Starting chemo January 2018
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hello my chemo friends.
I’ve got 2 more taxols to go.
I thought I’d share what is helping me lately.
It is essential oils from YL. I was never a believer to such “sorcery” but boy, they do help me!
They improve my mood -I smell them and put a little bit on top of my head or neck.
But my biggest thing is a handmade serum I got from the lady that is a YL rep.
Before my skin was super dry and I didnt even know what to do with it-I have always had oily skin and had breakouts but not so much wrinkles (yet)
And with chemo it was like I aged 10years overnight.
Well-I’ll tell you this- I actually got compliments on how pretty my skin is! Even my MO said that I am doing something very right!
I know it may be a small detail to many but it greatly improves my mood and makes me feel...prettish? And I’ll take it on any day.
I am happy to share the recipe for the serum-that is if anyone is interested.
Have a great days ladies
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and about gfear of reccurance. I was scared to the point of having a panic attack every hour but my very wise BS told me- whatever happens in the future, will have happen. But its better to live your life for however long you will have than live it in constant fear and then regret that inead of living your life you just worry all the time. Cliche, I know, but true.
I am planning on doing everything I am supposed to-finish my chemo, do the rads, the hormons (7-10yrs for me as I am high risk of rec.)
I want to get to healthier weight and excercice, eat right and all that.
If I still get reccurence, then at least I can look myself in the mirror and say, I did everything I could, my concious is clear...
Of course it doesn’t mean I am not afraid, esp at night when i cant sleep and the darkest thoughts are coming in. Or when I look at my 2 year old and think if I’ll get to see him grow up. But, I keep it at bay by thinking I am in control, by doing anything I can to be as healthy as possible
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Thanks DxAt37. There are lot of things that one can fear in today's world, for sure. Someone just reminded me of this amazing poem by Wendell Berry that helps me late at night (along with the Ativan, haha)
The Peace of Wild Things
by Wendell Berry, When despair for the world grows in me and I wake in the night at the least sound
in fear of what my life and my children's lives may be,
I go and lie down where the wood drake
rests in his beauty on the water, and the great heron feeds.
I come into the peace of wild things
who do not tax their lives with forethought
of grief. I come into the presence of still water.
And I feel above me the day-blind stars waiting with their light.
For a time I rest in the grace of the world, and am free.0 -
EDITED to correct drug name from Zoleta to Zometa, and to clarify what it is used for.
Hello, ladies!
Haven't been here for a while.....my daughter was sick almost all week and i had to keep her from day care, so we were busy.
On Apr. 4 I saw my oncologist(a week post chemo). I had my blood drawn for genetic testing. I was referred due to a young age(34). It takes very long time to get the results done(3 months), and apparently waiting list is 10 months long...
Since I finished my chemo, the next steps for me are:
- appointment for radiation for mapping on Apr.20, following by 20 rounds of rads.
- to continue with Herceptin every 3 weeks. According to ECHO cardiogram, my heart output went a bit down: from 66% to 63%, so to continue with Hercepin is acceptable( the medication does a damage to a heart muscle).
- to continue with monthly Lupron injection in addition of Tamoxifen which will be started in a couple of weeks. Apparently it reduces recurrence by 50%(Yay for even more hot flashes! I already get them every 2 hours:)
- Another drug was recommended - Zometa(zoledronic acid) - to prevent bone loss/thinning that can be a result of endocrine therapy.. However if there is any hidden infection in the teeth/jaw, may cause jaw necrosis.
Went to dentist on Friday, and now i am facing one tooth extraction. I have a dormant process going on there for 13 years and if it wasn't for this medication i wouldn't bother with this tooth,as it doesn't have nerves. Since the medication might trigger a spike in infection, I won't be taking any chances. Feel very sad about it, as I still have all my 32 teeth. On the way home I even cried a bit in grieve for this tooth . Just kept thinking: my poor body has to take so much beating in order to get better......
Sleeping has been avoiding me lately: go to bed late, no naps, one cup of coffee a day, multiple awakenings during the night..... Maybe i need to exert myself more....Motivation, where are you?
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Oh, with all the sharing/complaining/whining I forgot to share my most wonderful news:
this Friday, on April 13th, my mommy is coming to Canada from Ukraine for the very first time!!!
