Starting Chemo July 2019
Comments
-
Happy Wednesday everyone -I hope everyone has a good day today. This time next week I’ll be in the midst of A/C #2 but that’s next week not today so I’m going to work on enjoying this day
Britgirls-how soon is the concert?
I have a curious question - if you all don’t mind me asking- I was wondering how old everyone in our chemo group is? I’m 48 .
0 -
Hi, I am 66 and will be 67 in September.
0 -
Happy Hump Day!!! Been a lil while since I’ve posted. Monday will be treatment 3 of my A/C and dread it 😩 if he could just get my headaches under control. But I had to shave my hair Sunday and I too am a G I Jane 😩😩 I already had short hair but that was hard. I think my hair dresser cried more than I did. Yesterday I should have left work lil earlier than I did cause I paid for it last night and today. Worn out and feel blah 🙄🙄
I hope all of you are doing well enough and are making it through ok mentally. When you feel bad and in pain after a while it gets to you. We have each other to get through this. One day at a time!! I keep being told you can’t quit and it’s hard!!! Believe me it’s so hard, but I and WE HAVE TO JUST KEEP SWIMMING
0 -
I joined the GI Jane brigade too, yesterday! Unfortunately, though, considering how quickly what hair I do have is falling out, I look more like Sinead O’Connor with mange. 😋
Hope you all have a good day, with lots of sleep tonight! One step at a time, one hour at a time, this too shall pass.
Diane
0 -
Hi Everyone,
It's been a while since I have been able to post anything. I hope you are all doing as good as you can be
Someone asked for ages I think. I am 41 almost 42. If anyone ever struggles with chemo induced constipation, I figured out the magic potion with help of the onc nurses. Warm prune juice & milk of magnesia. The happiest moment of my life was when this kicked in 4 hours after I drank it. There is no such thing as TMI anymore lol. Be sure to stay close to a bathroom! I felt like I had never had chemo after that. My appetite came back. I even went to a pool party on Saturday. It was a magical day of sunshine & floating! Of course I was wearing a hat, tshirt, & completely covered in sunblock. I covered my port with gauze & tegaderm to keep it dry since it was new. That worked perfectly!
That night my left hand started to hurt & swell. We called the nurse line who told us to go urgent care right away. I had to be admitted overnight to get antibiotics & fluids through my port & was monitored. Sunday morning I had an ultrasound and they found a blood clot in my arm. It was nothing serious according the dr & it would clear up on its own. When I left the hospital I had very little pain but the swelling was still there. I get home Sunday evening & my hand & arm are on fire. I called the advice nurse who called the oncologist. Again they said not to worry & take OTC pain meds. That did not work for me. I took my remaining pain meds I had left over from the last surgery. Monday my oncologist called in a script of more pain meds for me. I was in tears at this point. I didn't expect for this to get worse but better. Long story short: this takes 1 to 2 weeks to clear up. I've been icing, heating, elevating, taking antibiotics using the prescribed nsaid cream & pain meds, and get up and move around. I am so thankful for the treadmill on these hot days!
So if any of you end up with a superficial thrombophlebitis, I feel like a pro now. The key is to be patient and trust the process. I was hoping to work this week but my arm & hand had other plans. The ironic thing is the IV I had for my port placement caused this. Well at least I won't have to worry about getting IVs again now that I have the port.
I had my 1st therapy appt yesterday. I highly recommend it! My homework is to do 10 minutes of meditation & chair yoga while my left hand gets better. I'll start doing regular yoga once all is well. If you all have any ideas or videos for guided meditation, chair yoga or regualar yoga you like on youtube, please share
My anxiety has been so bad this week because of this bloodclot. I am so glad I went!I received a gorgeous package goodies this week that really cheered me up. If any of you are interested in a free package of jewelry, a scarf & a hat: request a package at: https://chemocessories.org/request-a-set/
I may be joining the bald brigade this weekend with you all! My 2nd AC is Monday. I hope everyone is having an awesome day with minimal side effects.
Love & Light,
Danyelle
0 -
Hi all. I hope everyone is doing okay. My second chemo definitely knocked me on my a$$. On Sunday I overdid it by going out. I helped a friend by sitting in the car with her son while she shopped for his birthday present. We then grabbed dinner and she dropped me off at home. Maybe two hours total, all sitting. I was completely zonked for the next 36 hours. Then came the lovely Grastofil bone pain, two days earlier than when it peaked last time. Claritin and Extra Strength Tylenol did nothing.
