August 2015 Chemo Group
Comments
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DeeRatz, sorry to hear You're feeling so down. I'm glad the baking helped a bit, at least for awhile. Hugs.
Interesting to read about the mushrooms that help fight breast cancer. I'll have to investigate. What are the recommendations for taking vitamin D? I've been taking that and my probiotic. B vitamins make me queasy.
I had my second infusion yesterday, and if this one is like last, tomorrow I'll start to feel funky. I also got a script for Ativan to fight the Decameron SE. I agree that the jittery, sleeplessness it caused was harder on me than anything else.
Love to all!
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Meant to write turkey tail, not mushrooms. Also decadron. Need to preview, but the dog on my lap Makes typing difficult!0
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Officially bald. *sniff
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I'm also wondering if we can take vit D during chemo. Anyone's doc say it's okay? My bloodwork showed I dropped under 30 (30-100 is good for whatever measurement they take). I know recent studies are showing the importance of vit D for non-recurrance of cancer, but I can't seem to bring mine up. I'm out in the sun (not too much these days), so I guess I need to eat more fish and eggs. I want to take a supplement, too.
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Here's the one I take. Got my vitamin d level to 98 from 50. Supposedly better absorbed under the tongue because it goes directly into the bloodstream as opposed to going through the digestive system. My Mo who is strictly by the book had no issue with me taking it. When I got it measured the second time I got it to 86 and she was very happy.
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My MO required Vitamin D during chemo.
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I tell ya this gave me a whole new definition of "drying my hair"!
I showed this photo to my husband and he said it was vaguely disconcerting ... I have to agree ... It's very strange to see my hair detached from me! Anyway,these little puppies are going off to Chemo Diva by mail tomorrow! Then they'll be coming back to me wearable. Wow. I might just have as many colors in my hair as Tom Snyder did! LOL (obscure Saturday Night Live reference, holla if you were around in the 70s ...)
Oh and this is me sans most of my hair ... ironically none of what's left seems inclined to fall out yet!
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@ksusan and @italychick, thanks for the vitamin d recommendation. I'll have to ask about that since it was part of my multi that I'm not allowed to take anymore.
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Has anyone's doctor mention what come after you finish with the Chemo? like test, MRI, scans, things like that? I had all my appointments lined up since the beginning, to the last chemo, but nothing beyond that, so I am wondering
The only thing I know is Tamoxifen afterward. Also to think about doing the BRCA - since the genetic counselor couldn't find anything in the family history & me being young, so there's higher chance there's some mutations....
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I take 5000IU of vitamin D a day. It's fat-soluble, so I try to take it with a meal that contains a little bit of fat (usually dinner). My vitamin D levels always test in the middle-normal range. I live pretty far north, though, and I've read that latitude has a lot to do with it (i.e., one should take less D if she lives in Florida than she should if she lives in Maine or Michigan).
My MO has said no to the turkey tail for now, but she wants be to bring literature to my next appointment--she's less dogmatic about supplements than many. I've downloaded a bunch of stuff, including an NIH report about how well it works with Herceptin, to take with me next week. Hoping she gives me the green light, if not now, at least while I'm on Herceptin-only infusions until next September. I am allowed to take CoQ10, though, which is good--it's cardio-protective and also good for the gums (I find that irritated gums are one of my SEs for a few days), so I'll be taking 100mg twice a day as soon as it comes in the mail.
Superius, all I know is that I'm to have another echo in November and then every three months while I'm on Herceptin. I'll be on Tamoxifen for 5-10 years (onc is leaning to 10 if I can tolerate it). Beyond that, she tries to avoid unnecessary scans, so I'm not sure if there will be any baseline PET scans or MRIs. I've asked for a baseline brain MRI, but my insurance company, true to form, doesn't seem to want to cover it. . . . Oh, I'll also have a mammogram (3D) every six months on my healthy breast, once chemo is done. We're still working on genetic testing. My doc says that HER2+ breast cancer usually isn't caused by BRCA, so we're trying to get my insurance company to cover a larger genetic panel. Beyond that, I think the next step might be meeting with a PS for recon, though I'm almost certain I'm not going to have recon. . . . I'm a weightlifter, so I don't want them cutting my pectoral muscles for an implant, and the flap surgeries scare me for their length and complexity. But I'm getting way, way ahead of myself, here.
