come up. I had five surgeries prior to chemo and a couple during the Herceptin only phase so that made it a bit more challenging for my counts.
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Thank you SpecialK. I seem to be getting better with meat now vs before when it was hard to digest. I am so tired of eggs already. That was all I could eat during the 6 rounds of chemo. I hope the counts and Hb come back up soon. Always cold and tired. 🙄
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hopeful2020,
You may never eat eggs again after chemo. I no longer eat some of the foods that helped me through chemo. They just bring bad memories.
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Yes ElaineTherese.. so true.
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How do you deal with the mental side effects? I'm having a really hard time. When I found out the cancer was in my lymph nodes in December, I fell into a pretty serious depression. Couldn't stop crying, lost 15 pounds from not eating. My doctor put me on Lexapro and I started to feel like myself again. I have been very good about taking my antidepressant but I am back to crying every day. I am also going through a divorce after finding out my husband, who I dated/was married to for 15 years was cheating on me the whole time and had another child. I was not healed from that when I found the cancer. Now he has a new girlfriend and he introduced the kids right away and she met my inlaws on the weekend. I'm just so broken down. My self esteem was so low after finding out the infidelity, now I am bald and one breast is bigger and higher up than the other, I'm missing a nipple too. Sounds like I can't have reconstruction for two years. I'm crying so much. I think I have to talk to my chemo nurses about it when I go in tomorrow.
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Hi redcanoe!
I'm sorry to read about your situation. Maybe, you could up the Lexapro a little? Since it has already been helpful, maybe a higher dose might help. My son's psychiatrist always says, "Start low, go slow." We've been fine-tuning his meds for four years, and sometimes, raising the dose of a med has helped. Also, yes, talk to your chemo nurses. They may know of a counselor who specializes in breast cancer patients. It also might help to talk to someone who understands what it is like to be bald and to have uneven boobs. Are there any support groups in town? No one looks great, going through chemo. But, chemo will end and your hair will grow back. I pray it gets better for you. ((Hugs))
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Hi Redcanoe - I’m sorry to hear that your dealing with multiple issues while getting through your treatment. Does your oncology center have social services available? Some centers have group activities as well as psychologists available to help. I hope your oncology nurse is able to help.
We have services available through the oncology center. I’ve been walking everyday now that the weather is nice, but was still dealing with anxiety. I recently started meditation (headspace app on iPhone) and will be trying Reiki therapy next week.Sending you healing vibes and gentle hugs.
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I've been connected with a few people but everyone is 15+ years older than me, happily married and didn't do chemo. I feel very alone as a young adult with cancer in this community. I live in a city with 20k people. Honestly the divorce is worse than the cancer but the cancer makes it 10x more painful.
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redcanoe - your diagnosis is mine, and your treatment as well - hoping that my presence here ten years out provides you some reassurance that you will get through the cancer part. I fully understand how the physical manifestations can rock your confidence - I struggled with reconstruction complications that left me at times with one flat side for many months, it is not fun, and I get it. If it helps try to think of your situation with your divorce as a separate issue from your cancer - try not to link them in your mind as sadness about one can create more sadness about the other and it becomes a spiral. Also, try not to allow your soon-to-be ex-husband's poor decision making and lack of responsibility or fidelity to have any reflection on you - that is on him. Don't give his bad behavior the space to sap your limited reserves. His lack of sensitivity about the timing of his introduction of the new girlfriend to your children and in-laws just adds to his asshat credentials, sheesh. I am so sorry that these things are happening simultaneously with your treatment, which is hard enough under the best of circumstances. Being a parent takes so much energy while going through treatment so free time is likely at a premium, but mindfulness and meditation can be helpful in focusing your limited emotional and physical resources to carry you through this hard time. Right after chemo I participated in a study about stress hormones and coping that was based on MBSR (Mindfulness Based Stress Reduction) and the book by Jon Kabat-Zinn, Full Catastrophe Living. What I learned was helpful in allowing me to live in the moment and not looking back at the past with regrets or looking forward to the future with uncertainty, which somehow made things easier once I got the hang of it. If you Google the author you can learn about this concept and it might be helpful for you. If you can't muster the energy I understand that too - just know we care. Wishing you the best.
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Redcanoe, I'm so sorry this is happening to you. I would suggest you call your doc who prescribed the lexapro and let them know you are feeling depressed again. It sounds like you may need to up your dose but do that with your doctor's help. As Elaine said, the operative is 'go low, go slow'. I had to have my prozac upped several times. You are in my thoughts.
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SpecialK- thank you for this. I do feel encouraged every time I see your signature. My confidence has taken a major blow and I'm sorry that happened to you too. It's nice to hear that it gets better with time. I will look that author up.
Cowgirl- it's hard to separate my feelings between the cancer and the divorce. I went on Lexapro when I was an anxious mess about my diagnosis. I lost almost 20 pounds in less than a month. This feels different, more like situational and im trying to work through my feelings before upping my dose. I'm in a negative thought loop. I talked with my oncology social worker for a good hour today. I will consider it if I'm still crying daily in a month or if I stop eating again.
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Redcanoe - sending hugs. You have been handed a full plate but as Special K says, he's the jerk. I suggest you also look for the group of younger women on this site who communicate regularly if you can't find an in- person support group. Take all the help you are offered - whether doing some childcare, some shopping, or a stop for the beverage of your choice. Trust the older women. Your peer group are probably freaking out and don't know how to help - that isn't your responsibility but it's probably happening, making you feel more alone. As you have noticed, many of us use or have used medical help to handle life. I'm so glad you feel you can talk to the social worker.
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Hi Redcanoe
You are absolutely not alone in having cancer in your nodes....I also had a whole bunch of it, even after chemo, and with plenty of extra ominous signs to boot. It would be great to have clear nodes and enjoy the thought of a better prognosis...but it is what it is. You are also not alone on suffering from depressive moods after diagnosis. My cancer was found in my nodes from the start and I was convinced that it had spread and I would be dead in months. My kids (twins) were 10 years old, now about to turn 14. I lost 10 or 15 pounds in short order after diagnosis, because I was incapable of eating due to anxiety. I was put in antidepressants by the oncologist. Down the road, when I finished treatment and was in a better place, I talked to a psychiatrist (specialized in oncology) about the treatment, and we made a plan to wean off the antidepressant. He also recommended meditation and I joined a meditation group for cancer patients run by the hospital, and I am still in that group. Meditation is life changing. Do you have family and friends you can relay on to support you?
Re your husband, the wise SpecialK has spoken. I second every word she said about him and about everything. What the father of your children did reflects on him, not on you. He will continue to be in your life as the father of your kids, but clearly you don't need a partner like him. Good luck to her new girlfriend! If your in-laws aren't embarrassed to death at the moment by the son they raised, they can't be normal people.
Re looks after surgery, I had a first mastectomy, then reconstruction was delayed like 9 months during which I was very lopsided and nipple-less on one side. Then I had a second mastectomy and again lopsided for a while. Then nipple-less for like a year on both sides. Now I have fake nipples -tattoos- on my fake boobs. My boobs are visibly fake, very noticeable when I am naked, and I am naked around other people a bit because I am a swimmer and....showers and locker rooms. I am now used to the sight of me naked with my fake boobs and all the scars, and I couldn't feel better about myself and how I look. The people who really love you don't give a F about your boobs being uneven after going through cancer. With four kids you clearly have a lot to live for. You can live without boobs.
One day at a time!
LaughingGull
PS incidentally I stumbled today on Kate Bowler's podcast, which this week is about how we lack the language to console people going through divorce. You may want to give it a listen. Kate has stage IV cancer, she was diagnosed at 36, and she has a young kid. I recommend her podcast. The podcast is named "Everything happens"
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Another note: social workers are not experts on psychiatric medication. Which doctor put you on Lexapro? In my case, my oncologist put me on the antidepressant, which I was thankful for. But I am also glad that down the road I was able to talk to a psychiatrist about it. If you are still suffering, you may consider asking to talk to a psychiatrist. They know when and how you need to up or down your dose and when to change the medication. They are the experts. That's their domain.
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Hello, all,
I had a check-in with my MO yesterday, and she said my last Herceptin/Perjeta treatment would be in July, at the one-year mark from when my treatment began. I missed one dose of HP back in December when I had a bad bout of mouth sores and they didn't want to pile on, and at that time I was told they'd just add the treatment on at the end, so I assumed I'd have one more treatment in August. I know HP is supposed to be given for one year and for not more than 18 cycles. I'll end up having 17 cycles if we don't tack the one I missed onto the end. My MO says that's fine and I'll be done in July because that will be a year. Does that seem fine? Should I push for the 18th cycle? I would assume that studies have indicated that 18 cycles is optimal, but maybe one year is really what matters? But, like, what if I'd missed two? Surely at some point they'd want to make sure I made up what I'd missed, so I just don't really understand why they don't just do the maximum number of cycles. Is it an insurance thing?Anyone else have clarity on this?
Thanks
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Hi Anna, based on the studies comparing 6 months to 12 months, I'm sure the benefit of that last dose is really negligible. It doesn't seem unreasonable to skip it but I also think it's reasonable to ask to have that last dose.
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