Chemo Starting August 2019
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go mama - frustrating! I do hope they figure a good plan for you soon
In2earth - thanks for sharing the healthy tips. I am gonna try to take in some of it. I really want to find a way to infuse some health/be proactive, while the chemo works on the cancer but drains the healthy me. I also walk and nap daily! I am glad you are faring well.
Angel - you are so attentive to everyone here. Hopefully your neulasta pain gets managed soon. I had minimal pain from it; will see after next one.
Hair shedding as of yesterday. Freaking out just a little Makes it all even more real.
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Thanks GoMama!
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Santabarbar and In2earth - sorry to perseverate, but: how do you know what supplements to take? I see you are taking several. I am interested in L glutamine and a probiotic (bloated stomach) . I did get the book Life over Cancer, but feel a bit overwhelmed.
In2 earth, I see you are taking quite a few "supplements."
Thanks!
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I had a consult with the author of that book, Dr Keith Block. I also had a consult with a Naturopathic Physician in my town who has a practice helping cancer patients and used her for support. They told me VERY similar advice. I think it's important to get advice specific to your cancer and your treatment program from someone who is experienced and knowledgeable.
Some good ones to investigate (that I am taking): Omega 3 deep sea fish oil, curcumin, quercetin, D3, selenium, Calcium D Glucarate, E, C, Rose Hips, EGCG (Green tea active ingredient), berberine, Indol 3 Carbinol (cabbage active ingredient), Alpha Lipoic Acid, Resveratrol, Ginger, Ubiquinol, Melatonin (20 mg /same time at night.... work up to it), and metformin (500 x 2). I am not sure if a different Tx or Dx would make any of these contraindicated. Its wise to check.
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Hey Flowerkid,
I graduated in 2017 as a holistic nutrition consultant so we briefly touched on cancer in my studies, but since then I have just studied every book, website, and documentary I can get my hands on. I also talk with other cancer survivors and I met with a traditional chinese medicine doctor in NYC mentioned in the book Radical Remission. My acupuncturist recommend some eating habits / supplements as well, but most everything is just self educated research
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Hi OnTarget, I got a burn/rash following Taxotere after my second cycle (I am in the July group). It appeared about 6 days after chemo. My oncologist said it was from the chemo and very common. Mine was very itchy, red, and blistered. I got relief from the itchiness when the blisters broke. The two pictures below were 3 days apart and situated where the IV was. It didn't happen during my third cycle.
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Thank you both very much. I have two friends to ask about their naturopathic doctors. Will take it from there (and keep reading!)
Oops one more: am I supposed to let my regular oncologist know about every other thing i take?
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I did. And I told him it came from another MO who was experienced in that area. He was more tolerant than supportie at first, but then I did really well and it opened his mind.
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Fairydragonfly- That is sort of what mine looks like! I have a red oval shape coming out of where the needle was, and then a trailing line going to the inside of my elbow. I guess I will tell the nurse about it.
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OnTarget - glad the picture helped. You got this!
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Hey @Flowerkid, every appointment my nurse goes over any supplements / medications and changes so that is when I let them know what I'm taking.
Also wondering for anyone premenopause if they have experienced losing their period. I have missed mine now around 15 days, they said it's normal, but very strange. I find I'm super cranky right now & have crazy sugar cravings. Fun times!
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in2earth - I haven't had any since starting chemo on July 5.
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in2earth - Sadly, my period showed last week. Right around the time I was feeling halfway normal. I had an IUD for about 1.5 years that was removed in early August. This period was the heaviest I can recall having in years, however oddly I didn't have the cramps that usually accompany my periods. I was hoping to file into the window of chemopause. I suppose it could still happen.
I'm too scared to try all the supplements. The MO gave me a huge list of No no's as far as supplements that interfere with chemo, melatonin being one of them, which I was taking for sleep. So I try to bare minimum it to deal with side effects for now. I'm on day 5 post infusion, and feeling much better this round than last round. The fatigue and aches are still present, but I can function much better this time around. Just wish I could taste food.
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My regular MO was on the anti-supplements side of the fence (though his worst indictments of them were more "unsettled questions" than actual dangers.... but he has become a convert watching me. Last month at my one year checkup he said "I'm certain those integrative practices helped you." I had very invasive/advanced TNBC - 3C by today's rubric. And I got a pCR-- taking a boatload of supplements the whole way, as well as doing interval training, HBOC, hyperthermia, high dose C, and many other integrative practices.
Your MO (like mine) knows what has been proved or disproved by a double blind clinical trial, and that's what he recommends. OK. But the integrative MO I got a consult with has been using high dose C IVs and many other supplements/ antioxidants in his clinical practice alongside normal chemo for 30 years, and so he has a ton of clinical experience with the benefits of supplements that our MOs do not have. Nobody is getting rich on high dose C, so it never gets an appropriate clinical trial. That does not mean it isn't a potent anticancer therapy.
