Starting Chemo in September 2017
Comments
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Meg101- Thanks for the encouragement.
HopebringsC - you rock in that hat. do I detect eyebrows?
I will see my RO one last time Monday and then its all on me to make an informed decision. Sometimes I wish one of my Doctors would be blunt and say "this is what needs to be done. Period."
Did anyone else agonize about which treatment course to take? Time is running out and I've got to make a Decision. This is what happends when one lives alone and doesn't have anyone to talk to - But All of you have given me some good ideas and have been so helpful. Thank you! "heres to minimal SE's - Clink"
Oh! one more thing. In the hand out from class it said 'alcohol keep to minimum' Yeah! I couldn't drink before so this means I can drink now!
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rljessu - I'm telling you, the deciding was soooo hard!! And I have the support I need, but it still was agonizing. Are there any church groups you can maybe reach out to that may be able to organize rides and meals for you? I'm not affiliated with any where I live, but a woman I know said her church organizes meal trains and you don't have to be part of the church. Perhaps where you live there may be also. I agree with Meg, tell your Oncology office and they should be able to help in some way - hopefully! If I lived near you (I'm on the central coast of California), I would get you set up! Hugs!! One last question: have you gotten any second (or third) opinions? Some MO's will refer you to someone, even if it is over the phone, and you can maybe feel better about the treatment plan.
FarAway - thank you for all that info regarding the ice. The why's stick in my head better when I'm trying to get all the how-to's down, if that makes sense. I will start the ice suck as soon as I get to treatment and go a little after my infusion. It's funny - I have a friend coming to keep me company, but I won't really be able to talk to her with all that ice in my mouth!
Amy - Yay! #3 down and no Neulasta!
Meg - That's so cute about your dogs. I have two parakeets and they don't know what to make of me now. In the past they have never liked to be around me when I have a hat on. Usually are shoulder and head sitters, but are not liking all the new headwear I've been sporting lately.
mkn - If your MO isn't worried, then you shouldn't worry. My skin is more reactive to the treatments than my gut is for some reason. My pit zits have calmed down, but I still got a couple. And there are a few new small red "spots" that have cropped up on my skin. I did make an appointment with my derm though for after chemo is done, to check on things. I feel better just having that on the books.
hopebrings - love the pic - made me smile!
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rljessu, it was one of the hardest decisions I've ever had to make. I still hate that they're pushing poison onto my body every 3 weeks, but once the decision was made and I actually got in the chair and experienced it for the first time, I feel better about my decision. I feel like the chemo is cleaning up whatever cells might be lurking in my body. Your comment about alcohol made me laugh. We went out to dinner last night to celebrate my parents anniversary and I tried to have a glass of wine. It tasted like turpentine. It was gross and I usually love wine.
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rljessu-thank you!, and yes I still have eyebrows and lashes.
I was thankful my MO told me the game plan I don't habe to make a decisions - she's a straight shooter and I love it.
Good luck! Making your decision
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Rlj -- I do not think it is because you live alone, I think they are hard individual choices that everyone has to make. Each person has to weight the risk of the treatment and decide what they can live with - I don't think think it matters if you live alone or not - difficult either way.
This time, I didn't have a choice, there was only one path for the dx i rec'd --my first time, I did spend a long time deciding - I don't regret it, it was just a very difficult choice. The only advice I can give is -- when you decide -- don't second guess yourself - make the decision and go forward either way.
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Rlj, I think living alone does make making a decision harder because you have no one to bounce thoughts off as they occur. I live alone and have never felt as isolated as I have the past few weeks. Yes, I have friends and family who are supportive, but if you compare living alone to living with a spouse or other family member, how many times in a day do you normally speak out loud and receive an answer that might stimulate further thought. Then again, I'm really struggling with what I think may be depression because of my treatment, so I'm probably biased.
I feel foggy headed a lot lately and I don't have my normal energy. I feel like the world and everyone in it is moving forward as if I've just been forgotten. It's very sad and hard to be positive.
I had to choose between chemo or no chemo because I was right at the cut off point (5mm). I chose to get chemo and herceptin because I didn't think I could handle the what ifs that would happen if I later found out it had spread. Now I wonder if I'm killing off the good parts of my body. I will feel better once chemo ends, right? I just feel crummy. I push myself to get out and socialize a bit,but really just want to give up. This is not my normal personality so it's very scary.
