Starting Chemo in September 2017

mkn86

hi tough cookie, try eating food that is easy to digest: bananas, steamed rice (or congee), bread (no butter

toughcookie_21

Thanks all, I called the MO office today because the pain and diarrhea got worse this afternoon. They reminded me to drink lots of water and eating BRAT banana-rice-applesauce-toast which is pretty much all I've had since Saturday (I've avoided he applesauce because that can make you gassy) But it isn't helping. Every time I eat anything, it hurts. Hopefully this will pass soon!

Brightness456

Hi everyone. I had the port placed yesterday. It hurts a lot more than I anticipated. Does anyone know how long it takes to heal? I get my first chemo in a few days and I'm dreading the pain along with the chemo toxins now. I feel like it's pulling every time I move or swallow or try to turn to far. It's just under my collar bone (clavicle?). For some reason I thought it would be a bit further down.

hopebringscourage

Brightness-I just had mine placed Friday and it was so much more painful than I anticipated. BUT each day it feels so much better-I literally stayed in bed Friday-Sunday afternoon (my daughter made me get out). I used ice which helped and Ibuprofen. Good luck! Do you have Emla to put over the port site before your treatment? I have my 1st trearment Friday I am nervous about them touching it...just know the things you feel are normal-I had all the same pains within 24 hours I even wondered if it was in wrong. I called the IR department where it was placed and they said typically it is tender and at times more sore in younger or even thinner women.

Brightness456

Thanks for responding Hopebringscourage. I have lidocaine to put on the port area, but it's all bandaged up. I have to read the instructions about when to take the outer bandages off, but the steric strips stay on until the nurse takes them off so I'm not sure if the lidocaine will help anyway

OCDAmy

tough cookie, ugh! I hope you can get the diarrhea under control. Can your MO give you something stronger than Imodium?

Brightness, I thought the port hurt too. Mine hurt more in my neck where it went into the vein. After about three days it felt much better and now I don't even think about it. My incision was closed with glue, no bandages. I have lidocaine for it and it really didn't hurt at all for infusion.

Travel_Girl

Brightness - ditto on what OCD says -- annoying for a few days - neck first then chest ... then it goes away

MzPriss

Brightness, the port was way worse than I imagined it would be and 2 weeks later it still is bothersome.

My diarrhea is still not under control! Even with lomotil and imodium. I was told to alternate them....still not working!

I went back in yesterday, they filled me up with fluids and ran blood tests again. Last friday my WBCs were way too low, yesterday they were back where they should be. Yay.

We leave for vacation Saturday. MO says it's okay. 2 days at Huntington Beach, 5 days at Disneyland. I was a little surprised that the MO said no flying....but Disney was okay. Things that make you go hmmmm. We are staying on property with a balcony over California Adventure.....my days may end up just sitting out and watching....but it beats working or being ill at home. I'll rent a scooter if I have to, but we are going...I turn 50 next week.

toughcookie_21

Happy birthday Mzpriss! I hope you can enjoy the vacation!

My port bothered me for about a week. Especially in my neck where the tube went over the collarbone, It still catches on clothing and the seatbelt. There really is just a thin layer of skin over it and you can see the tube easily over my collarbone.Now it's just mildly uncomfortable.

I am happy to say that *i think* the cramping and diarrhea is gone. I ate oatmeal for breakfast this morning and my stomach doesn't hurt nearly as bad as it did Saturday-Monday.

hopebringscourage

Brightness-I had to.leave that big dressing on for the first 48 hours-then just a piece of guaze with tape for 2 more days-then just the steri stripts. The lidocaine should definitely help.

Milkweed93

JD - I am just getting the hang of posting. I thought I replied last week and just posted another reply because I didn't see it and the mods reminded me to post. OK - here goes again. About the pit zits, it looked like a possible staph infection. MO was wary to prescibe abx, so I got them just in case it got worse, but did what she suggested which was wash the area with Hibiclens. That seemed to help a lot, and they are now almost gone. I have no idea why they appeared. Maybe because it was really hot the weekend they showed up, and we don't have air conditioning, so it could have been all that heat. I love your hair styles by the way. I had shoulder length hair before too and went to different shorter styles gradually. Now it is all off!

Milkweed93

Brightness - I feel you!! It is a hard reality check. I'm glad to have found this community though. (I had a hard time posting the first week, but I think I have the hang now.) We shaved my head last night, and that was my last reality check. I am definitely a cancer patient now! Chemo brain and all.

Milkweed93

Wow Amy, that is a great fortune!

Milkweed93

Amy - It seems we are on the same treatment plan about 3 days apart. I do radiation after too. How long after last chemo round does radiation usually start? I did the head shave last night on day 14. It was just coming out in clumps and I didn't want to wake up looking like Gollum from Lord of the Rings! My hubs and daughter and I had some fun with it. I'm actually starting to work this week (I'm a massage therapist specializing in Lymph Drainage).