Needless to say, my head went to some pretty dark places Monday night. I was exhausted but couldn't sleep. There was no position that was comfortable and I was questioning why I was putting myself and those around me through this.
I called patient support on Tuesday. I also forced myself to leave the house to pick up groceries. I had found walking helped with the pain the first go around. Once again, I should have just stayed home. I spent half an hour walking at a snail's pace in the grocery store, drenched in sweat from the exertion.
Luckily, last night appears to have been a turning point. I woke up this morning and felt normal... AND I had slept through the whole night. No tossing and turning from pain. I fell back asleep around 10:30 and didn't get out of bed until 3! I'm still tired, but definitely feeling like I have turned a corner.
My oncologist called me this morning and faxed a prescription for morphine to my pharmacy. I'm hoping that will cut through the pain. She's also decreased my Grastofil from 7 days to 5, so today is the last shot. Yay!
Keep up the good fight everyone. ❤️
0 -
Hi ladies! After a two week delay I start my first infusion this Friday, 8/2. For those who ice their hands and feet for neuropathy, do you ice just during the taxotere? I will be having Cyclophosphamide as well and wondering if it’s necessary to ice while getting that. For those who don’t have the socks available at your facility hoe are you transporting the ice pack for it to stay frozen?
0 -
Today is my 2nd day after my first round of chemo (July 30). I have just been a little tired, more than usual, and a little achy this morning, but have not felt sick or felt any different whatsoever. I’ve been told that I may be feel sick on the fourth day, but I don’t know. I also have not taken any nausea meds, because no nausea. I also did not have the Neulasta shot after because the shot is $1,800 co-pay. Ouch! So they are looking for a substitute for it. I hope the doctor’s office lets me know today what the substitute is and when I come in for it.
Take care!
0 -
Beastmode19 - the cancer centre I go to provides the iced mitts and slippers. I only wear them during the Taxotere.
0 -
Kjchico please ask your MO’s office if there is any grants, organizations or anything that will help pay for the meds. Also I haven’t done it but maybe search this site for financial help. This site has been so much help to me because this is the only place I’ve found info that is beneficial. I received nothing from my MO’s office at all regarding any info help advice nothing. So search and see what others have info on. It sucks that we pay all this money for insurance and still have to pay out the butt 🤬🤬
Fairydragonfly I def understand your mind set and frustration. I cried all night last night because I’m so tired of feeling this way. It gets to you and grabs ahold of everything. I just prayed and asked God to get me through this, to keep me strong and not give up, and to also guide my steps as far as my treatments and the medications,that I’m making the right decisions and if I’m not to intervene and let me know.
0 -
Fortunately I am on Medicare and if I had to I could afford the shot, but I think it's just too much. I am awaiting a callback from the doctors office (I talked to the doctors assistant this morning) to see if the doctor wants to see how my blood counts are now. The alternate shots have been approved. Hopefully I will hear back soon.
Update: I talked to the Drs office - will get my blood count on Tuesday and we’ll see how it goes if I need the shots now. We will probably do the same for next round.
I still feel great and hopefully will stay this way. ❤️🌸
0 -
0 -
Gosh, I had to take notes in order to write to you guys as there's so many of you that I want to talk to:
Fairydragonfly, thanks for the duct tape tip! My scalp looks like a globe of the world right now with bald and stubbly patches all over. I am so very sorry to hear about your debilitating fatigue and pain. I hope you can get some relief from whatever drug combo works for you. The morphine should definitely do the trick, it can cause constipation though so maybe have Starr's (Danyelle's) warm prune juice/milk of mag on hand. Hang in there!
Melmax: Welcome to our group.
I'm on the same chemo regimen as you. I've had two of my four AC treatments and didn't notice much difference between treatment 1 & 2. My side effects have been nausea on days 1 & 3 and generally feeling blah the first 5 days. My next AC is next Tuesday.Kjchico: How are you holding up after your chemo? Hope all continues to go smoothly.
2019whatayear: Earth, Wind and FIYAH is tonight! I'm breaking out my Gigi wig!! BTW, I was 43 at first diagnosis and 48 at second. I'm 49 now.
dvh: "Sinead O'Connor w mange!!" Lmao! I spit out my coffee!!!
I too have the mange! My family loves me though. The kids gathered round like monkeys to pick over my head when I said how easy the hair slides out. I guess we really are a family of monkeys. 
