Starting chemo July 2014
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Chaosrains, here's a wig I picked up from the American Cancer Society. The one near me had a ton to choose from. I decided to go with something a little different from my natural look (obviously) but I figured now is the time to have fun with it! I'll definitely look for the makeup videos as well.
Coyote: your art is amazing! I'm a big lover of things made from the desert.
KiLin: congrats on your good news!!!
I hope everyone has a great day! I'm gonna try to get to yoga this afternoon, and when I set my intention for my practice, I'll be thinking of all of you
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coyote - your stuff is gorgeous. Love it!
I am coming out of my miserable place this morning...probably helpful to be at home :-) still bummed about delaying chemo, but not much I can do there...
For those interested I bought l-glucamine in 15g packets you take 2xday. Nestlé makes it - think it's called glutasolve. It was kind of expensive. I'm pretty sure I will have extra I can donate when I am done though.
My MO was less bullish on nail icing, but was the one who suggested cold capping to me. And I am now exactly 3 wks past first treatment (second was scheduled for today before The Incident), and I have all my hair. Not totally sure if I should have lost it yet to be honest (I still have hair in other places too), but someone who knew I am doing chemo asked me if it was a wig yesterday....
I am sorry to hear about everyone's parents. My mom died young (yep, cervical cancer) and my dad is fighting stage 4 now. It's pretty horrible. I had a full myrisk panel, everyone was shocked when it came back negative (my family history is awful). I am assuming there are just undiscovered genetic flaws out there somewhere, which is why I have chosen relatively aggressive surgery and treatment.
I can't keep up with all the individual messages I should be sending, but want to send a warm welcome to our new members - I will be on schedule with you now :-)
Also, because it's on my mind - Irish - I am so happy you have made a decision you are at peace with. It's really HARD when the answer isn't clear cut, esp if you have had such a rough time w chemo. Congratulations.
Also to Slappy - I think it's so amazing you have stayed around and are making all these hats for our sisters!! Thank you!!
Looking forward to brightening my outlook today,
Rain
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Coyote,
Your work is beautiful!!!
Shirley
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Good morning, ladies! Pleased to report that Big D has subsided now more than 24 hours. Still have some rumbling though.
Redheeledwoman, welcome to the thread. This is a great group of encouragers and while no one wants to have to be here, we are all very supportive of each other You are one treatment behind me; every 3 weeks for 6 treatments.
Boxofrockstar, is there any way you could get a port? I have no trouble with needles myself, but after a lifetime of getting stuck, whether donating or testing, my veins could not have tolerated IV chemo. In fact, the surgery nurse blew out a vein when placing the IV for the port installation surgery and had to have a phlebotomist do it. It's uncomfortable at first but I don't even notice mine now.
KiLin, big Snoopy dance for your clean scans!
ChaosRains, most insurance will cover a wig if you have your MO write a rx for hair prosthesis. The boutique I went to is specifically set up for BC patients and does wigs and foobs both, and they filed all the insurance while we waited. I didn't have a rx from my bs for foobs, but they said whenever I am ready for them they will fax her office for rx. Tbh I am enjoying being flat after lugging around 44DDDs for so many years. They were hanging pretty low if you know what I mean.
About icing. My nurse gives me a Popsicle while she pushes the adriamycin, but they have cautioned against icing anything else. Apparently the reason to ice is the same reason not to: icing prevents to chemo from reaching those areas, so the damage is mitigated, but it also means that if there are cancer cells there they won't be killed. The inside of the mouth is a bit different since the chemo sores there are more immediate and the ice only affects the lining of the mouth.
Pinkninja, I was given the option of neoadjuvant as well, but my MO wasn't convinced that there would be any advantage in my particular case, so since I'd already psyched myself for BMX, and it was scheduled the Monday after I saw him for the first time late Friday, I said, cut em off! I'm not sure what exact criteria they use to make the decision.
If I've missed anything, I'll catch up later – seems I spoke too soon about Big D, it's reared its ugly head again.
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LOL it took me so long to write that post (including bathroom break) that there were a bunch more posts in the meantime, including Coyote's artwork which is stunning! Perhaps I will post some of my other work later, you've inspired me. What is the name of the gallery in Santa Fe?
