Starting Chemotherapy March 2018
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marlam-so glad you’re done. I agree that it’s easy to dwell to the point of overwhelmed. I am 8 days past round 3 and found this the easiest round so far.
BTW, I’m right on the border of OC and Long Beach. Doing all my stuff at Hoag.
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Congrats to all who are done! Its great to hear so many are moving on and helps me feel that this will all come to an end. I started my weekly taxols and have completed 3, so 9 to go! At least its single digits now! 16 chemotherapy treatments sounded nearly impossible and I'm still not sure I will be able to complete all 12 taxols. Had quite a reaction to the first two and was in terrible pain, basically all my muscles and joints, felt very incapacitated the entire week. MO thought it was abnormal and switched me to abraxane (albumin bound paclitaxol), first dose was today and I feel fine so far--no steroid or benadryl premeds given either. I know I can expect some muscle and joint pain for a couple of days but hopefully not nearly as bad and I will have some functional days each week. The only good day I had with the taxol was the first day when the steroid was working.
MarlaM, Rwns--I'm going to Newport beach for my treatments, but I live in north county of San Diego. My MO and BS are on Newport blvd, down the street from Hoag.
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mLghtn-I hope the switch makes it tolerable. And wow, you have quite the commute! But, Hoag might be worth the drive...seems very top notch!
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Hi everyone! Thought I'd check in since it's been awhile. I finished my last TC infusion on 5/31 so am finally feeling pretty much back to "normal" now. I did NOT get the Neulasta shot for this last round, and I felt so much better. Still tired and icky for a couple days, but not nearly as bad as the prior 3 rounds when I had Neulasta. (I swear the shot was worse than the chemo.) I had a strange reaction of face flushing, head rush/lightheadedness that started exactly 30 minutes after the shot went off, and with each round it got a little worse and lasted a little longer... so my doctor didn't want to take any chances. She said since it was my last round it would not be "as big" of a deal not to get it, but I still have to be extra careful with staying away from germs etc. I am a little worried about that so I'm trying to be extra diligent about washing my hands and avoiding germs. Thankfully I am now out of work for the summer so that should make it a little easier.
Next step for me is radiation, and my consult for that is this Monday. I am looking forward to finding out the plan and getting that show on the road. My next follow up with my MO is June 21, and we will be scheduling my port removal at that time as well. It seems like just yesterday I was getting it put in, so I guess the time did go by pretty fast even though I thought at the time it would seem like forever.
I had to shave my legs yesterday for the first time in almost 3 months so I guess that's a good sign my hair is growing back. My head looks like a fuzzy kiwi fruit.. lol. Still no sign of growth on my underarms or bikini area, but that's fine with me. Plan to forgo the wig most of the summer since the heat in South Florida is close to unbearable at times. Took my son to the pool yesterday and wore a bandanna and baseball cap which worked well for keeping the sun off and was comfy.
Glad to see so many of you are finished with, or finishing up, your treatments. I hope we all take the time to still come back and give updates/inspiration. I feel like I know many of you personally, and am grateful to have you all here! It definitely made things easier for me during these especially difficult past 3 months. While my friends and family are wonderful, sometimes nothing helps other than talking to those that are dealing with and going through the same things. The support on this board is amazing and I appreciate all of you! Hope everyone has a restful weekend. xo
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Hope everyone is doing well! I'm glad to be done with chemo, and Monday I meet my radiation doc.. So I'm guessing by the following Monday, I will start radiation.
I feel almost back to normal.. But I do get tired soooo much quicker after being active than ever before. I'm so used to having so much endurance. I can't wait to get back in shape... I've put on 13# total since starting chemo. I've eaten terrible everyday. Although my big Mac cravings are less and less... And I've been able to turn away MM's... I still crave unhealthy food.
Did everyone else gain weight, lose? Stay the same?
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Good morning to all! So nice to hear updates from everyone, and yes, would love to see everyone continue to update here as we finish up and enter the next phase of treatment - great suggestion Steph!