My POV was if something was not demonstrated as "bad" and might be good without doing me harm, I wanted to try it. At the outset, I had 30% odds of being alive in 3-5 years. I wanted every possible 2% assist. I realize some specific chemo drugs may contraindicate some specific supplements, but a blanket "no" to all is too simplistic.
Melatonin is specifically being recognized for it's strong anti-cancer properties. I think you deserve a second opinion from someone whose specialization is natural (naturopathic physician) and who is experienced in nutritional support for a cancer patient.
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In2earth - I not only had my period (and I would look at the end of my period as one of the rare silver linings, as I am 48 and ready to be done with it!) but i had enough spotting to warrant a trip to the gyn. but I head it is very normal to skip it even after first chemo.
Autumn gal - I am also scared of supplements, but I hate the toxins (usually anti meds, high fructose corn syrup, food coloring etc - but now Gatorade is one of my best friends) and feel like there has to be something I can do to help, something to improve the part of my health that the chemo is damaging. Some control. So I will attempt to find a naturopath because I am scared to do it alone. Not that I have spare money to pay someone, but, I will try. And by the way, I am also triple positive , but also taking perjeta and a much bigger tumor .
Santabarbarian - always thanks for all the info and encouragement that there are some positive complementary options...
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In2Earth- I actually had TWO periods during my first 3 week chemo cycle (talk about adding insult to injury!) I'm typically a VERY regular 26 day cycle. I've been having a lot of mild hot flashes and night sweats this cycle though, so I'm curious about "chemopause" myself. But it can't be that abnormal to be pumped full of toxic chemicals and have some resulting hormonal/ period changes in either direction, right?
@Autumngal- your MO's stance on supplements is telling if they said no to melatonin; my MO had no issues with me continuing to use it, and to quote Memorial Sloan Kettering cancer center (after a quick Google search on the topic), "Clinical trials evaluating melatonin as a monotherapy or in combination with other agents and in patients with solid tumors suggest improvements in quality of life and survival time" and "A meta-analyses suggests melatonin may help reduce incidence of some chemotherapy side effects including thrombocytopenia, asthenia, and neurotoxicity" In fact, women that are naturally low in melatonin are MORE prone to developing breast cancer, and it has mild anti-estrogenic effects for us hormone-positive women:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC54032...
I'm fortunate enough to live in a pretty "crunchy" city, and my MO specifically recommended a natropathic oncologist as complementary therapy when he learned I had an interest in natural therapies. I agree with santabarbarian that a second opinion may be in order, and may help you feel more comfortable with trying things that could help! Drs aren't gods- they only know what they know, and unfortunately many of them are biased agaisnt supplemental therapies simply because they lack the personal education and experience. But if you're NOT experiencing troubling side side effects that could benefit from supplements, and feel more comfortable playing it safe and following your DR's advice, then that's the best choice for you!
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Ugh chemopause isn't fun at all, I feel so emotional about my body. I feel really bloated & I ate so much icecream yesterday LOL it was like a world record or something. I have gained 8-10lbs since this all started and even though 90% has been healthy food it's been getting to me.
It sounds like having your period(s) is just as difficult. I guess none of this can be predictied & we'll just have to see what happens as we go!
As for supplements, my MO hasn't told me to stop taking anything, he only was completely aganist fasting before chemo. So I didn't end up fasting, but just restricting calories.
I think with all the damage we are doing to our cells with chemo, they need to be supported with nutrients, vitamins, and minerals. If we are not able to get these from our diet & they are being rapidly depleted then we have to get them somewhere.
It's also worth meeting with the hospital nutritionist
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So despite, using clindmycin gel and hydrocortisone cream for several days, the itchy, sore folliculitis on my scalp rages on. Saw a dermatologist this morning. He took a culture just to make sure that we aren't dealing with a more serious bacteria. Now going on oral doxycycline for 10 days. Hoping it doesn't make me nauseous. Doctor said it should start clearing in 3-4 days. Can't wait!
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Autumngal24, I have been using melatonin for several years, and my MO said to keep taking it and increase the dose to 10 mg if necessary (I take 5). I'd double-check that, sleep is so important to healing.
On a related note, I was looking for foods high in tryptophan (post-turkey-dinner-nap substance) and found chia seeds are VERY high in it. I have started adding a teaspoon to my daily smoothies or to yogurt. I don't know if it's helping, as my oncology PA had me halve the steroid pill Rx, but I definitely slept better this cycle. Chia seeds also are high in fiber, antioxidants, calcium, and omega-3 fatty acids; 2T is a daily dose.
https://nutritiondata.self.com/facts/nut-and-seed-...
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doxycycline has anti cancer benefits - so that's a good one! Therapeutic dose of melatonin is 20mg, same time, & bedroom must be dark. You work up to 20 slowly...
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Good to know, santabarbarian!
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So I haven't thrown up from my first round of chemo, but ate bad food last night and it's been coming out of both ends! Crazy! And means my second chemo session which was for today is postponed. Hopefully tomorrow. See how I feel. A bit frustrated.