I'm also finding that I have chemo dread. A week from today, I'll be back in the chair, and can look forward to feeling like utter s*** for a few days (as I've said, days 5-8 are my worst--I think it could correspond with nadir). Like you, Carolyn62, the decadron is really, really hard on me--I swear it causes more problems than the chemo. On the other hand, if it's preventing such things as pulmonary edema, I suppose it's worth it.
mom2aboy, you look great! And look at all that hair! You'll have to post pics when you get your hairpieces back!
DeeRatz, I'm sorry you're feeling down. I think it goes with the territory, and it sounds like you have a lot on your plate. My therapist keeps saying that it's important to find little things to look forward to, small fun things that occur within a week or so. I've found this to be really helpful. For example, this weekend we're going to see a band we like at a local club, and I think it'll be fun to do something out of the ordinary. I hope you feel better soon!
musosgirl, you're so right about "thinking differently." I've never in my life had my perspective shift as much as it has in these last two months; it's really quite incredible, and honestly it's mostly a positive thing. I find that I have more patience. More compassion. A greater sense of presence in my life. I also feel isolated and lonely sometimes, but that usually passes. I think the trick is to talk to other people in the same (or similar) situation, if that makes sense.
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@Mom2aboy, Gorgeous!
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Morning all,
I'm two weeks out from chemo #2 and feeling a little discouraged. I've been beyond fatigued since day 4. I've had horrible heartburn for the past week, which last night turned into relentless vomiting. I'm already taking Prilosec. And I've had diarrhea since the first infusion a month ago.
I am so grateful that I'm receiving the treatment I am, but just want a few days of normal each month. I'm starting to think I'm asking too much. I've been so upbeat since my diagnosis, through the hair loss, job loss. But this officially sucks.
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Bluefrog, I'm really sorry to hear that, and I totally understand the TCHP heartburn leading to nausea, the fatigue, and the statement that "this officially sucks." Have you called your doctor? Maybe there's something that can be done. . .
As for the fatigue: I've read studies on American Ginseng and how helpful it can be. I have my doc's approval to take it, and I'm going to start back up tomorrow, well in advance of infusion #3. Maybe something to check out?
Sending good vibes your way.
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Thanks for the vit D info. I'm going to go look for a liquid one today!
I'm having a few SE, but pretty mild after treatment #2. Anyone get foliculitis (little red bumps on scalp)? I kept my hair for 30 DAYS (!) then my scalp got irritated after TC #2, got the bumps, and it starting coming out like crazy. Fortunately, I did not have any infection, but I got some antibiotic cream just in case. The doc said it will happen after #3 and #4 since this is how my body responds...oh joy. Did anyone else get foliculitis, inflamed hair folicules on the scalp? Oh, the doc said some people get in in their armpits, legs, privates or wherever there is hair. Yikes! All of a sudden the scalp seems not so bad.
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gooseberry on that delicate subject (sore bum with bleeding), I had it for a bit. The nurse told me to wash gently after number 2s and 'keep soft'. It all settled down! It doesn't mean you're infected.
Hugs to those who are posting about feeling down. If we're the 'August cohort' we must all be in the middle of the poison right now.
We are strong, positive women (plus any men lurkers), we will get through this.
I too have no idea what happens at the end apart from a glass of something decent.
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Today is a new day and I think MsBrompton hit the nail on the head. We are all in the midst of the same poison all at the same time. Feeling blue(which has thankfully lifted for me today), in the midst of crappy side effects. To be honest I feel physically better this treatment than the first one. I was emotionally better last one. One thing I did change was my diet. I pretty much cut out any foods that are gassy. That made a huge difference for me in regards to heartburn and naseau. Last time I was eating Gas X like tic tacs and having terrible stomach pains and heartburn. I do not receive the immune boosting shot that lots of you are on in the States. If I were to develop a fever they would give it to me next round. So far I have been good. They do have me on prophylactic antibiotics. I start them on day 5 and take them for a week. I have upped my yogurt consumption and am taking a probiotic once a day to try and keep my GI tract happy and help to prevent any yeast from taking over. So far I have been successful.
We are all strong women....we got this....we can do this.....I tell myself, I am halfway done. I have 2 treatments left. I am happy to not be alone, to have all of you to share the struggles with. This too shall pass.....0 -
Hi 5 DeeRatz!
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Amen, MsBrompton and DeeRatz. You nailed it.
So glad we're all in this together.
After next Thursday, I'll be halfway done with chemo and, I hope, with feeling like crap 1/3 of the time.