My hair at 5 weeks post is coming in sooooo slowly, with long white whispy hair almost everywhere and then my defiant darker hairs making slower progress, kind of making my head look dirty. Not sure why the growth rate is so different for the white versus the dark. I have been wearing my really cheap wigs (<$20) that I picked up at a local costume store - they're super light and although I'd hate to get too close to an open flame
they are great under hats and caps. I lost about 3 pounds during the chemo process, but I have to attribute that to stopping and now seriously cutting back on wine - LOL! I am also trying very hard to eat healthier - there are some threads on here where folks have made radical diet changes, but I am more of a moderation person so I am trying to have more fruits and veggies, stick with very lean meats, and cut out as much processed food as possible (says the woman who went out to dinner last with the family and had apps of fried zucchini sticks and something they call "potachoes," imagine that nachos and potato skins had a baby....OK, moderation is not perfect....
My radiation mapping (part 2) is Tuesday and dry run is Friday - start date is the 18th. Got my path report and rads "OK" back from my surgeon end of the week - there was very little cancer found in the node they removed - far less than the imaging and biopsy suggested, and I was so relieved. I have been researching how to lessen the effects of radiation burns, and it seems that Europe and Canada are ahead of the US in pre-treatment/during treatment protocols. A take-away is over-moisturize, several times a day. In the studies what they called "over users" all had later burn reactions, and less severe ones, than the folks who didn't treat much. And they recommend starting about a week prior, to make sure the area is well-hydrated to begin with. Here's a link to a 4 step process I'm going to try:
https://thetruthaboutcancer.com/prevent-radiation-burn/
I may have double-posted the first two paragraphs. If so - sorry! We have three cats and one of them walked across the keyboard while I was typing!
Happy Sunday to all and wishing everyone a great week.0 -
hi Wildcolonialgirl ,
I think a lot of the burns from rads depends on your skin type, however, I think there are ways to mitigate the side effects. When I did rads 3 years ago...I had burns later in the process that actually got worse 2-3 weeks after I was done. And I was told that was what was to be expected. I had no skin breakdown. I just hsd red skin rhat then turned dark and faded with time. I bought a couple of soft no underwire bras that I wore through the process. I had rads in the mornings (you can't wear cream or deoderant) and I took aquaphor with me and slathered it on right after rads in the changing room. I would then put more on once during the day and before bed and shower in the morning before rads. I continued to moisturize religiously for about a year after rads but with a less greasy moisturizer, just skin lotion, they say the skin on the rads side wil always be little drier but i never noticed a difference
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Great to see updates from everyone. Hope everyone has a good week.
Bec-Ky - I actually lost a bit of weight on chemo, mostly due to inability to taste food and then, stress. The tip of my tongue was a bit numb. MO told me I had neuropathy in atypical areas - tongue and top of my hand. I did work out during chemo, some days it was a slog at the gym but felt better afterwards. My energy was less but I pushed. Best of luck with radiation.
Steph74 - Congrats on your last TC!! It is odd about the hair growth. I never lost my underarm growth, eyebrows or eyelashes, but from the waist down nothing. Strangely the bikini area seems to be growing back the fastest - just in time for summer. Yuck! My legs are still hairless.
Wildcolonialgirl - Great news on the lymph node. I am wondering about the difference in hair growth. Interesting. Good luck with the radiation.
I started Tamoxifen. MO said take it every day either with food or without, about 20% of women have side effects, and then went over them, etc. Oddly, pharmacist told me take it at the same time every day after a big meal. I wonder what everyone else was instructed by their MO? Overall, this anxiety is going to get the best of me.
Energy levels are back to normal, taste buds are not, neuropathy is less prevalent. Tomorrow is my first Herceptin only infusion. Heard that in Europe they have shots you can actually give yourself that are supposedly more effective. That would be fantastic if we ever get there, no ports once chemo is finished!
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May07 thanks for the rads tips! I really appreciate it - definitely planning to bring cream and put it on right after the treatments.