Starr: Sorry that you ended up in the hospital. We just have to take our good days when we get them and be vigilant to side effects. One day at a time! Thanks also for the chemoaccessories link.
I booked a trip to Cancun for my 50th next year with my sister and best friend. It's next April but I really needed something to look forward to.
Lots of love to you all and best wishes for good health/minimal side effects.
Natasha (or Britgirls ... I'm fine with either).
0 -
Jjpope-Love those words of encouragement. It really lifted me up today. I am meeting with my surgeon to discuss 3rd surgery today after finishing up with my chemo.
Kjchico-I truly wonder if neulasta is really needed. After my final chemo, MO told me it was not necessary to give me the Neulasta patch, that my counts would bounce back fast. Go figure. Wishing you minimal se's going forward.
Fairydragonfly-hope you will continue to feel better. I know how discouraging it can be. Even doing small things can leave you quite fatigued and overwhelmed. Have to try and pace yourself. I would do what I needed to do, then found myself on the couch for 2 hours. I kept telling myself, "this is only temporary and it will come to an end and will be worth it". I was a mess after first 2 chemos, then MO added iv fluids and cut chemo dosage by 10%, made a world of difference with minimizing se's.
BeastMode19-good luck with your infusion this week. I took Cytoxin/taxotere for 4 cycles and did not do icing. I don't have any sign of neuropathy, thank God. Final infusion was July 10th. Icing was never brought up to me by MO.
Britgirls(Natasha), think of me tonight at EWF. They are one of my favorite bands. Have fun. I think it wonderful you planning a trip to Cancun next year. Hopefully, all of this will be a memory at that point. Also, you do not look your age, girl. I thought you were 35 from your picture.
Starr- hope you will be feeling better. Having to go to the hospital really sucks. Good luck with your second A/C.
Wishing everyone a great day today. Prayers and hugs. Pat😳
0 -
Hi Newbie here. I had my 1st treatment 7/25/19. Other than fatigue Im ok. Just feel alittle off.
0 -
im 48 also
0 -
Hi Everyone,
It’s been a while since I posted....I’ve had a rough week with severe diarrhea which resulted in dehydration and a trip to the ED for fluids. I think I’ve finally turned the corner and have things under control. I didn’t take any meds until I started the symptoms and hindsight I think next time I will. Hopefully that will allow me get ahead of the side effects. I’ve also lost a bunch of weight that I now need to work on putting back on to prepare for the next round.
There are so many updates since I last posted I won’t try to comment on everyone but I welcome the new members here.
I am 62 yrs old. It is amazing to me the number of younger women that are coming down with this disease.
Britgirls, I hope you had a blast at your concert last night. You and Gigi must have rocked the place!
Fairydragonfly, I hope the morphine helped. They gave me some in my fluids in the ER which helped with my headache.
Sglover, glad your first infusion has had minimal side effects. Days 4-8 have been my hardest so far.
I don’t have any neuropathy and didn’t wear the ice mitts. I think next time I’ll chew on ice though as my mouth is feeling a bit strange. I am rinsing with baking soda and water during the day. I also have had two bloody noses.
Jjpope, thanks for the uplifting message! We all can use it.
I’ve learned so much from all of you. Thank you for sharing and caring.
Julie
0 -
Second round of AC today. Went the same as first time. The chemo nurse said symptoms won't be accumulative and I should probably expect the same after each AC treatment. For me that means fatigue on the third day after chemo and constipation and heartburn thereafter. I have medicine for both.
During treatment they give me anti nausea medicine and a steroid through my port before they start the chemo. I also get a Neaulasta injector on my arm before I leave. My white counts are high after first treatment, red counts normal.
Day 15 and I still have hair. I've told everyone that it could happen any day now so they won't be shocked. Doctor said don't cut my hair again because it may just thin out and I won't go bald. He's such an optimist. I'm prepared for bald. Hats are ready as it could happen within the next 30 minutes. I've already cut 12 inches off and now it's shoulder length. He also said he's never had a patient in pain when their long hair fell out. I hope I'm not his first. LolRecipe for constipation courtesy of my chemo nurse:
3/4 cup warm coffee, add spoon full of butter (stir to melt), add 1/3 cup prune juice. I have all three but never thought to combine them. If I'm able to drink it without throwing up, I'll let you know. 😜
So grateful for all of your posts. Sending love, hugs, and well wishes to everyone. 💕🤗
0 -
Hope everyone is well and having a lovely Saturday. My big victory today is that I wore my wig Veronica in public. At the moment I still have hair-- at the moment I don't have high hopes that it will stay intact once I go thru A/C #2 on Wed.