Can't wait!
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Hi, everyone! I haven't been here in a bit since I finished chemo about a month ago. I start radiation at the end of this week. Recovery has been going surprisingly well, and I can feel my energy returning, though my tendency to overdo it leaves me tired sometimes. I'm anxious to get the next treatment cycle started, but I've been enjoying this break. @Roxy--I hear you on the general blahs post-treatment. I have days like that, and some days when I'm just wired with anxiety about recurrence chances. And then I also have good days. I'm hoping for more of the latter.
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Homemadesalsa - thank you for a beautiful poem!
DxAt37 - to worry not even about my self, by my 2 y.o. future and my presence there, that' s what i do a lot:)) I also live by the philosophy, that whatever happens - happens for a reason,and whatever has to happen - will happen not matter what
I agree with you, we need to make quality of our life the best we can, to ensure that our bodies and minds and spirit work in unison.
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Beautified by my 2 y.o.;)
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Oleysa, these are some serious earrings your 2 yo made! So creative! I've got a boy and every day we have to go over all my scars and bruises. He needs to check every single one of them, making a sad face and “pitying" me. So sweet 🤩
My 12 yo girl though has harder time with me going thru chemo, losing my hair and all that. It is a difficult age..
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i have a question- I know some of you went thru a cold or flu during chemo. Any tips on how to handle it?
I was told by my nurse I will have to get a chest xray if I won’t get better by like tmrw, to excude pneumonia... seems like things can get really serious really fast while on chemo
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Hi DxA137, I got the flu 5 days after my 2nd chemo. I had cough, felt achy ect. My husband suggested I take my temp. I didn’t fell like I had an increased temp at all. It was 101. Instructed to go to ER. I was diagnosed with Influenza A and put on antibiotics, Tamaflu. They kept me 2 nights. I had chest X-ray in hospital and they thought I could possibly have the beginnning of pneumonia but probably not. They did antibiotics anyway. I hope everything turns out to be fine.
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Hey January ladies-
I've been doing really well up until the first taxol/ perjeta/ herceptin dose almost 2 weeks ago, when a host of side effects kicked in. Maybe it was just the loading dose, or that it's the 3-week interval, not the weekly (MO said it would be too confusing to have herceptin/ perjeta on 3-week and taxol on weekly), but boy have i been slammed. Diarrhea and bone aches, ugh. I can usually get by on half an imodium, but not now. Exercise has helped a lot with the bone and joint aches a few days post-infusion, and twinges of neuropathy early seem to have been avoided by taking L-glutamine, L-carnitine, and methyl carbolomin (a form of B12), but oh the diarrhea. Maybe the second dose (next week) won't be so impactful?
Anyone else feeling anything similar? I've gone back to taking one Ativan a night just to get some sleep.
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Hello all!
Homemadesalsa --- I've done three weekly Taxol (3rd one yesterday) and knock on wood, I am not having any SEs other than a little bit of bone pain - but nothing requiring any meds. My tongue is a bit raw in some places but who's to say that it isn't due to bad diet. I am doing the 3g of fish oil a day to stave off neuropathy because I am refusing to ice my hands and feet (doing my head is enough torture). I also take L-carnitine. I don't sleep well at night but that has been going on for a few weeks. I might hit the Ambien I can't have yet another sleep deprived night. It makes my days too fuzzy.
DXat37 - I had the flu and was put on two different antibiotics and did a chest X-ray. I am still struggling with a weird residual cough which I'm convinced is damage from chemo of the mucous membranes or just needing that much more time to clear out my system. Out of curiosity, where in Chicago are you doing treatment? I'm looking to do Tomotherapy radiation in Chicago and am hospital shopping. On the essential oil topic, a YL rep suggested to use frankincense as it kills weird unfriendly cells (externally). I think studies have proven this to be true.
Olesya - I'm so happy for you that your mom is coming for a visti! That will be the best medicine ever! The earring are great! They bring out the sparkle in your eyes
My skin has flaked off (and continues to flake off) and underneath I am having baby soft new skin - it looks great! Too bad the emaciated look that I have doesn't bode well for the wrinkles. I need to pack on some weight and am doing weight training but hard to find the momentum to get on my treadmill....