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hi Wildcolonialgirl,
How are you doing? I learned today that something was seen on my planning CT for radiation as well. I was in a bit of shock and didn’t say much, so don’t have any details “except saw something small thing”. Hope it all went well for you
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Wildcolonialgirl-saw you've had a similar experience as me. How long did you wait after the lymph node was removed to do your radiation? I don't have ultrasound results yet but looks like I might be heading down that path. I don’t quite understand why this would not have been picked up during imagining done about 3 months ago. Also I had a SNB with 0/7 nodes positive, not even a trace amount. Did your doctors explain why iyours wasn’t found by earlier imaging or during SNB
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May, great information for lotions. did you use the same one throughout the radiation or several different types depending on ho you're skin was reacting to the treatments?
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I was on the boards and there were a lot of different recommendations from emu oil to coconut oil. But the radiation oncologist recommended aquaphor and honestly it's so greasy and so hydrating it's the best thing to use during rads. And I was scared to use an oil and have worse burn if there was any reminents of it on my skin. I just got the big vat of aquaphor and used it a few times a dayit did the job. About a month after rads I switched to concount oil at night before bed which is excellent for the skin in general but less messy than aquaphor. Definitely invest in comfy no underwire bras..u don’t want to irritate the skin...target has good cheap ones...I threw them out once I was done with the aquaphor.
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I kept several kinds of heavy duty moisturizers (Aquaphor, Eucerin, Desitin, . . .) around and slathered on whatever was closest several times a day. I’m not sure it’s worth getting anything special.
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Walden1, sorry to hear you're having the same "interruption," it is frustrating!
My SNL biopsy during mastectomy in January was positive, but they didn't remove any others at that time and the dye trail didn't show more than one SNL. I understand that given the positive SNL they anticipated there could be impacted axillary nodes; they follow a less invasive protocol based on treatment wtih chemo/rads and focus on minimizing on axillary dissection to help reduce risk of lymphedema. Given the location of the node, post-surgery swelling likely hid it for quite a while, and then I had no more imaging until the first mapping session. My surgeon said that once it showed up on the CT, it was easy to pinpoint - knew just where to feel. She said it likely responded to the chemo. When they did the removal last Monday the adjacent nodes appeared normal as they had on the CT and US and so they only removed that one. And then the path report was better than the biopsy suggested with only trace deposits, and no sign of it extending beyond that node.
Due to start radiation Monday the 18th, exactly 2 weeks after the removal. Of course, I have round 2 of mapping today and dry run Friday - so I am hopeful but waiting to get "the word" after they finish up this week. The delay now would be based on healing. Hoping that you get a good path report and don't have to do this route, but if you do it's not too much of a delay!
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May, and Ingerp thanks for the information. I will be shopping online to stock up on lotions..
Bec-key and Steph , thinking about u as u go into the next step of treatment rad..
Btw Steph, those will always be good days in my book, when i can shave again..
Question as children we go theu a series of shots for immunization to attend school and prevent mumps, measles ect.. Do we have to go thru Reimmunization after Chemotherapy,Since our chemotherapy is wiping out our immunity? I attempted search for details but didnt see anything regarding the potential of needing reimmunization after we chemo.
Good vibes for everyone!
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Chemo wipes out our immunity for all the shots we had?
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Happy Sunday! Bec-ky and udrago, in all the research I'd done, I didn't see anything about the need to re-immunize.
All clear last week in the rads mapping and dry run - starting up tomorrow. The rads tech team had the same message you've been sharing here - "you cannot moisturize too much."
Interesting post-chemo result, a good deal of my eyebrows have fallen out recently. I'd read this can happen weeks after, and it did.
Hair continues to creep back - and the non-gray strands are now competing a bit with the white and gray - so my head looks dirty. Tip - the stylist who helped me with my wigs said that a lot of her clients, when the hair starts to fill in, use root cover with a brush to color the strands and fill in, to be able to go wigless when you still might not feel you have enough growth.
It's Father's Day - my husband's been out of town on business and flying back this evening so I guess I need to go out and get something on the way to the airport!