Best to remember the 2/3 of the time, I suppose.
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I had infusion #3 today. The steroid kept me awake all night, and I woke up tired, wired, and nauseated. Once I finally got in the chair and they got fluids going I was able to sleep for a few hours. In the past six weeks I have either been on my period or spotting in some fashion for all but about 10 days. My MO said it's because I am 35 and have strong (evil) ovaries that are fighting back. He really does think it will stop. I don't believe him yet.
What I thought was neuropathy is hand and foot syndrome--the burning sensation differentiates it. He said it will come and go, and honestly it has been better the past few days, but I am supposed to tell him if the burning gets worse/severe. On a good note all I had to do was ask and he put in a standing order for me to get 1 full liter of fluids every week! I love him!
I have noticed red spots on my head during my steroid days. But between the never ending diahrrea and bleeding I have given it little thought. I am living on Gas-X as well but since I am hardly eating and working to take in fluids, maybe sneak in some protein, I'll just stay with the pills.
As for Vitamin D, they recently changed the range and when I saw my OBGYN and he found the lump he also found my vit D was in the new toxic level. I had been too low for years and out of the blue, literally within 6 months, I was so high I was toxic! I was told no supplements for three months and then to come back in to get tested, but I completely forget two weeks ago... I was going through my bad week and who cares what your vit D level is when you can't get 20 feet from your bathroom during the day?! The only supplement I take, other than melatonin if that counts, is a probiotic in pill form--when I remember. I know I should probably do more, but with PTSD meds and chemo SE meds, and chemo BRAIN, I am doing good to remember those. And that's what my MO has approved so far.
I really want to do a brain MRI, but have not worked up the courage to ask for it yet. I need the peace of mind so I can kick cancer's butt and focus on my two boys for the next 10, 20, 40 years. Since my (evil) ovaries prevented me from having the 4 kids I had dreamed of I am fighting to live long enough to snuggle grandbabies. And THAT is at least 15 years away--it better be!0 -
sloan - I'm on the same regime as you are and I just shaved my head about 4 days ago. I just finished round 2 and I've noticed I have a lot of red bumps and itchiness on my scalp. It's also very painful to touch in some places, so I think I have foliculitus too. Did you get anything to treat it? It's driving me nuts!
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Hi all, so sorry some of you are hitting rough patches. I too had bad heartburn for a few days there - I don't know why, but the last couple of days it's been better. Tomorrow is weekly infusion #5, and hubby and son are both going with me on the trip this time. Son wanted to know if he could come and sit with me during treatment. I said he could, I hope he doesn't find it scary. (I don't think I'll let him come back to see me until I'm all hooked up, though - I'm pretty sure seeing me get the needle would bother him a lot because he's very needle-phobic himself.
Oh speaking of needles, I thought my Leukine shot was infected but it turned out to be just a skin reaction, like hives. It's still not better and I have to do a second shot day after tomorrow! I'm envisioning my whole belly covered in blotchy hives, but I suppose I prefer having white blood cells to the alternative. (I got an accidental scratch from my sharp-clawed dog today - I don't want stuff like that to pose a serious danger to my health!)
I am wavering on the whole idea of not telling my parents. Even though they have short term memory loss, I am feeling like this is something they deserve to know - even if I don't share the details. So my chemo diva wig is more like a strange experiment than a necessity. (And I don't even know if my hair is going to completely fall out yet.) I just have to tell them in such a way that they don't panic and that I can keep short and sweet.
One more interesting development, after having a couple of days of nausea, I bought a set of Sea Bands, which work by acupressure on the inner wrist. It may be a placebo effect but it seems to have worked. Just thought I'd pass that on.
Once more, unto the chemo breach ...
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Bluefrog, I love your 10-year-old's comment! My kids seem oblivious, but then again they're mostly grown up. My 21-year-old daughter didn't like the shark skin feel of the tiny bit of stubble, but now that I've used a razor again, she's willing to stroke my head. I'm sorry you're feeling blue…but it's totally understandable, considering your symptoms.(((hugs)))
Here's a (poor quality cell phone) photo of me with two of my daughters. Check out my head.
Kate, I hate that feeling of dread. I try to be positive as well, but it's difficult not to borrow trouble. My mom encourages me not to worry, but that's like trying not to think of the enormous cancer elephant in the corner of the room.