OCDAmy

Milkweed: I am glad to have another person on the same chemo. I get round 2 on Friday and am hoping it won't be any worse than round 1 which was not too bad for me. I still have some hair left! It has been shedding some but not coming out in clumps. It is getting thinner but I can still manage to style it. I don't think it will be much longer until I look like Gollum, just waiting until I absolutely have to let it go. Washing my hair seems to make it fall out more so I have only been washing every other day and then being very careful when I comb it. I also bought a silk pillow case.

Travel_Girl

Milkweed and OCDAmy -- I get round #2 tomorrow. (Wed).

I did my labs and had visit with MO today. I felt great this last week+, so my short term memory has forgotten all the tips for tomorrow (funny how that happens) ... so I am digging up my journal and getting mentally ready to manage the SE's and go back to feeling less than 100% for the next period of time.

I told my MO about the headaches last time and she gave me a substitue for Zophran (a cousin she said, as Zophran may have contributed to the headaches - it does with about 28% of people). Fingers crossed. It is called Granisetron, if interested.

Happy to be getting #2 under way -- just trying to gear up for it all the way around and mourning my 'normal' feeling this eve. Onward!

Travel_Girl

A tip for the idocaine or whatever you are using for the port -- use plastic wrap to cover it after you glop it on. It helps keep it from your clothes and easy for the chemo lab nurse to take it off - she thought it was a good thing to do - I found on it one of these board - might even be above. I tried it today for the first time. My first chemo, they left the port accessed as my port surgery was the day prior. No numbing cream needed.

someone also told me that you can use what is left over for tatoos pain numbing if you are planning any. I like dual purpose items.

JD_RN

Peeps -

I'm sorry I've been MIA I have much to report - but first I must express my condolences to MP on the loss of her mother. The beginning of my life's hell saga 4 years ago was when my father had a massive stroke and he was primary care for my mom who had advanced stage Alzheimer's and was still at home - that was July 2013 and I was starting my first job as a nurse in 3 weeks. Fast forward to Dec 2013 when my dad died suddenly in rehab then my mom died 10 weeks later in Feb 2014 - since then it has been one health crisis after another for me. But at 44 I was definitely not ready to lose both parents and in such a short interval. It rocked my world. This whole cancer journey brings up a lot about missing my parents. In so many ways I could use my parents here right now to give the type of comfort only a parent brings to a child but as a parent myself I am more glad they are not here to see this it would be horrible for a parent to watch their child suffer as I have been suffering.

I was trying to come up with a top 10 list of the best things about chemo to amuse you all but it will have to wait as I am deep in the darkness. It's not about my wife - that will be what it will be and believe me I can't deal with that right now. So I went for my pre-chemo appointment last Friday with my NP and they ran labs. I was called on Monday and was told that my liver functions were trending up (and this was after I spent, no lie, 4 hours trying to track down my home labs to get them to the MO team) and that they wanted me to come in today to get a STAT LFT draw to see whether they were still going up - yes we have a winner - my LFTs are still trending up and my MO cancelled my start of chemo which was supposed to be tomorrow. I lost it - I'm not only at the end of my 12 week window, but I've had so many problems that it's been hurry up and wait. The prevailing theory is that the abx that are trying to kill my slime (which by the way has not yet revealed any sensitivity to abx) are stressing out my liver and its not safe for me to get taxetare in this condition. So after calls with my ID doc the plan is the following: I'm going off all slime meds for 2 days and they will redraw to see if the abx are causing the liver problem. ID doc says he doesn't think it's the abx. But we will see so my infection is now going to not be treated at all for 2 days. We will see what happens when it goes untreated. I know what happened in Houston (my left chest wall filled with puss) but at least I don't have the expanders to complicate things. I'm having lfts redrawn this Thursday and if they are trending down then MO will try to get me into chemo for early next week and at the latest next Thursday. My MO is well aware that this is less of a medical issue and more of an emotional one bc I have a long road ahead of me after chemo and I have been through hell. So now if its the abx then my ID needs to find something else to kill my slime that doesn't toast my liver! Good times.

I need to be sad and frustrated over this since it is all from a complication that didn't have to happen if one of my doctors had done as I asked. And then I need to move through it and not get stuck in the emotions I have right now. But this is what I have been dealing with and why I have been MIA. All of you are never far from my thoughts even if I am not posting - sometimes I am overwhelmed with the need to be "strong" for everyone else and just handle every crappy thing that has been thrown on me. So I am hibernating for a bit and will be back and will bring back my sick and twisted sense of humor. On the positive side I get a drug holiday for 2 days so no "hooking up" twice a day and no GI shredding oral meds. But I still have to flush my PICC twice a day so we don't lose the line while I am waiting to see what is next. I promise I will be back.

Love you all and proud of you kicking cancer's ass while I'm still trying to get started. xoxoxoxo - JD

Brightness456

Oh goodness JD RN, your post is tear worthy. What a cluster f--k of issues. I'm amazed by how healthy minded and strong you sound despite everything. I'd say mourn and grieve when you need to, then get back to kicking this damn cancers ass. Despite all you're facing, you sound very realistic and brave.

I wish we were all here discussing something silly and pleasant instead of this, but I'm so thankful we have each other

MzPriss

JD: That need to be strong is overrated. I hate when people tell me I'm strong and I'll get through this. Getting through this is the only option...strong or not. Let yourself feel whatever it is that your authentic self feels.