JenKay, you are cute as a redhead! RainDew, rest rest rest. Build your strength back up.
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Hi Ladies,
I am sorry to hear about everyone's parents and loved ones who have passed. On the other hand I am very glad that each of you have a good support structure.
All -- love the new looks; the 'el natural, wigs, short cuts, etc.
Chaos - I'm praying that the SE gets better for you. Love the picture you are rockin' the look.
Jennliza -- Please let me know if the cold caps are working for you. Do we need to start using this for the first chemo or can they start later? I am planning a head shaving party to remove some of the anxiety of loosing my hair that is after I make the decision rather to use a cold cap. It may be a financial decision rather than a will it work decision :-)..Rain - Take care of yourself and glad you are home.
Boxofrockstar - one of the group members on the August 2014 thread is also pregnant (with twins) and will go through Chemo. Her user name is Gatomal. Would be great to drop in on the August thread or PM and exchange info.Coyote - your work is absolutely beautiful such talent!
Mags - thanks for the tip on insurance coverage. I will check with my MO about a prescription
I now have a question for the group.
How many are doing chemo via IV vs. port. The center I go to prefers IV, where I thought having a port was the standard. The onc indicated they would only do a port if veins were hard to find? I posted this question in the August 2014 also but thought I would also post here to get your input. I am not a fan of needles actually hate them. Also, the arm nurses and lab technicians usually migrate to is now off limits for BP and any needles due to my ALND. I am a little confused but want to get the enough information as I really thought a port was the way to go? I am confused and wondering why they are so not wanting to give me a port.
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Coyote those gourds are beautiful! I use to do pyrography (wood burning) before the kiddos started school and I was a stay at home mom... may have to get back in to it now that I'm sitting at home again
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Wow, I missed a bunch! Welcome to all the new ladies, sorry that you are in the same boat but this a great bunch to be with.
I had the neulasta shot in the stomach yesterday and it stung like a bee! I'm getting wary of needles so I'm thankful for my port, even if it is a little irritating. It turned black and blue and now is yellow. Does this happen every time you use the port? My headache comes and goes but mostly I feel tired.
Love the buzz cuts, you ladies are beautiful! The wigs look great too! Wallegator, I am ErPr negative but Her2 positive so when I finish the AC I'll move on to Taxol and Herceptin and then just herceptin.
Mags I was worried about the big D since I tend to go that way anyway but seems my body has decided to do the opposite so I have been drinking lots, eating apricots, and taking colace. Geez!
Hugs to everyone!
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Nthing how gorgeous those gourds are!
Re: needles vs port, I am doing IV and went back and forth about asking for a port. They wouldn't have to stick me every time, but I think having the port in might freak me out a lot, too. When I had my lumpectomy the wire marker they put in first freaked the hell out of me. I couldn't handle seeing it sticking out of my skin. I'm most likely only doing 3 more treatments so I will probably just try to tough it out. Hypnosis is an interesting idea. I wonder if it would work for me.
I did see Gatomal's post and we have already messaged! I actually signed up just to respond to her because it's such a scary time to be diagnosed. Not that there's any time when it's not scary...I will also drop in on the August thread.
ChaosRains, I was thinking the same thing about makeup. I had so much hair that it was like overkill to do much to my face, but the shorter I cut it, the more makeup I use. Once I'm bald and can't have fun with my hair anymore (and all you can see is my face) I'm going to have so much fun with makeup! I will probably make myself look like a clown, but maybe some youtube tutorials will help.
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Blownaway - I checked out the TCH thread a couple weeks ago and looked it over again last night after reading your post. It's been very helpful and having some kind of idea of what SE to expect has helped to lessen my anxiety. What SE have you experienced?
Irish - I liked the Ambry shout out. My boyfriend works for Ambry and they are an amazing company and they have been so supportive since I've been diagnosed. I'm happy to hear all tests were negative.
Coyote - your artwork is beautiful. Love it!
Everyone looks gorgeous whether they are going natural or wearing wigs. I'm definitely going to check out Youtube for makeup tips.