Roxy - I'm guessing it is normal to now find yourself in a limbo of a sorts. But forge onwards and push all this treatment in the past. It is done, over with and your new self has emerged. Certainly don't beat yourself up about a sandwich or a glass or two of wine. We always need to focus on quality of life.
Just when I couldn't think of cold capping yet another time, it turns out that yesterday the machine wasn't getting to temperature and I had to have that frozen helmet on my head for 4 hours instead of 2! I was ready to jump out of my skin but I have to remember that every time I look in the mirror and still see some dangling clumps here and there that it is worth it. I choose not to go out in pubic without a head covering of some sort (wig plus hat seems to be a favorite look), but please please please forces above, please let some fuzz grow back on that huge bald spot on the top! I'm starting to rival my husband with the shine!
I can't believe that I'm still going to be doing chemo until June
I'm not even half way there with the treatments. That makes me sad.... xx to all
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Amelia et al, you ladies still rocking chemo that started in January are my heroes!! The end of chemo will be here before you know it and then let the healing begin! We're here for you through thick and thin.
It is hot in S TX and I can't stand wearing anything on my itchy head. I have fuzz and bristles and it will be interesting to see what dominates. In this pic I have painted on eyebrows for the first time. The second pic is my dream haircut...one of these days!
Laura
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I was going through the pictures on my phone , and found this one. My daughter was in a phase of face/body painting, and I was the canvas:))
This picture is 2 months old.I love it because of
it's symbolic representation of scars and bruises, and veins that have "healing potion " in them.
Just looking at this picture empowers me, makes me feel stronger, and ready to fight.
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hi All,
Last week I had dosetaxol with a neulesta shot. The SE have hit fairly hard as I have a very bad skin rash - my hands look like I have been in a prize fight. My mouth is sore and I have lost all my taste buds. I am happy that the bone pain is starting to subside.
Just not the best week. Still have two more of these shots left - yuck.
Anyway stay strong.
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Olesya - LOVE the picture with the paint!!!! You look fierce!
lmurphy - your eyebrows look great! I didn't realize they were makeup until I read your post - they look real!
Coach - did you try Claritin for the neulasta shot? I took a claritin the day before, the day of, and the day after and had almost no pain from the shot - until the last one and then just a little achy. I've actually been taking claritin every day for Taxol pain and I think it's helping with that as well.
Amelia - we are on the same chemo schedule! I won't be done until June too! Did you do surgery yet? I'll be having a double mastectomy 3 weeks after I finish chemo.
I'm getting ready to go in for my 4th taxol today. Not looking forward to it. I see the doctor today for the first time in 3 weeks. I'm curious to see what he has to say. I plan on asking him if I can use Deep Woods Off on my skin now that the weather is going to start getting nice. My husband just pulled a huge tick off of my dog yesterday. I'm also curious about gardening - I've heard that you have to watch tetanus which can be in the soil. I plan on asking about this today since I would love to put in a vegetable garden this spring. I'm a little bummed at how tired I've been already after only 3 taxol treatments. I expected to feel like this halfway through - not this early. I'm a little worried about how I'm going to be feeling at the end of this! I won't finish until the beginning of June!
This is a really dumb question, but is it ok to use anti-wrinkle cream while on chemo? I usually use No. 7 brand and miss it. I haven't used anything except moisturizer since I started, but would like to start using the anti-wrinkle cream again.
Tomorrow, I have a 2 hour appointment with a radiation oncologist to find out if I'll need radiation after surgery this summer. I'm not sure how I feel about it. If I get it, I worry about delayed reconstruction, lymphedema, etc. and if I don't get it, I worry that I won't be doing enough to prevent a recurrence.... Are you ladies doing radiation? Have you had your surgery yet? How does the radiation impact your reconstruction?
Have a great day everyone!
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Paisley - I did a mastectomy prior to chemo and will probably opt to do the other side when I have my exchange surgery this fall. You are probably a candidate for radiation
I start mine 20 days after last Taxol and won't have any surgery until three months afterwards (getting my ovaries out too). Radiation can change the skin and surgery is usually on hold until the skin totally heals.I've been using ant-wrinkle cream on my face --- not like it is doing anything noteworthy
I wouldn't worry about it --- you might want to think about the OFF just because it is such a noxious chemical spray. There must be something holistic you could sub it out with? I know they never work the same. With gardening, you need to be extra careful about cuts and scratches if you've had your nodes out. Wear gloves at all times! Have you been tested for exposure to toxoplasmosis? It can be picked up from gardening and you sure don't need any illness while on Taxol. I got it sometime after my pregnancy and never even noticed, but with a compromised immune system we are more susceptible to anything.
If the radiologist thinks you should be zapped a bit -- I was proposed the Tomotherapy (I'm assuming it is a brand name of a type of hypo fractionated machine). It is a three week program instead of the usual 5 (then again doses are higher each visit). The machine is also very protective of the heart, lungs and healthy tissue.
I'm not sleeping well and maybe for this I am always tired in the afternoons. I wish I could get one full nights rest.... that would help.
Olesya - LOOKING GREAT!!!! Thanks for posting your uplifting photos!
Lmurphy - I love that hair cut! You'll be there soon!
Is anyone else miffed about the posts being accessible to the general public (i.e. Google search) without being a member? I would post some photos but am creeped out about anyone stumbling upon them.
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I was also wondering about the public settings. That’s why I don’t use my name.... Although I did google myself the other day (yes, I’m that bored) and nothing on this forum popped up.
I think there may be a way to send messages to a group if we add one another as “friends” in here. I’m not quite sure. I just had a quick look but don’t know how it works. I would definitely be interested. I know I think twice before posting something personal or pictures. I don’t know who’s lurking here...
I hope everyone is doing well.
XO
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Hi Ladies! I just had my final Taxol/Herceptin infusion. I can't tell you how happy I am to be moving on to just Herceptin for the next year. Of course, rads is on the horizon but I'm taking it one hurdle at a time.
I made it through chemo and so will the rest of you still in engaged in the struggle. Stay strong, my sisters!
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Congratulations Gigi. Huge sigh of relief. 3 more dose dense taxol-perjeta-herceptin for me- end of May.
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You can do it Homemadesalsa! You are so close to the finish line! Keep us posted on your progress.
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Yay Gigi! You did it! Congrats on jumping this huge hurdle!
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love to hear people completing chemo! You go girl!
I have developed a large rash on my hands, legs and neck. I have taken Benedryl and cream but it doesn’t seem to help. Has anyone else developed a rash from docetaxil?
Stay str
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Coach, I've developed a rash on my hands and feet to a point where it was all bloody (because I was scratching it in my sleep).
I was prescribed a cream Triamcinolone Acetonide 0.1% and steroid tablets for 6 days - I cant tell you the name as I discarded it already. It's a lower dosage than we get on or before our chemo days and unfortunately some of it you take at bedtime. Ativan helped me.
My advise would be not to wait till it gets really bad. I still have little scars from little blisters on my feet and it is not a hot look.
I hope yours will go away quick!
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Gigi, just saw your post - Congrats girl! So happy for you!
I've got 2 more to go, my last day being May 2nd...
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Gigicommon-Congrats.
Okkate75- It was good to get an update on you.
This journey is crazy. I am a week post chemo. Day 1-3 post treatment were hard. 4-5 were good. Day 6-7 I feel wiped out between hot flashes and fatigue. Mornings are good though.
I completed a PET on day 4 post chemo to see how I am responding to treatment. Based on the results I can move to surgery as long as it's scheduled around the time I would start round 5. So in two weeks I will either have surgery or chemo at a reduced dosage. The plan for radiation will be finalized after surgery is done.
Looking forward to tomorrow.
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I have good news to share! I made it all the way through my Taxol treatment today with NO ALLERGIC REACTIONS. The down side is that they have to give me the Taxol very slowly (50ml/hr), so it takes about 5 hours to get the full dose, but at least I got it! It looks like I will be able to get the treatment moving forward.
I'm three treatments in, nine Taxol and three Carboplatin left to go. Best of luck to all of you still in treatment, and congratulations to those of you who have finished. It's a big accomplishment!
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Thanks for all the support! You guys have been an invaluable source of support and inspiration for me throughout this chemo journey. On days when I could barely function I drew strength reading about what was going on with you. It wasn't easy but because of all of you, I never felt alone.
Eschindler - Getting through it is the goal and you are on your way. Congrats!!!
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Eschindler- Glad to know it has been going well. Hang in there.
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