PauletteK

JD - speechless all I can do is give you some hugs 🤗

One day at a time my dear friend.

70charger

just popped in to see if I can answer any questions & give my support.

Someone had asked about under arm numbness & when it goes away....It doesn't, The nerves to that area as well as the back of your upper arm were severed when they did sentinel node biopsy. Some feeling "may" return over the next 2 yrs, but a lot of it won't. For this reason you are to only use electric razors from now on, never a straight edge to shave your pits. Also that scar now has nerve endings at the surface & continues to be sensitive.

Re: When do u start Rads? Same schedule as chemo, so if your chemo is every 3 weeks u will start rads 3 weeks after your last chemo. This may vary but seems to be the trend.

You all are amazing, keep it up!

OCDAmy

JD, You have had a lot thrown at you in this brief period of time. I agree with MzPriss, being strong is over rated. Feel what you need to feel (mad, sad, pissed, sorry for yourself). I truly hope they can get this figured out soon.

Travel Girl, best of luck today with #2. Please let us know how it goes, I am anxious to see if side effects are similar or worse for the second treatment. I too have been putting the plastic wrap over the lidocaine, the directions on my rx box said to do that. The nurse that accessed it the first time said to make sure I glob it on there.

Still holding on to my hair, it is getting thinner and very dry but let's see how long I can extend this.

Milkweed93

Oh JD, I'm sorry you are having to deal with all this crap!! I had the deepest, darkest cry last week and I swear it helped with my skin infection. Well, it did clear up after that. So keep it together if you must, but sometimes you just need to cry, scream, throw a fit! Anyway, sending hugs!!

Amy, let me know when you do the deed! I found out my bald head isn't so bad and I'm having some fun with scarves

Travel Girl - sending you lots of luck for round 2 tomorrow!!

mkn86

i hope so too thank you hopebringscourage.

Two more days until follow up check up with my MO. i HOPE he has good news. He wanted to see if my tumor has started reacting to the first session. *fingers crossed*

hugs and courage to everyone on this thread

MzPriss

I met with my new treatment team today. I'm so relieved.

My tumor is shrinking! I'm very encouraged by that. It isn't as hard and it is definitely smaller. MKN, I hope you get the same news at your next appointment!

Today was my first almost normal day....with the exception of the continued diarrhea. My hair is falling out one piece at a time.

TravelGirl: Lots of good vibes coming your way for #2.

Leilals

Hi everyone, had my first chemo today. I was really convinced I wouldn't feel bad. Major nausea, head ache, foggy brain and irritable. They put phenergen in my iv, it helped a lot with my nausea and irritation. Didn't feel anything when they used my port, no pain. Tonight I still have nausea. Also, I didn't think the neuropathy would kick in so fast. I'm used to having it being diabetic. But, holy cow my feet on fire. Took CBD oil for neuro pain and nausea, hope it helps.

JD, sorry you've had such a rough time, not gonna lie, all those hurdles really freaking suck. Man, you must be a super hero. I keep sending good energy your way.

Mzprizz, so happy to hear your tumor is shrinking. Wish your guts would calm down!

I agree with you brightness, JD issues are a Charlie foxtrot!

Charger, thanks for the info on the numbness.

I too will be going for the big shave. I'm going to wear cute hats!

I wish you all the best and hope things get going better. Leila

mkn86

that's good news MzPriss!! and thank you i hope so too! :

Travel_Girl

Chemo Session #2 was uneventful (thankfully) and I just had to take ativan to hopefully go to sleep soon. I have mapped out my plan of attack for day 2 and have the big 'C' front and center and I am now tracking my bowel movements day by day and will pull the trigger on something stronger after 2 days (dietician said 3, however, I am thinking 2). We will see what each day unfolds.

I am tracking Chemo Starting in August Girls (technically I started in late august) -- and seeing they had a bigger impact on #3 -- heard it was cumulative. So we shall see and we will do this together.

Lieilas -- find out what they give you in your IV on chemo day - -mine includes some long lasting nausea meds that seem to work well for me -- I can dig up the name for you if helpful. they said it is great stuff and they only give it to you in IV, don't send you home w/ it. I am sad that you have to suffer w/ nausea on the first day - I really think they have good drugs for that side effect -- please ask -- don't suffer.

MzPriss - yay! you started w/ a new team - i hope to hear great things during the next round and get you back to work - wth the A team in your corner.

JD - humor helps -- so lets get back on that wagon, you will crawl out of the black whole -- because you are Elijah's mom (someone told us that!) -- you will do this for him. Let us help you crawl out - just fake the humor until you make it -- it is a good distraction.

mkn86

I've been reading up on nutrition while going through chemo and tbh there's too much information.

i mean i've been told to avoid white flour and yet there are sources that recommend saltine crackers. or don't eat dairy and sources that say yoghurt and cheese is okay. also some will say mke sure you have flavorful food on days you lose your appetite and then another source or article that contradicts that. i am a little bit close to just eating a donut. pretty much. :

has anyone stumbled on a thread specifically for what to eat during chemo?

i've only seen the other thread on the day-to-day cluster of topics.