Hope everyone has a wonderful weekend with minimal or no SE. Sending positive vibes and prayers to all!
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I got a port and while I had some discomfort at first, I'm really glad I did. The nurses blew a vein at my MUGA scan and also had a lot of trouble when they put the iv in my hand when I was getting the port placed. I've had no pain when they did accessed the port after using Emla cream.
My mom passed away unexpectedly in May 2014 right after my diagnosis so I know how difficult losing a parent can be at this time.
Maidentiredofwaiting - I got my neulasta yesterday too but I got mine in my arm. Took a Claritin that morning before and today and haven't had any bone pain yet. Just tired too.
Coyote - The gourds are beautiful!
Hugs,
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Wizard50 - Since you asked, I pulled my ongoing list out of my "chemo bag" - these are in order of appearance after my second chemo. The only thing missing from this list that was on the list after my 1st chemo is nausea. I learned from the ladies on the TCH board to ask for Emend to be added to my infusion and that eliminated the nausea - yeah!!
Woozinesss, ringing in the ears & can hear my pulse, red rash under skin that does not itch, taste buds gone, low energy, heartburn, constipation, mouth/tongue feels burned, stabbing pains in head and tendons all over body, thumbs and forefingers starting to go numb at the tips. Also, my labwork before the 2nd chemo showed that my red blood cells, hemoglobin, hematacrit had all dropped below normal range but I have always had a tendency toward anemia.
I know it helps to validate "am I supposed to feel this bad?" but everyone is different and you may have different s/e's than me.
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Blownaway - thank you for responding. I would rather go in knowing all I can and be pleasantly surprised if I have few or minimal side effects. I get major anxiety if I feel nauseas so I already asked and confirmed that I'll get Emend as part of my infusion. I've had issues with anemia as well and have needed blood transfusions and iron infusions in the past. My MO is aware and I'm sure he'll be keeping a close eye on that.
The unknown is the scariest part. My first infusion is next week and I'm dreading it and also anxious to get it over with. Did you feel fine for the first day or two after chemo? It seems like many on TCH start to feel the SE around day 3.
Your input has been incredibly helpful and I'll let you know how I'm feeling next week. Thanks again
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Shirley, your hat came in the mail today and its lovely! Thank you so much!
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Wizard50 - Without the addition of Emend in my first infusion, I woke up the next morning feeling fine but by 9 am the nausea hit and it lasted for 3 days, along with a slight headache. Nausea takes the will to live right out of me, I just cannot handle it. I could not lift my head from the pillow or eat anything other than soda crackers for 3 days. With the addition of Emend in my 2nd infusion, it was a night and day difference. I was actually doing housework the next day. You are right the other s/e's I mentioned kick in after a few days. It never occurs to me to take a pill untill I'm really miserable but most people are better about staying on top of the s/e's. If you feel a headache coming on, don't wait, go ahead and take something allowed by your onco for it because it's probably going to get worse. During the actual infusion (my 1st one took 4.5 hours) you feel just fine, you could even go straight to a restaurant afterwards, if you wanted to. If you have a port, don't forget to use the deadening cream one hour before having it accessed (the needle stuck in) -I truly did not feel it at all.
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Okay, I just worked up a selfie. That's more difficult than one might think! This is the only place this photo will show up and it might get deleted before too long.
Note: I'm not certain if that yellow ball is the actual photo of me...same hairdo. When you look at the photo, be kind....I'm also admitting that I think I am the oldest July lady on this topic... 39 + 30 this month. See how much I trust all of you?
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Yay, KaLin...I hope you can celebrate all weekend. Nothing like good news.
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I'm hoping when my hair grows back it'll have a little curl in so that I won't ever have to get a perm again.
