Starting Chemo in December 2016
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Jezikah, I'm going to get counseling when I have the energy to do so. I'm on depression meds, not working yet. I'm trying to arrange for people to walk with to get exercise and improve my mood. I'm not going to go to the gym, but I can walk in the neighborhood or on the hiker biker trail. I'm taking what they offer me.
I was offered a case manager, but have yet to connect with her. There are cancer groups around, but I have not had the energy to look into it. I've found some people through friends or chance who have been thru bc treatment and I'm going to call them on a regular basis.
I'm reading all the posts by everyone, even if I don't come here everyday. Days I don't come to BC.org are probably the days I'm dealing the best.
Thanks to all for sharing stories and your lives with the rest of us.
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Hi all, Im starting chemo on Dec 16th. I am doing the Penquin cold caps. Today my Dr told me to arrange to get a port...I don't want a port. Has anyone refused it? I have to get through 12 weeks of chemo and then Herceptin for a year. I am having Abraxane and Perjeta and Herceptin. 12 weeks of Abraxane. I am petrified and any and all info is appreciated.
Can others tell me about the port experience
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Hazel15, I asked my Dr. if I needed a port. He looked at my arms and said my veins were good so it should not be necessary. He told me to drink lots of water before each infusion. I will have 24 weeks of chemo. The thought of IV drugs in my arm for that long seemed more painful than a port. I guess we will see how it goes. I start on December 15.
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I'm sorry Jezikah
. Very insensitive of your SIL. I find most people have good intentions but can be extremely dense. If I had a dollar for every stupid comment I have heard I would be in a better situation financially at least! Your situation has double the pain. I think counselling is a good option to try and great for thinking ahead by saving your eggs! Having a second baby is still a real dream for you. Glad to see you Hanging in. I also check every day but don't always have the time to post. Hope we can do a lot of sharing through the chemo treatments as it is so daunting. I read your earlier detailed post and it wasn't very helpful. Take care
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They want me to do a port whuch is another surgical procedure right? I dont want another procedure. Still recovering from my BMX. Still have ny drains in, only 10 days Post op. Sick of all these drs appointments and tests!
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ILSunrise - I'm not sure if everyone can have the patch or not. I know it was mentioned that some insurance companies do not cover it. I believe that the majority of people do receive Neulsta in some form. Some people are not candidates for one reason or another. I was happy to not have to go back the following day for the shot, but if I had to the drive is only about 20 minutes. I would see if they can do your chemo education before your first day of treatment. There is a lot of good information and things you may want to get ahead of time. Please keep us postedon how you are doing. Sorry that we all have to take this crazy ride together.
Melinda0628 - I am so sorry you are dealing with all of this. I had a 'losing it' moment when they told me last week I would need radiation when I wasn't counting on that at all. Some days are better then others. Just know that it is ok to lose it from time to time... you are entitled and you don't have to keep it together 24/7. Your chemo dates will be close to mine, I start on the 28th. Keep us posted on how you are.
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Melinda0628- The port is another procedure. They are doing mine as outpatient in a twilight sedation. The port will save your veins and a lot of needle sticks for chemo and blood draws. Some chemo has to be administered through a port It is a lot to take in but your BMX was your biggest step. I bet you will find the port placement so much easier. Hang in there!
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Guys, I made it! