Starting chemo January 2018
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Hey Roxie! Welcome to the land of the runny nose. Yep, your nose is undoubtedly hairless too.
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It must mean that the chemo is working, like Laura said
XO
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Well I guess most of us are having the runny nose problem. I wasn't sure if I was coming down with something or not.
My port has bothered me since day 1 to. Plus it's located in a bad spot right where the bra strap goes which doesn't help. I'm starting to get use to having the one strap down my arm so which took a few days. I kept wanting to pull it back up. My surgery also isn't the best in healing. I have to take gabapentin now 2x a day for the nerve shooting pain. So I totally understand Amelia.
For some reason chocolate works for me. Shakes, pudding, ice cream doesn't seem to matter. I might have to try the smoothies since I'm sure are better for you. I do drink a boost everyday to try to help and I avoid spicy foods. Funny how the last few days before the next cycle food isn't as bad then we start over.
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Hello, ladies:))
today is day 6 after my chemo. my hair is unbearably itchy, forehead and neck are covered in absolutely outrageous acne that is also very itchy.
determined that my energy level goes down drastically from 11am till 4pm.( took 2 naps today.) feel good in the mornings and evenings- so that's a bonus. also yesterday i got constipated, sent my hubby to get the laxatives recommended by oncologist(senokot).took a pill last night - it helped, but took another pill tonight too. i have always been regular,so this constipation business throws me off lol. it's funny my line of defense to eat more. i think maybe more food will start moving things along lol.
also my tongue starts to feel a bit sensitive as if i have over ate pineapple. rinsing with Biotene mouthwash(which is very gentle, but now it burns too), and started to gurgle with salt and soda mix.
and off topic: today my 2 y.o. daughter and I made a blue fluffy slime. it was a great fun! those of you who have little ones, try it - won't regret it:))
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does anybody know when is the lowest blood count. read somewhere its days 7-14. i thought it supposed to be the first week right after chemo.
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Today was day 6, and in some ways it was worse than day 5. I've gone from severe constipation to constant, painful diarrhea. Was running a low grade fever, but my doctor advised that my white count should still be ok at this point. Just took an extra Benadryl in the hopes of getting some sleep. Anyone else struggling like I am?
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“nadir” - the lowest day of wbc is around day 13
I ended up with 800 and a night in the hospital for observation. I had a fever for 4’days and a raging toothache. When it rains it pours.
MO says she won’t give Neulasta as a norm (fine with me) and won’t test wbc unless there is another issue. She figures most people won’t even have any issues and then they’ll go up.
Laying low and not licking handrails will be my plan.
Princess Buttercup- so sorry to read you are plagued with intestinal issues:(
Everyone should be taking massive probiotics! I think the strongest ones are VSL #3 or udo’s choice makes a nice complete one with 8 strands.
Take one every morning on an empty stomach.
The gi tract needs to be build back up with healthy flora.
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Amelia01- do you mind me asking were are you located? just curious;) Im from Ukraine originally, now in Canada. and so very happy (as one can be), that cancer hit me here and not at home!
I don't take probiotics, but big on fermented foods, like kiefer, sauerkraut, kambucha, etc.
im awake since 5 am with a weird back pain that comes and goes in waves, but when it comes it's like an electrical current going through my lower back that takes my breath away. it seems that it's lower than kidneys, closer to pelvic bones. have any body experienced this?
checked my temp and BP-blood pressure is a bit lower but not temp.
as difficult/annoying/ painful all these chemo symptoms are, i am having fun tracking them.
EDIT to add: apparently its the Neupogen induced back spasms. they are like contractions. so they started after my 5th injection. never ending surprizes.
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olesya- I live in Milan, Italy but am from the US. I always question whether or not it would be better to do tx at home and not here but on the flip side I know that for certain aspects Europe could be better (big pharma isnt as powerful here so it seems).
Can you find a naturopath to help with aches and pains? Maybe your treatment center has some integrative medicine options (even acupuncture?)
My best friend has booked a ticket to come visit me. I told her not to come. I’m horrified at anyone seeing me. I really don’t want anyone to know. I’m ASHAMED! Does anyone else feel this way?
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Amelia - i am totally opposite: not ashamed and sharing with people. kind of looking forward to see my bold appearance:))
also now that cancer is on my radar i find more and more people who have/has cancer. to be honest its unbelievable how many people are affected by this disease.