I'm experimenting with popsicle recipes to have some on hand for my next round of chemo. Today I made a mango popsicle with the mango that was in a gift basket I received. Watched a YouTube video first so I'd know how to get the pit out. peeled it and chopped it up with 1/8 cup sugar and 1/2 tsp lemon juice, slushed it up with my new immersion blender and poured it into 4 little paper cups and stuck a stick in each one. Should be nice and frozen for an evening snack tonight.I got my free wig from the American Cancer Society office too, along with 3 free hat/scarves.
phone # is 1-800-850-9445, web address for the catalog is www.tlcdirect.org.
and if you want more than one wig, have Dr write a script for one and insurance will cover one
anyone needing front closure bras, or soft camisoles to wear later during radiation, check out the online store at www.healthcareaccessories.com/index.htm (it's my local hospital's store). Dr can write a script for "post surgical garments" which will give you 2 free bras a year through insurance for the rest of your life.
Coyote: great news about no neulasta this time, didn't know that could even happen. Glad you and your car made it home in the heat and stalled traffic, love your gourd art work
MomtoIrish: I was just starting yoga when I developed the rotator cuff tear, so many positions that I can't do now so haven't gotten back into it, I'll see if I can find a photo on our Segways to post
KiLin: congrats on the CT and bone scan, that's wonderful news
JenKay: the wig looks very nice on you, I think the shorter ones look more natural
Wizard: didn't you have a fill today? Hope it went well
As for the port vs IV question, at first my onc thought I could get by with just my veins since it was only 4 rounds. I was concerned since we wouldn't be able to use my left arm, and after she heard that the ER nurses recently had trouble getting an IV started (took 4 pokes in my hand, it was swollen and black and blue for a month), she changed her tune and said yes, I needed a port. My infusion nurse (and my own professional experience with ports) mentioned I might want to still get my lab draws from my veins if they're able to get in OK, which they have, and to just save my port for the caustic chemo. Doing blood draws through a port increases the chances of the port clotting off. There are anticlotting meds that can be used, but they can't always save it. So I'm just using mine for the chemo infusions, and I'm only going to the infusion lab for my lab draws cuz they're so good at sneaking up on my veins and have gotten in with one poke every time.
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Coyote - beautiful selfie!
Blownaway - I'm like you and can't function if I'm nauseated. That's my biggest concern which I discussed with my MO. I'm all prepared with prescription meds including Emla for my port as well as OTC meds for any possible SE. I was also told my first infusion will be 4-5 hours so I pretty much expect to be there all day. I'm feeling so much better knowing what to possibly expect.
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Here's a video of a Flowbee in action:
https://www.youtube.com/watch?v=jBBSNtAKF8s0 -
Wizard50 - Good luck, with the Emend you'll do just fine.
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My mom died after my mastectomy and before I started chemo...on June 26. People who know me tease me about the all round shit year I am having. I sort of shrug...one day at a time, ya know?
My second infusion is next Thursday, the 7th. I go in the day before to see the oncology nurse practitioner and get blood drawn. As I understand it, chemo destroys your infection fighting white blood cells. Apparently, it takes about three weeks after they're knocked out for your body, specifically your bone marrow, to make new white blood cells. So, if you are doing dose dense chemo, every two weeks, your body would never catch up. The Nuelasta shot basically gooses your bone marrow to hurry up and make more white blood cells. That is why you get bone pain, cause your marrow is working like mad.
Meanwhile, I am still doing amazingly well, the pounding killer headache of last week disappeared after my three days on Decadron were over. I may ask about the consequences of skipping the Decadron. I also think it may have been related to not sleeping the night through. But this week is so much better!
I didn't expect to have a port placed, but the infusion nurse looked at my veins and said she recommended it. Despite the fact that anyone who ever drew blood from me, either a pint or a test tube, has complimented me on my veins. Anyway, I think the port is way easier for the nurses. I got a script for Emla and I felt no discomfort when they accessed it. And, yes, I have a pretty big bruise that turned up about a week after the port was placed. It never occurred to me that the bruise was from the access, I just assumed it was healing from the placement surgery.
I have pictures, but I will do that as a separate post.
~ Rambling Rose
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My wonderful friend, Ann, came up to our small town this morning...an hour's drive for her, so much appreciated. We took a spin class together at my Y and then took a lovely walk around the harbor. And then it was haircut time! Ann was so wonderful to spend the morning with me, and to witness and photograph the haircut.
I am taking the American Cancer Society class called Look Good, Feel Better on Monday. Apparently, they give you some makeup and show you how to most effectively use it and how to tie a scarf, ya-da, ya-da. I had heard good things about the class, but figured I'd get more out of it without my hair. Plus I didn't want them to think I was in it just for the free cosmetics!
So this is my before picture.
And afterwards, with a new blouse I couldn't help buying...in my favorite color.
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Busy Friday for everyone here. I'm trying to keep up with all of us!
Coyote, you're lovely with no hair. There's something so beautiful about a woman's confidence and bravery when she allows the world to see her. Besides, hair distracts from eyes...
I'd really love to know more about your art work. Are you willing to share the website? (or please pm me).
On the port question: it wasn't even offered to me (and I have shy little veins). One complication from the first round was a leak under the skin. I now have a patch of damaged-looking skin...I think it's going to take some time to come around.
I asked the MO about a port and he said if anything, he'd do a picc and by the time they would be able to do it, my second round would be done...so just two more.
Best advice (and it worked for me for round 2)
1. Be VERY hydrated when you go in. (You may want to try hyper hydration which is a teaspoon of salt in a litre of water -- it helps to retain more of the water rather than peeing it all out. Runners use this trick...try a google search). I suppose electrolyte drinks would do the same.
2. Request a warm blanket and a heating pad for your arm as soon as you arrive in the chemo suite. Don't let them rush the iv until you're toasty warm.
3. Take an ativan half an hour before you start...apparently ativan makes me chatty. There was one woman across from me that got the worst of it. As she was leaving, I said "I'll miss you." Her response? "I won't miss you." (She was smiling, though...). Still, the ativan helped and the IV went in on the first go. No problems.
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Coyote, you're gorgeous! You have such a lovely face, no need for hair to distract the eye!
Rose, I love it. I kind of wish I'd left a little length on mine to play with
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Coyote, you are beautiful with or without hair. Thank you for always having my back. You are a few years older than I, I'm only 39 + 24. I had to count that out.
Puffin, I'm with you on the perm thing. The last round of perms I started getting in November was the most I've ever loved my hair. My hairdresser got it just right. Oh well.
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Coyote, I think you look beautiful!
Guess we all kind of feel the same about our bald selfie's and maybe selves too... I haven't shown mine to any of my friends (you are all included here) or family except for hubby who is the only one who sees me without something covering my head. I had thought I was going to have the courage to post mine to facebook after all the compliments I received on here but my courage quickly deserted me!
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Thank you for welcoming me magdalene51I have a nasty red bruise under my skin at the needle injection site. Has anyone else experienced this? When I went for my follow up labs the Nurse asked if I was experiencing any pain or itching. It itches very lightly but no pain. The Nurse asked that I keep an eye on it just to make sure I dont have an infection. Has anyone else experienced this? I decided not to have a port in my chest because I am only receiving four treatments. I thought for sure my veins could hold up.
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Puffin - I had my first fill on Wednesday and I didn't feel a thing! I was sore yesterday but nothing that required any meds. I'm feeling much better today.
Shirley - I got my hat today and I love it! Thank you
I'll post a pic soon.0 -
Hi Ladies - Two days after second round of AC and feel like I got
hit by a truck - so tired! I made it through half a day a work and came
home and finally crashed for a couple of hours until my husband called
asking about dinner :-/So great to see all of you handling your hair loss so well - what great pics! I feel like I missed so much in one day
Raindew - glad to see you're going home. Boxofrockstar - you are a rockstar to deal with chemo and pregnancy!
I
talked to a nurse about icing yesterday while I was waiting for my
Neulasta injection. She didn't seem to have an opinion one way or the
other, seems kind of amused by the whole thing. We got on the topic
because she recognized me from the day before, even without the cold
caps on my head. She made a point to stop by my room on infusion and
comment that "she's never seen them work". Thanks a lot! My husband was
gonna strangle her. I still have hair after 2 treatments and I so hope I
can walk in there in another 12 days and show her my head of hair. I'm
so tired of the negative nellies. Just say good luck and leave it at
that.My nap totally screwed up my med schedule, gotta figure out where i should be. Hope everyone has a restful evening.
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