Mom2ABoy, I love your short haircut!
superius, after my AC and then THP chemo, I have radiation for 6 weeks. I will continue Herceptin (and possibly Perjeta) for up to a year, having an echo done every 3 months. After all that, I'll take Femara daily for 10 years, as well as zoledronic acid (to help strengthen my bones) every 6 months for 3 years after radiation is complete. In addition, I plan on having PET scans every 6 months for at least two years after the date of diagnosis. After that, I will likely move to CT scans.
Re: supplements, my MO wants me to avoid them all until my treatment is complete, after which I can concern myself with issues relating to recurrence. I believe his thinking is that I shouldn't do anything diet-wise to ward off cancer since, right now, we want the cancer to be as active as it wants to be while the meds are coursing through my system. Post-treatment, it's another story. With that in mind, I've focused on a healthy regular diet, sunshine every day if possible for a 30-minute walk, and lots of liquids, but nothing else.
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JenPam- you look awesome.
Holy Heartburn...... That's what I was saying at midnight when I woke up. I took some Melatonin before bed.....I won't be doing that again. That was the only different thing I did and it gave me terrible heartburn. I don't know if this helps anyone but I definitely won't be using that again.0 -
KateB79 & JenPam Thanks. I will talk to my MO next week before the last round TC. It's more my friend worrying about it... He's like the biggest worry wart in the world & I had to explain to him Chemo is like Pac Man going through blood stream eating up any bad cells that broke away. I think I remember her saying mammogram every 6 months. I'm kind lucky that I don't have to deal with separate insurance entity, everything related to the diagnosis is covered.
KateB79 Like you, I also don't know about Recon. I am a musician, so I'm pretty good with my postures. And if I am ok with it & no one else see my battle scar, why bother. the PS sounds much scarier than anything else... How does everyone else come to that decision of Recon or not?
Mom2ABoy You have more hair in one bundle that I have/ had on my entire head... Though I was told I might get more when it grows back. Yes!
I have been feeling more tired this round (#3). Always have to catch my breath & rest in between doing things. Totally NOT looking forward to the more of that after the last round TC #4 on 9/28) -- even though I really want to get this over with (& get the annoying picc out of my arm!).
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Hi ladies - had round #3 on Monday with steroids cut in half this time. The good news was I got sleep! I was pretty happy about that but i definitely felt worse tummy wise and just overall energy. I am wondering if the trade off for lack of sleep is worth the yucky feeling I had all week. I got through the work week but I definitely wasn't a happy camper.
I still shouldn't complain. I have been lucky so far with minimal side effects. I just want this to be over! One more round in Oct.
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socalgirl - the doc gave me an oral antibiotic for 7 days and clindamycin gel to put on. They didn't want it to become an infection.
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Hi everyone,
I had a hard week recovering from AC #3. Last dose I got an infected hair follicle in my armpit so the antibiotic they gave me this week caused me to start getting a lovely vag yeast infection. It seems like it's always something.
Also had horrible withdrawal symptoms from Ativan. Everything I've read says this can be highly addictive and cause reverse withdrawal symptoms- anxiety, insomnia- and I definitely had it. Dr said nothing about this and I will not take it again. Seriously scary. Anyone else experience this?
I'm getting so tired of being so debilitated by chemo. I can't do much of anything. Seeing therapist for first time tomorrow. Definitely need some help mentally.
Wishing everyone a good weekend. Reading your posts is a gift. Thank you
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Jennifer46, discontinuation syndrome from Ativan is awful! It was the worst withdrawl I have ever experienced from an anti-anxiety med. But it WILL end. I asked my MO not to give it to me, but did not list it as an allergy. Klonopin is gentler for me, but I would not recommend a Benzo if you have continuing anxiety. An SSRI or SNRI is much safer, even though they are normally prescribed for depression. Paxil has been the right fit for me, but it has bad withdrawl symptoms as well--I am on it for the long haul with my PTSD so I am not too concerned. Talk to a psychiatrist about these meds. And therapy is truly the best thing--BUT make sure you connect well with your therapist.0
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Jennifer46,
I take Xanax now, wich really helpes. I had a terrible anxiety before and panic attacks.
And same thing with antibiotics , I had yeast infection. Called to make an appointment with my gynecologist, but couldn't wait 10 days to go there, so I bought in pharmacy Monistat 3. By the time of appointment everything was gone.
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Jennifer46, I'm too scared of Ativan to take it, but I know I'd take it if there were no other options. Please take good care of yourself & know that you'll be feeling better soon. (((hugs)))
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