Trying to decide if I should shave my hair. It stated coming out last Friday.
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Sorry Flowerkid! It sucks that something you ate caused it! Ugh!
Hope you feel better tomorrow!
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I was diagnosed with triple negative breast cancer in August and started my chemo in mid August. Every other week AC for four weeks followed by every other week taxol for four weeks. I just had my third treatment last Friday Of AC and I'm having a hard time dealing with it. The mental changes, dizziness, leg pain, depression All of it. Each treatment seems worse than the last and this one has been particularly bad. Does anyone have any advice on how to get through it with sanity? I was able to work my off week last two treatments but I am having trouble getting back to work this time which could be feeding into the depression piece of it. Looking for any coping mechanisms..
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@Figment - I’m so sorry to hear you’re having a rough time. I’m not sure I have any advice but I totally understand your feelings. My third AC is next Monday and I’m dreading it. These past 2 weeks have been rough for me because I have a chest cold that won’t go away. I went on antibiotics on Monday but still feel crappy which I’m sure doesn’t help chemo SE’s. Honestly Xanax has been helping me stay calm and not get so worked up when my mind starts to wander. I’m also trying acupuncture tomorrow as I’ve heard it helps as well. Stay strong - only 1 AC left.
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Figment: So sorry to hear you are having a rough time. Chemo sucks!
I had a rough time but making myself get up and go to work each day, gave me a goal. I didn't miss a day during AC except infusion days. I started out walking the four blocks each way but near the end of the 3rd infusion, I had to Uber. Some days I only could stay 2-3 hours but at least I got there.
I am crediting the goal of getting out of the apartment along with my complementary treatments, for getting me through these. I did hypnotherapy, acupuncture and counseling. I admit that I've had more down days with Taxol but my diet is bad now and I ended hypnosis. Have you tried alternatives treatments? We all have to experiment with different things that can ease the discomfort.
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Figment: I think chemo is simply harsh on everyone’s system. I am sorry that you are having a bad time. I have some lorazepam available to me in the rough times to deal with the emotional aspects of the disease and treatment. I freaked out on Monday when my WBCs were too low to go for my chemo scheduled on Tuesday, to the point where my anxiety was out of control due to worry. If you have the chance to take something for the anxiety or depression please don’t feel bad doing so. If relaxation techniques or exercise help youthen try that if the other SEs will let you.
I agree with Kamboka that having a daily goal is a good thing and it can really help with a sense of accomplishment. I feel like like this disease and the treatment takes so much away from us that setting goals/achieving small victories goes a long way to helping our psyche. Good luck and sending hugs.
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Agree with everyone about taking something if needs be. I was having great anxiety and finally got convinced to take (half) Ativan when necessary. Definitely helped. Also for me, picking up the phone and calling someone at very difficult moments. Sometimes a friend and sometimes peer support through various organizations,. I have a long road ahead of me, seeking all sorts of coping mechanisms.
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I'm cleared for TC #3 this Tuesday and I just want to track my SE's from TC#2.
My head hair appears to other people to be fine (thank you cold capping), but I have some big bald spots in the front which are concealed by the higher up hairs. I didn't wash it for the last two weeks, but I washed it last night. I don't think I lost a ton of hairs, but those bald spots are getting bare. I'm not sure if I'll eventually need to buzz it or not, but I'm so happy with the amount of hair the cold capping is saving. I'm 6 weeks in with the appearance of a full head of hair.
I started having foot cramps and the nurse told me to try magnesium, so I'll be doing that. Nothing like a foot cramp to make you jump out of bed!!
I haven't been on Ovarian Suppression since starting chemo, and my hot flashes are actually reduced a bit. My sleep is still interrupted, but I don't think they are as bad as before.
My mouth didn't feel burned after TC #2, and my sense of taste is coming back. I still can't taste milder things as well, but I couldn't taste them at all before, so better.
I have a thin 2.5" long rash from the chemo injection. The nurse told me to do something about it, but I forget because it isn't bothering me. I'm planning to ignore it.
I felt exhausted and had a low grade fever from day 2-5ish after TC#2, but I feel fine now.
My hands and feet, which I freeze the heck out of during chemo are fine. My nails are normal, and no neuropathy.
I didn't have any nausea with TC #2, but I did have constipation. My gastro doc wants me to start Miralax a day or two before chemo in order to help with that.
That's it! I only have 2 more TC's to go and I'm excited to get them done!!
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Hey everyone,
Sorry to hear about some side effects yall are experiencing
I'm getting nervous for my first Taxol coming up due to the need to ice the hands / feet and mouth. I just had my 4th AC 2 days ago and today I'm feeling really gross from the steroids and just really sleepy / upset stomach. Hoping it goes away quickly. I'm virtually alone during these days and sometimes that makes it harder, but beside that I should be okay.
Anyone else counting down the days until treatmenat is over ? Only 4 more sessions for me. I never thought I would get this far, hooray
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