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Chemo can affect memory cells . https://blogs.biomedcentral.com/on-medicine/2016/0...
"Titres of anti-pneumococcal and anti-tetanus antibodies were both significantly reduced post-chemotherapy and did not recover during the study."
I will be having titres done after I finish & re-immunizing if necessary.
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Good Morning Ladies, how is everyone doing this week? Good luck to those starting rads this week and everyone pushing through the last few weeks of chemo.
I made it through both of my girls' dance recitals this past weekend and only slightly neglected my husband on Father's Day. Both girls had a couple days each of stomach flu this past week so I'm holding my breath and praying that I don't get sick. My 6th and final round(!) of chemo is next Thursday 6/28 and I'm so glad, but still dreading it. Work has been very busy and we have a huge show coming up on 7/10--the pressure to meet deadlines and expectations while fighting through the SE's is pretty overwhelming right now.
My onco did another physical measurement of my tumor before round 5 and he said it had shrunk again to about 1cm. It feels even smaller now so that is very encouraging. When I told him I still thought I wanted a bilateral mastectomy even if the tumor shrunk completely away, he surprised me and said he didn't see a reason to recommend that for me. He said reconstruction wouldn't look very natural when it is just skin over an implant and that I didn't have that high of a risk because I don't have BRCA. I started to doubt myself a little after that, but I did some more research and looked at my scans/reports again and I still think the bilateral is what I want. We don't know why I got an aggressive, fast-growing cancer at 40 and there is just not enough research on these occurrences in younger women to make me feel like my risk isn't high. I know this is a very personal decision, but for me I think the fear and worry would be greatly reduced by removing my breasts. I am sure the surgeon's opinion will be different from the oncologist's anyway. I will see her again on 7/9.
I asked my onco about the intimacy issues and he recommended a new moisturizer/lubricant called Hyalo Gyn. You can only buy it on their website and it costs $25 for a 30-day supply. I ordered some, will let you know how it goes.
I've been losing a lot of hair again this week, but still seem to have enough to fake a full head of hair with my carefully placed ponytail. I have approximately 14 eyebrow hairs left and a whole herd of little baby eyebrows trying to come in. I hope they live.
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TCHP #5 of 6 is tomorrow. I had my echocardiogram today to check for signs of heart failure, which is a possible side effect of the herceptin, and all was good. So relieved by that, if my echo was bad they would have probably stopped chemo. Also got surgery scheduled--for the same day as my husband's birthday. Sorry hon! I've had lots of swelling lately, been sleeping with my feet on pillows to get rid of it. I also decided to fast this round. I think I've gained about 3 pounds with the lousy diet and had already planned to skip a few meals because I was all bloated from the swelling, and I'd heard of the fasting experiments going on and thought at minimum it would help me drop the extra pounds, and maybe it will also help with chemo SEs. We shall see. I ate my last meal last night at dinner and I'll eat again on Thursday mid-morning.
Sid - hope you're feeling ok and avoided catching whatever your kids had. It's odd that your MO doesn't think BMX is necessary. Mine didn't comment either way on surgery but I consulted with two different surgeons at Mayo in Phoenix and both thought BMX was the way to go due to my age (41). I'm jealous that you still have hair. I still have eyebrows, but they've thinned significantly. And I have male pattern baldness on my head despite cold capping, which I'm still doing.
moth - interesting link. Thanks for posting that!
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Hi ladies!
Tomorrow I start radiation.... And I'm looking forward to getting that started and over with.
I don't think I have much SE's left from chemo besides whenever I do any physical activity the numbness in a couple of my toes on my right foot comes back.
Other than that... I do feel like I'm still retaining some water weight. And lots of fat. 😂
I just snapped a pic of my hair and will continue to take a pic every week to document the hair growth. (starting at almost 3 weeks post last chemo)
Most my eyebrows are gone or significantly thinned out.. I need to fill them in to make them look normal (when I care)
And my eyelashes are thinned out and gaps in places but not really noticeable to anyone but me.