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Olesya - I had lower back pain cca days 3-6. The chemo nurse told me that the hip joints is where most of the action (production of white cells or whatever it is that is produced) is happening after the Neulasta so I guess it makes sense. I took Tylenol 3 to manage, though and then switched to Tylenol Extra Strength. I figure this is not a good time to be a hero and ride out the pain.
Amelia - I was ashamed of telling people at first. And when I did, I got some strange reactions (people who disappeared, people who asked me what caused it - which is possibly the dumbest thing to ask a cancer patient, people who pretended to offer help - like my MIL who offered to lend me their old hair clippers for, you know, when I lose my hair). In my pre-cancer life, I had more patience with all these characters, now I just dismiss them altogether. And for the most part, people have been quite kind and gracious. Not that I asked for anything. Long story short - I tell everyone. It's nothing to be ashamed of and a good way to eliminate toxic people in your life.
And now - off skiing. Me and my runny nose. Should be interesting!:)
Take ❤!
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Hi all! I had my second treatment Friday, and it was way less scary because I knew/know what to expect. My mouth tastes terrible and I feel a bit out of sorts, but ok. I had some hot flashes last night. I also feel weepy, but I'm a crybaby, so I think I'm just being myself! So far chemo is not nearly as terrible as I thought it would be, but I would like to just state for the record that I really wish I didn't have to do this, and that this wasn't happening to me. Thanks for letting me write that down.
Oh, and I've told everyone I have cancer, and so far that has actually worked out really well. For the most part I've gotten a ton of love and support, and I feel like my vulnerability is being met with vulnerability and love. People don't always know what to say or do, but neither do I. Figuring out how to take care of each other has been really profound.
Hang in there, friends! We're doing this thing, even when it sucks!
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Amelia - I wouldn't say I am ashamed, but I really don't leave the house right now. I think once the hair is all the way gone it might be a lot easier to throw the wig on or a scarf. Right now it's really short which was a shock but it is falling out everywhere so I'm not comfortable leaving with this happening. Besides those little hairs itch. lol
Olesya - I still can't figure out the timeline of when its bad to be around people. I was told to stay away from crowds after a week for a few days. What is a few days?
Just hoping this Wednesday is a better cycle. My MO is changing the drugs so he thinks it will be.
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Hello to the January 2018 crew. I am from the Starting Chemo June 2017 thread. However, I have also just started additional treatment so I'm technically part of January 2018, too. Thought I would share some of my experience with you. Sorry if this is a bit long.
My story: Had a mammo in Dec 2016 with an "all clear" result. I then felt a lump in my left breast at 3:00. I had an ultrasound followed by a needle biopsy which resulted in a IDC ER+/PR+ HER2- cancer diagnosis in April 2017. My ki67 was 19. After an MRI showed an additional suspicious area in the 5:00 area and a sketchy lymph node a biopsy found that both of them were positive as well. Nothing suspicious found on the right side.
Neoadjuvant chemo: I underwent dose dense ACT (Taxol) starting June 2017 followed by a unilateral mastectomy in November 2017. I had a tissue expander placed at the time. I plan to get a silicone implant.
Results: I had some residual cancer left in the breast but it had shrunk. I had my sentinel nodes removed during the mastectomy and 4/4 nodes came back negative so I had a complete pathological response to chemo in the nodes.
The radiation decision: Because I had a node positive at diagnosis but negative after chemo, the medical field questions whether or not radiation is required after mastectomy. Current standard of care says positive lymph node means radiation. There are clinical trials underway now to determine whether the risk/side effects of radiation outweigh the benefit when nodes turn negative. https://clinicaltrials.gov/ct2/show/NCT01872975 This trial is hoping to spare women from unnecessary radiation. Earlier, smaller studies have been promising but the medical field needs the data/evidence from a large study to change the standard of care in practice. In the coming years you may read an article saying they have the data they need to do this--hopefully!
It was hard to work through. I mean I want to throw everything at this, but I don't want to overtreat and have a lifetime of side effects from that. Radiation on the left side concerned me especially after the strong chemo I already had. I still need my heart and lung. Classic scenario of whether the cure is worse than the disease at some point. After much agonizing, I decided to enroll in the clinical trial and was randomized into the arm that does not receive radiation. My radiologist was encouraging and I felt okay with this path. I hope at the very least it results in saving other women from having to agonize over the decision.
As you all know, this diagnosis can quickly change directions. This is the hardest part for me. I'm fine having a plan -even a difficult plan- and checking off the boxes to get to the end, but when the boxes get changed unexpectedly, I get flustered. That and the "everybody's different" response to what side effects to expect makes me bonkers. I just want to scream "Just tell me what to expect and I'll deal with it!" We know that's not how this disease or the treatment of it rolls. Grrrrr.
New diagnosis: It turns out that testing after my mastectomy returned a HER2+ result for one of my tumors. I had noticed on the path report that they were sending a sample for FISH testing so I thought it might be possible but it was still a punch in the gut to get the news. Additional treatment is required. I know it's good they tested and found this out so I can get it treated rather than having it go unnoticed but still...
So, here I am - starting a short course of chemo (CMF) along with Herceptin and Perjeta. The first 4 infusions are a combo and then the CMF will drop and I'll continue the Herceptin and Perjeta for a year. I decided to have a port inserted for this since it is a much longer timeframe and I no longer want them poking my left side due to the lymph node removal. I had my first infusion on Thurs Jan 25 and will continue every 3 weeks. I am firmly pulling up my big girl pants and vowing to keep moving forward.
My experiences from first round of chemo in June:
I tolerated ACT fairly well. I did take Claritin because I was getting the Neulasta shot. I had some bone discomfort but not too terrible. Moving definitely helped. It's hard to want to get moving when you hurt but it does help. My pain was mostly in the "big bones" hips/thigh.
Nausea/indigestion: I had some 'burping' issues but no real nausea. Food was blah but I managed to eat. No mouth sores. I did chew on ice during AC infusions and rinsed with Biotene to keep my mouth lubricated.
Bathroom stuff: I experienced constipation. Colace did nothing for me. Senokot was not much better. What I found that worked was Smooth Move tea. I would have a cup before bed and normally the next morning, things were moving along without a lot of cramping or discomfort.
Neuropathy I iced my hands and feet during Taxol. I experienced some neuropathy in my feet (middle toes basically felt like one big toe that tingled) and just a little bit in my fingers. Both have since resolved. (last Taxol was Sept 2017)
Chemo brain/Stability: I definitely felt a bit off for the first couple of days. Not bad, but not myself. Sometimes I felt a bit shaky and sometimes a bit foggy. I think the shakes/buzz were more from the steroids.
Hair: I was told my hair would fall out quickly around the second infusion and they were right. I did cut it short and then buzzed it. It just got too messy. I worked during chemo so I did opt to get a wig. I spent a good amount of money on a human hair wig. I'd say a fair amount of people did not realize I was wearing a wig. They thought I changed my style a bit. It was Summer and it was hot. And because it was human hair, it responded to humidity. Ugh. No fair having bad hair days when you have no hair. I welcomed not wearing it at home and on the weekends. I have not worn the wig since Nov 17 - last day of work before my surgery.
I lost my eyelashes and eyebrows. Both have come back. I fill in the eyebrows but I'm light-haired so they needed that anyway. For eyes - I used Refresh lubricating eye drops to keep them moist and help flush any irritants.
Nails I used OPI Nail Envy on my nails during chemo. I'm not sure this is why my nails did not fall off. There was some discoloration and white lines but they did not break or fall off. I did keep them trimmed short. I am noticing now that my toe nails are a bit brittle and break very easily. I just started putting some nail envy on them again. I did start taking Biotin after chemo and noticed a "thickening" of my nails. They feel sturdy.
Pneumonitis this was my one "major issue" during chemo. I developed a fever but they could not determine the origin. I had no other symptoms other than I kept spiking a fever. I had nothing on my skin that looked infected. I had a chest xray - clear. A few days later I had a second chest xray - clear. I finally had a CT scan and that showed the pneumonitis. This is just inflammation of the lungs which can be a side effect of chemo but when it presents with a fever, they feel it's due to a bacterial infection. Once I got antibiotics, I was fine in a day. It was a frustrating 10 days getting to the diagnosis, though.
I wish you all well as you start your chemo and hope you find support in these forums like I did and still do.
I have grown to accept "everybody's different" but think we can all learn from each other's experiences.
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For those of you just losing your hair. It is traumatic. For me, it was the only side effect the doctor said would definitely occur. Nobody was different when it came to hair loss on AC chemo so I was better prepared mentally when it happened. As I moved farther along in treatment, I cared less and less about my hair. It was just one of those boxes that got checked.
Here are some photos of my hair journey.
July 2017 - the buzz
The work wig
Wraps for the weekends:
Jan 2018 - 4 months since last Taxol
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Thank you for sharing your story, PeachyJeanne, and your pictures. If I thought I looked so pretty with a buzz cut, I wouldn’t hesitate getting one. But I’m not so sure, and I continue to be in denial. Even though I’m starting to shed big time, I just don’t have the balls to buzz my hair. Am I the only one?
I cut it short already (it was already relatively short anyway), and I’ll wait for it to fall out, unless the shedding becomes too much of a nuisance.
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Peachy you look fab. I'm struggling after just one week of TC. SE have been intense bone pain, all-over muscle aches, ear pain, prickly stings all over my skin, nausea, constipation and diarrhea (alternating), chest pain, and low-grade fever. I think I slept one hour, at most, last night. I hope someone out there can tell me when this will get better. Follow up appointment tomorrow morning.
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edit:NOT herceptin - neupogen.
my taste buds went numb, or how call it DUMB!:) appetite is still good, but almost no taste:)
and,boy!, these NEUPOGEN spasms! give me a brake! It's like being in early labor all over again. took claritin - yet to see the effect. using ice pack seems to help a bit.
PeachyJeanne - thank you for sharing your story! love the pink weekend wrap!
PrincessButtercup - hope you feel better soon!
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Had my first chemo treatment (Taxol/Herceptin) 1/25. Have 11 more weekly infusions of the combo, then another 9 months every 3 weeks of Herceptin.
I'm still trying to figure this whole thing out. I know that each person handles/reacts to them differently. I have had differing information about Taxol. My MO says that my hair will thin, but I won't lose it all, my ON says that I will lose it all. I'm preparing myself to lose it all, but I think my husband is keeping his hopes on the MO's side - which I don't understand, because he is bald!?!?! I'm going to get a short bob/pixie cut this coming weekend, so when I start losing it, it isn't so devastating - as I have thick, curly, past my shoulder hair now. I just don't think psychologically that I can handle the longer hair coming out.
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Hi Everyone-
Thank you for you posts!
Amelia, I so appreciate your comment about wanting to sleep to 9/18. I'm 8 days out from my first of six rounds of Taxotere, Carboplatin and Herceptin. The chemo was followed by 5 days of Neupogen shots. I finally have the bone and muscle pain from shots somewhat managed. I have been taking Claritin and Advil and it helps somewhat, at least during the day.
I'm dealing with a ton of gastro intestinal side effects.The worst is the nausea. I'm hardly eating and if I don't take Zofran I barf but the Zofran only helps to slightly dull the nausea. Then there's searing heartburn and constipation- delightful. I will never again take a normal poop for granted.
Waiting for the hair to go. My friend gave me a bottle of Latisse a week before I started. I've been using it everyday on my brows and lashes. My brows do seem nice and thick. Lashes are still puny. We'll see what happens after round 4.
I hope you all are well. So glad I found this site. Reading about everyone's experiences has helped me feel less alone.
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Good evening ladies,
Amelia, I was still having so much pain with expanders until I got them filled to 600cc. Seems to me it takes the pressure off my chest wall. Since I can’t have reconstruction now, I had to go back in for another fill as they deflated some. I was once again having pain....fill ‘um up and I ‘m good to go again! Hopefully I will have implants sometime in April or May at the latest.
LKinKC, I ate canned peaches, frozen peaches, lots of soup and crackers, scrambled eggs, a little cheese and baked sweet potatoes. This was when the nausea subsided for the most part. I stocked up on these very things today in preparation for round 2 on Tues. Oh, and peppermint tea is what I ha e been drinking a lot of.
Roxy13, guess I did get a bit of luck....no shaving for me anywhere!!! Lol Certain areas can stay gone....
Nite ya’ll
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Peachy - thanks for telling your story. Just aghast that they did an entire protocol to find out that there was another marker to consider. Maybe that is an argument for anyone to not do neoadjuvant therapy? Of course on the flip side, without doing neoadjuvant who knows if chemo is doing anything (in my case, for example). Is there a win win situation anywhere with this disease?! It seems not.
I am so sorry to read of so many adverse side effects that many of you are having but there seems to be a common denominator - many of you are taking all sorts of meds and more meds to combat effect of other meds that I wonder if the SE could be avoided or limited.
Aside from chemo EC (similar to AC), I take nothing but two days of anti-nausea (one day of infusion, and two pills on the following days) and find that the chemo side effects are those to be expected -- foggy, nausea, overall blah (and this time dizzy). Otherwise between infusions nothing but supplements and those high dose probiotics!
This is where I am thinking in Europe there is less of a focus on big pharma and as a result drugs are not overprescribed. There are no medical commercials on tv here (only for OTC meds). There is little to no advertising in papers or print that I can think of. My neuopgen shot showed a price of €100 per dose, but with our socialized medicine I got it for €1. I hear that in the US there are tv ads for it left and right, meaning high costs for publicity and needing high incoming returns from sales.
Goodjuju - you had 5 neupogen shots? I had two 50MU/ ,5 ml and my white counts went from 800wbc to 6,000 in two days. I did have a little hip ache, but to say it was caused by the neupogen is a stretch.
Having read of all the SEs of post chemo treatments (tamoxifen, ai inhibitors etc) I am seriously thinking that an elective hysterectomy is a better option - something I'll discuss next week when I get my third ovarian scan that the PET had signaled as an area to keep a watch on (belief was just a normal ovary working hard at a final chance before menopause - fingers tightly crossed that it is silenced now!).
Roxy - I think it is GREAT that you are out skiing! I wish I had the energy and desire to do something.
Becky - does your expander jut into your underarm area? I'm small framed and I think the massive structure is just too big for my body. I think my plastic surgeon is going for a full C cup on me! She is too excited to finish the job and match up the other side (now saggy baggy A+)
MHerzberg- unfortunately I believe taxol is a guaranteed hair loss
Princess- let us know how your follow up goes.
xx
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Hello Ameli01, it's good to know that there's someone from the third country with me here who understands the frustrations we experience here. I started my chemo on 13rd Jan and will be going in for the 2nd round on 3rd Feb. Have been working to keep my blood levels up. My 1st chemo wasn't that bad. I suppose to receive herceptin for her2+ BC but won't get that because it's out of my reach both financially and physically. Can you beat that? Will do chemo and go in for radiation and wait to see. It's all in God's hands. Wishing us all the best.
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Abby - sorry you have to join us but welcome to the club no one wants to be a member of.
It is heartbreaking to read that you can't get the medicine you need. I looked it up and it is only available in IV form. If they were pills it would be easier to obtain. There must be an underground network that helps people get lifesaving drugs. Ask around .... you might find a way.
sending love and strength to you!
xx
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Hello Ladies! Hope everyone had a good weekend and is feeling good. I'll be going in for my second round of chemo tomorrow. I'm glad I know what to expect this time around - the first time I think I wasted a lot of energy analyzing everything that I was feeling or doing since I didn't know what to expect. I don't look forward to it, but I know I can do it. Last Friday, day 11, my hair started to fall out. Every time I'd run my hand through my hair, I'd get at least 10 strands that would come out. By Saturday, it was a little worse, and by Saturday evening I was close to getting "clumps". I didn't want to see any big clumps coming out, so my kids played "hairdresser" Saturday night and had a blast cutting my hair, giving me layers, and giving me bangs (that were WAY too short and crooked!!!). There were lots of laughs and I'm not going to lie, some tears. But, I have to say, after it was all done and my husband buzzed it off, I felt so relieved. I actually felt stronger and - sounds a little corny - but I felt empowered. I actually like my buzz cut! Super light and easy and feels good. I think I have to get used to the gray more than the actual cut!!! I usually colored my hair, but the roots have grown out and now, I'm about 90% gray!!! I've been losing a few eyelashes here and there. Does anyone have any recommendations on where to get eyelashes/glue or any recommendations on makeup brands for eyebrows? I haven't started to lose my eyebrows yet, but I'd like to be prepared for when/if I do. Take Care everyone!
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Paisley - Your hair rocks! What a great look!
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Paisley, you look fantastic! The tears are real--I had them too--but they do pass. Everything does, thankfully. I had my second round Friday and agree it was much easier without all the analysis. I am sending calming vibes for round 2!
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paisley- you look great! Good for you tackle it and not let it tackle you! For eyebrows you could try using castor oil on them. Smells weird but promotes hair growth.
Okkate - wishing you positive vibes for tomorrow! Yes, number 2 has all the what-ifs taken away and it is easier to handle without the anticipation.
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paisley you are beautiful and you are strong
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