Melmax, you are 1/2 way done with the A/c! Congrats!
Julie glad to 'hear' from you, hope you are having a good day.
Sglover71, welcome I hope you are having a day w/o feeling pukey
Natasha I hope the concert was amazing!!!
Hope you are having a pretty good day today Beastmode
Jpope , Fairydragon, Kjchicco hope all is well
xoxo
Victoria
0 -
Came here to say. 3 days before my second A/C treatment my gosh darn period graces me with it's presence! Haha funny ovariies. We had a deal last month was your last hurrah!
I guess it could be worse this could have happened when I got the chemo treatment. I have like the worst cramps- I"m glad I had one lone last pain med. left over from my surgery to take today. Bah Humbug!
I hope everyone is having a very good Sunday. I'm thinking about all of you!
xoxo
Victoria
0 -
Hello fellow chemo warriors!
sglover71 You can do this. You’re doing great!
An update from my last post. Tried the coffee and prune juice mixture yesterday and as of this morning no bowel movement. Today I will be brave and add the butter. 😁 Two days after second AC treatment and head hair definitely coming out. It's like brushing a pet. Not coming out in clumps just all over shedding. No scalp pain or tingling yet. All over body hair is coming outtoday as well. Neulasta injector went the same as the first time with no issues. I take two 24 hour Claritin, one in morning and one in the evening as prescribed by my doctor to ward off bone pain that Neulasta can cause. Just putting my experiences with AC treatment out here for newbies because fear of AC is real! Your experience may be the same or different.
Sending love, hugs, and Strength to all of you! 💕🤗
0 -
Victoria, I had to laugh when you said you went out with your wig on yesterday. I tried mine on at the house and my 28 year old son came in unexpectedly. I didn’t say a word and he said to me “Mom, you got your hair cut, looks good!” We had a 10 minute conversation and then I pulled my wig off. I still have my own hair but he was absolutely shocked that I was wearing a wig. Made me feel good that at least it didn’t look like I was wearing a wig. And as for getting your period during chemo...there should definitely be a law against that!
Here’s to minimal SE and finding laughter in your day!
Julie
0 -
Flnana2 - sorry to hear about the er visit. Hope you are doing better. I had my 1st experience with dehydration yesterday. Because I take my blood pressure daily at 103/74 with a pulse of 103 I knew exactly what was wrong. So I downloaded one of those water apps as a reminder.
Melmax - great to hear the ac isn't accumulative. My next one is Thurs. My insurance would not approve the neulasta device so i have to go back to my dr 24 hrs after chemo for the injection. Bummer.
Was expecting my cycle to start this week, so far nothing. Would be nice to not have my period while going through this. Yesterday was the 1st day I felt a slight pain. Just took a Claratin and I was good.
Hoping all a Happy Sunday.
0 -
Welcome sglover71!!!
Tomorrow is my 3rd AC treatment and dreading it!! This past Friday was the first day my headache didn’t hurt since then Weds of my treatment on the 22nd. Will be having a come to Jesus meeting in am with MO. Something has to give. Had to shave to the rest of slivers of hair I had on my head cause it was still coming out so bad. So I look like a hot mess. Had a normal (if thats possible)weekend. Got my sons school supplies OH NO SCHOOL STARTS SOON. 🥴🥴
So how are y’all holding up mentally? I’m the strong one, the one who takes care of everybody else and I’m getting so upset when I feel alone and laying in the bed all the time. I guess my husband feels Ike it’s better that he leaves me alone because I’m so tired and in pain. I tried to explain it to him like I felt like I was battling this alone and he doesn’t understand 🤷🏼♀️🤷🏼♀️ Are you going through anything like that? I feel like he feels like if he doesn’t acknowledge it it’s not there or happening. I just dont get it........
0 -
Jj, I might be able to offer some insights into how your husband may be feeling. I tend to cope with stress by shutting down and rely on denial to get me through. The more I care, the harder it is for me to show emotion. My husband is a natural caretaker and goes into overdrive, to the point of smothering. Believe me, I have been the worlds best nurse to a dozen people, but if my husband were the one that was sick, I honestly don’t know how good a job I would do. Sometimes when you care so much, fear can close you off. I bet he thinks he’s helping because maybe he would prefer privacy if he weren’t well. I hope that the case and that he realizes soon that you need more from him.