I'm no longer craving Big Mac's... thank God... but I'm still not craving salads like I used to! I used to eat rather healthy! I feel like I crave carbs SO much... And I'm trying not to eat them! And by carbs I mean like breads, pasta, chips, cereal... Etc. Unhealthy junk!
Hope all you ladies are doing well!! ❤️
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Bec-Ky—I’d say treat yourself to some junk for as long as you want. I bet you’ll get back to normal (or closer anyway) as your life does. And congrats on the rads. I keep forgetting I have that little treat to look forward but it is going to be <relatively> no big deal for you. You have got this!!
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hapa--thanks, so far I am still feeling okay, if I don't get sick by the weekend I guess I can consider myself safe from the dreaded tummy bug the kids had. It's good that you're still cold-capping, my NP keeps telling me it helps the hair come back faster. I hope your tx went well today and you have minimal SE's this round. We're getting there. I have my repeat Echo next month.
bec-ky--I have lost weight overall and really struggled with my appetite and SE's last round, but I am making up for it this week. Yesterday I went through the drive-thru at Taco Bell and then ate in the parking lot so no one would see me lol. Today I had chicken fajitas that I slathered in queso and a whole bunch of chips. My appetite is back and I want everything! I hope rads goes well for you and it's over before you know it.
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Just a quick check in with everyone. Two weeks into Tamoxifen, and it is kicking my butt more than Taxol. Hot flashes and fatigue, fatigue and hot flashes, etc. Apparently, my body was rolling in estrogen, because this is brutal. Anyone else with Tamoxifen SEs? MO told me 80% of women do just fine on it. I am not that 80. They offered me meds to counteract it. Meds for the meds. It is like a hamster wheel. Really, I should not complain, but I hope they have something better soon. Read about a gel form that is supposed to be worlds better but is not yet available in US.
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Becca-I'm so super scared of tamoxifen.
FYI don't look at the tamoxifen support group on fb because it's full of people with side effects who are miserable. It scares me so much....!!
I forgot to mention... I got my period back on day 20 of my last chemo. So basically 3 weeks after being done I got my period! Super light at first.. but slowly getting heavier and I'm. Sick of panty liners.... since it was so light, but today it's enough to warrant a tampon so that's better.
In a nutshell basically skipped 2 periods that's all. I was hoping for more. Darn!
First radiation was a breeze.... 21 more to go.
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Bec-Ky,
Yikes. Thanks for the warning. I will avoid it! No use adding more to the ones I already know I have.
I actually think the Tamoxifen prevented my period from returning. Apparently, that is one of the positive side effects. Since it actually can cause thickening of the uterine lining it makes sense that it would build up, so maybe not a positive SE. Sigh. It is either one thing or another.
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Hi ladies. I had my 1 round of tchp. I started my period;( maybe it stop after next infusion or do some people still have it during chemo?0
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Hi all! I’m 3 weeks PFC today and still no sign of my period. Haven’t had one since April 10. (I got one period after my first TC cycle and no more since.)
I feel great and my appetite is ravenous. Started increasing my exercise routine this week. I’m out of work for the summer so the hard part will be maintaining it when I return to work My head hair is coming in (sadly the grey hairs are in the lead) but it’s like watching water boil. I need to stop obsessing about it!
I start my first of 16 radiation treatments this Monday and then have a follow up with my MO at the beginning of August to discuss Tamoxifen. If it makes anyone feel better I personally know 3 people that take Tamoxifen with no issues. I’m trying to stay positive about that! 😬 My port is coming out either next week or the week after.
Glad to see so many are finished/finishing up. Becky glad the first rads tx was uneventful. Hoping mine is as well! Have a great weekend everyone!
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Steph - that's so awesome your hair is already growing in! I had another possible "21 day shed" yesterday.. of a few more gray hairs that had been hanging on fell off my poor head ... So I'm Hoping soon it will actually start growing all of the hair!
Yep... It's like Watching Paint drying too.
You're at exactly 21 days today I think... So cross your fingers you don't lose what you have!
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