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thank you milkweed. i will try to keep my chin up with the whole process. i think the only difficulty is since i'm doing chemo first, can still see and feel the tumor in my chest. and that's the hardest part that screws me up mentally sometimes. you are right: if my MO is not worried i should not worry.
RLj, any decision when it comes to the situation is not easy. i was in another country when i was diagnosed and it did help to have a friend to help me focus and say "decide where you want to get treatment, the rest will follow" and also "whatever you choose, it will be right for you". but that made me realize that no matter what people around me say, it's my body and my mind that willl fight throughout this. and there are some decisions where you really need to be clear with what you want. For yourself. Not what the statistics say or what anyone else says but (and i agree with travel_girl on this) it has to be a decision that you can live with. that your body and mind are at peace with. it will not be easy and maybe a pro con list will help or maybe just writing it down on paper will help. i wish you strength and clarity in making this decision. And as my friend told me: whatever you decide, it will be the right decision for you.
*hug* -
Brightness, I'm so sorry you're having such a hard time. I encourage you to talk to your medical team and let them know how you're feeling. Hopelessness, loneliness, despair and even anger are all symptoms of depression and they are very real and justifiable feelings to have about cancer treatment. There is nothing wrong with asking for help and talking to someone about it and even the right medicine can make a huge difference. I was dealing with anger and resentment after surgery and feeling helpless and hopeless. I called a psychiatrist who had helped me with some postpartum depression and she put me on a small dose of Prozac. I had taken another antidepressant after having my first child a few months and had no trouble weaning off of it. I figured it could only help me now as I face this battle. And it has helped. She allowed me to dump all of my real feelings (the ones I haven't even shared with my husband) and it felt better afterwards. Even though I have a husband and two children living with me, I have to maintain some sort of normalcy. This means that I'm holding in the darkest of my feelings. So, I can't speak to being alone p, but please know that there are people on this site who care and support you even if it's virtually! Have you check the American cancer society for support groups or the Look Good Feel Good program? They have them all over the place and you get a bag of donated (Good quality) beauty products and they go,over with you how to deal with various side effects of treatment and how to deal with them. I haven't gone yet, but I'm signed up for the end of October. He also have weekly support meetings and yoga classes. I've never been big on support meetings, but I may try one of the yoga classes just to get out of the house
Sending virtual hugs and hoping you can find your way through this!
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brightness, I too am sorry for how you are feeling. It's so damn hard and scary. I was having horrible panic attacks when I was first diagnosed that I almost went to ER. My MO put me on Zoloft and after about 4 weeks I was much better. I hated taking it but am glad I did. I had anxiety before this started and this fricking cancer just made it worse.
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brightness, i am sorry that you're feeling this way but also, it's valid to feel thise things because of chemotherapy. i worry too and right now knowing you ladies are doing chemo with me gives me strength.
i'm doing neo-adjuvant chemo for 6 months (stage 3)... it seems most people here are done with surgey and doing post-surgery chemo. To be very honest sometimes i feel sad at the thought of being the only one left on this thread once everyone else finishes their chemo treatment and moves on to the next step for treatment etc. i have a loooong way to go with treatment as chemo is only step 1 for me. and i'm happy for people who finish theirs but it helps knowing there are people going through the same thing you are. Maybe the rest of the world is moving but we're also here moving with you. in our own way, we have this little world that is moving at almost the same pace as your world is. and there's comfort in that. you're not alone.
but also you have to allow yourself the bad days. it helps.
things will get better and we will be able to pick up where we left off... in the meantime, we're here to listen if you want to get things off your mind.
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mkn, I am doing chemo first as well -- I will be doing surgery following chemo as well -- I hope that helps you feel like you are not alone
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mkn86- I’m also doing adjuvant treatment — I’ve only had my first round of chemo-5 more to go- and then I’ll be at the surgery stage (lumpectomy v mastectomy not known yet) and I already know it’ll be a year of herceptin. But being on here and reading the support from everyone is really helpful.
My SEs have been pretty tolerable. I’m 11 days post my first round of Chemo and I’ve developed a small rash on my side and inner elbow?? I guess I should call MO. Has anyone else had this? I also still have all my hair which I know isn’t for long but don’t have it in me to do anything yet. One day at a Time.
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mkn - I’m from July and August groups and I do 12 weeks of taxol and most of the people in July finished their chemo, some August group are there, now I’m coming over to September group, hope you gals don’t mind.
Brightness- I have many of the depressed moments the last few months, I kept telling myself I will reach to the end of the rainbow in few months and I will have my life back to as normal as I can. I know our life have changed however we still can make things turn around so we can enjoy what we have.