0 -
Hi everyone!
I had my second round of TCHP on Friday. So far I've only felt a little fatigued.
Victoria- I'm sorry to hear you got your period again before your second treatment. My period arrived two days after my first round of TCHP. I was like seriously, my body is going already going through so much right now already haha.
Sglover- Welcome! I'm glad that your first treatment wasn't too bad.
Julie- You must have a pretty nice wig if your son thought it was your real hair. One of my biggest fears is that other people will be able to tell that I'm wearing a wig when I am out in public.
Jjpope- I hope your third AC treatment goes well tomorrow!
Shelligirl- I agree that people cope with stress in different ways.
I'm 30 years old.
Hope everyone can enjoy the rest of their weekend with minimal SEs!
0 -
Oceanbreeze. I don't think you need to worry, people are mostly too busy thinking about themselves to pay attention and also most people walk around assuming no one is wearing a wig-- unless it's halloween. So it's very unlikely anyone will suss out you are wearing a wig--even if it is a wild color- they'll just think you died your hair.
Julie I wore my wig and my 19 year old son didn't notice for a good hour and then he said: "When did you get your hair cut? It looks nice."
Aww.
My wig is somewhat darker than my current hair (which is dyed) and has really nice gold highlights the like I would not pay for and it's way straighter than my hair ever is - I wore eye makeup and that help balance the darker color (which is more my natural color so my skin doesn't look washed out). Really my wig is what my hair wishes it looked like normally. Downside to a wig is , it's summer and a wig is a fancy hair hat.
Jjpope. holding up mentally. 1. I tell myself this is my season of cancer. Seasons come and seasons go. This one will go too. 2. I write everyday - just rambling stuff and then I finish it with at least 5 things I am grateful for on that day. Since I already had surgery and the cancer was removed and all the tests I had b/4 starting chemo didn't show any other cancer I always write: I'm grateful for my cancer free body. 3. I walk everyday. Sometimes I walk a nice long walk outside and get in my 10K steps all at once. Sometimes I have to do several short walks. Sometimes I have to walk around my bedroom - but I swear I can tell when the endorphins from movement hit my brain after about 10 min of walking.
Melmax - I hope by the time you read this you have had a quality trip to the bathroom
-Victoria
0 -
Shelligirl thank you for a outside opinion! I just feel so lonely esp when I sick and I’m the bed. I feel really alone and like I’m shut in my room in quarantine. I know he isn’t used to me being down because I am a strong person and dont allow anyone to see me weak or broken, not put together. I don’t let anyone know how I really feel right now I try to make them think im ok so they don’t worry. But I do let him know how I am. Our family functions differently than most. Our backgrounds are fire fighting and law enforcement so we’re used to taking care of others and keep on going. I’ve always been the head of the house if you will because when hes gone it’s 24hrs at a time or when bad weather etc hits he’s gone and i take care of everything at home, plus im at our volunteer FD helping. So we’re not normal 😂😂 but sometimes it gets in my head that he doesn’t care 😢😢
2019whatayear thank you for your words! I too am like you with how everything went for me. I know 100% I am blessed and I have to walk by faith, but sometimes I back slide 😩😩 I get down in my head and over think. I try to stay as normal as possible with working and routine but when the SE migraines/headaches get too bad I’m stuck in the bed and can’t do anything. Once I’m able to function again I go back to normal life as much as possible. Just get hard sometimes.
Oceanbreeze7 thank you for the well wishes and I’m glad you’re holding up well!! Keep it up.
Flnana2 I hope you’re feeling better and got some relief 💕💕
Fairydragonfly dvhmouse starr42 how are you?
Britgirls how are you and much love and luck for you Tues 💕💕 you and I are pretty much on same weeks.
0 -
just had second chemo on Thursday (TCHP) and feeling typical yucky. I hate that my husband has to take on so much more, doing his usual and my stuff too. I feel lazy and useless. I know it’s temporary and intellectually I know it’s okay but I can’t seem to fight the feelings of being worthless- not in a depression kind of way, just feeling gui
0 -
Rubydream I def understand! It’s hard to normally be the one to do or take care things and then have to have someone else do it. You’re right this is short term and we just have ride the wave and know we’ll come out better than we were before. 💕💕
0