Hope - dong over look rash they can turn into bigger problems, call your MO.
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I appreciate the kind, understanding words everyone. Luckily, I felt somewhat physically better in the afternoon, which lifted my mood a little. I don't make a good sick person, but my SEs aren't nearly as bad as some. And you're right, at least I've already done surgery, so once chemo is done, I'm on to radiation, then other than finishing out the year of herceptin, hopefully my life can getting back to whatever my normal will be after this.
I'm truly thankful for this site. It helps knowing there are others who actually do understand, although I wish none of us had to experience this.
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Brightness- Yes I told all my friends that I hope they won’t have to go through my experience. This isn’t something good to go through at all.
My mother in law visited me yesterday she told me don’t think about BC then you feel better. All I can say if you aren’t in there, you wouldn’t able to know how we feel. There are day I feel good in the morning, all suddenly I can down and feel depressed. I wish I can be more stable and happy
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travel_girl, brightness, hopeful, and paulette, thank you ladies! if i could give you hugs right now, I would.
brightness, we are here for you. never ever forget that. we're going through this together
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mizzprizz, you should be a poster girl for " how to rock a wig" seriously natural looking. I haven't started my AC yet but have a wig appt on Saturday. So hoping I get something close to mine. I'm going to go the eyebrow wig too as I'm a nurse and get quite close to people at work and would feel very self conscious with feathering or drawing my own.
Rljessu, hope you find peace in making your descisio.n. and i hope you have support amongst friends and family whatever you decide.
JD, hope today has been a better day for you
Hugs to all
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Thanks for all the kind words about the wig. It's a lace front, and the brand is Raquel Welch. I think they said the style was called whimsy.
I still have a rash all over my head and now it's on my chest. Doc isn't too worried about it still.
I can't kick the diarrhea. Just when I think the lomotil has it under control it starts back up again. This should be my "good week", but this cycle I'm still sleeping half the day and fighting the Big D.
rljessu; Do you have Lyft or Uber in your area? I have used Lyft when I didn't think I should be driving. My treatment center also offers rides to and from appointments. I also know some insurance companies assist with transportation. Is there a social worker in your doc's office who may have some resources for you if you need them? Local non-profits also may be an option. I used a local grocery store's online shopping option last week, it was a life saver. Order online, just drive to store and they load it all in the car.
Last cycle on my "good week" we went to Disneyland. This coming weekend, the day after infusion number 3, I have an offroad/camping trip planned. Hoping that like the last two cycles, the first 3 days are good so I can go. Fingerscrossed! Yes, I am an adventurer who doesn't like to sit still long...which is really making this whole thing hard on me.
Brightness: hang in there, this group has been great with assisting with not feeling so alone. Keep reaching out to us.
Paulette: Who did you not strangle your MIL?
MKN, I'm doing neoadjuvant as well. You are certainly not alone.
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MzPriss - my second cycle was 'off' and I ended up having GI issues through most of it mostly the Big D and general gurgle, gurgle, gurgles. The last week of the second cycle, which should have been my 'normal' week - was only okish. I can totally relate - I have not traveled since early August and as my name implies - I am a traveler - I am going a bit stir crazy -- camping may be interesting -- i like the creature comforts of a bathroom during this time
Paulette - of course you are welcome! I had joined this group very early on, as I knew I was late to the August Chemo group -- so glad to have you as part of our 'wish we weren't invited' party ...
Forgive me if I mentioned this -- I think I did on another thread -- I wanted to mention that did start Acupuncture just before this third one and then had it the day after 3rd infusion - and all I can say is have no idea if it is the Acupuncture or other - I just feel better this time than both #1 and #2. I already feel better on day 6 of #3 than I did all of cycle 2. I am going again tomorrow -- acpuncturist said good to the stomach and taste issues early in the chemo cycle. Could be so many things (and crazily, I have thought -- what if the chemo wasn't really chemo this time !! -- ok, yes, we can drive ourselves crazy ...)
Back to acupuncture -- I had it on the list for awhile ... and truth be told -- the idea of yet another 'poke' was not anything I could mentally handle- as things calmed down (numerous appts, etc) I was able to get it in. To my surprise, the needles are really small, you can't feel them and I fell asleep during the last session. I also slept 13 hours that night (after acupuncture and a workout) and it was fantastic.
I would encourage anyone to try it if you are able and your team says it is ok. I will continue to use it through chemo and to prep for surgery.
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Travel_Girl- Hope you don't mind me asking, how did you find the acupuncturist? Is it covered by insurance? I've never had acupuncture before and I don't know where to even begin looking.
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Travel Girl - do they have any concerns about needles when your wbc count is low? My PS prefers I get my fills the third week after chemo when my counts are likely higher because of the needles. Of course they are going in my further. Just wondering about that.
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OCD - I wonder the same thing also, I would worry about wbc low with needles but I’m getting my flu shot tomorrow and it is okay with my MO.
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Toughcookie, OCDAmy and Anyone else interested:
I started with a referral from MO to the Integrated Medicine Center as part of the Univ Hosp System my MO is affiliated with. I called them and asked them a bunch of questions on timing, how it worked, etc.
I wasn't thrilled with the hours they had or the scheduling options (ie not on-line) ... so I did what I do best and started online researching and asking everyone I knew for a referral to acupuncturist that specializes in oncology. I found one and scheduled my first one on my best third week ... she was happy to see me that week, because I was more comfortable - however - she did tell me that the bigger impact the closer you get it done to chemo (they all said the same thing, it was pretty consistent). It was REALLY important to me find someone experienced with cancer and chemo, breast cancer even bigger bonus - I was willing to drive for that 'speciality'. Ask your teams and then ask other patients in your area.
After trying it on the good week, knowing the needles are one time disposable and the needles are tiny, i mean tiny - less than a hair size - I said, heck if it can help with GI and taste issues (throw a bit of chemo brain in) - I am willing to try it - MO had no issues. My GI issues and tongue/taste the second round wasn't great - so I was VERY willing at that point to try options.
It is not covered by my insurance, it is deductible expense as part of my medical account, as I had a referral (as is massage if you have a dr. referral).
I hope it helps - happy to answer any other questions -- being the acupuncture guru that I am
... One tip I did get -- is that you know a good one by the types of questions they ask you - long intake and they ask a lot of questions. My person spent almost 90 minutes w/ me to get to know me, the treatment, what issues I was having, etc. Type of chemo, dense, frequency, etc. She was extremely well versed in the different types and had an understanding of the different types of SE's etc. She wanted every detail .. timing, reaction, etc. So if you find someone, do a test run and see how much they ask you -- that is how to tell the good from the 'ok' -- per my network.
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Thanks travelgirl. I think I'm going to try it.
Is anyone else noticing acne with chemo? It has happened after both treatments at about day 11. My nose and cheeks are covered in tiny red pimples.
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Tough - I got pimple, just one this time. And I learned that I should not pinch it. Lol
Travel - as long as you MO approved, I will ask my MO also. I would like to have some improvement on my taste buds and help my fingertips.
All my fingertips are getting so sensitive to hot and cold, anyone got this problem??
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Toughcookie, I got really bad acne with my first round, and it hasn't come back. I also put dermalogica clear start moisturizer on my tzone around day 4 now. I thought it had something to do with steroids, but if yours didn't start until day eleven, maybe it's just the body getting used to chemo
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Hi All, I too have been lurking and am amazed by what we are all going through. I have round 2 of chemo this Thursday. 4 cycles of AC followed by 4 cycles of taxol then bilateral and radiation.
Does anyone else juice or eat anything special? I'm juicing like crazy and I stopped bruising since I've been drinking it. I want to believe it is making my vascular system stronger but at least it tastes good. I can't stand the taste of water anymore.
If anyone else is doing AC then T, pleases reach out.
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PauletteK - I have been sucking onhoneycomb and it helps my tastebuds. I mix some coconut oil and vitamin e together. Then I smear it on the hineycomb and smack that on the sore spots on my mouth. The combo of honey, coconut oil and vitamin seem to heal them and the honeycomb is like wax so it holds the goop in place. Hope you mouth feels better soon!
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I am doing acupuncture too. But, I've been seeing someone for years for a back issue so I already trust him. My MO said no acupuncture due to the risk of infection but told me she had no problem with me getting in an airplane with the germs. That's when I decided to go get acupuncture but I'm skipping flying for now.
My acupuncturist recommends coming in one week after chemo and said it will help with balance and energy flow. Not sure if that helps anyone but thought I would share. And if you are afraid of acupuncture, it is probably one of my peaceful thirty minutes of my week. Xoxo. Je
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Tough cookie - day 11 and I have a HUGE pimple on my chin. Yuck! Like it's not bad enough:
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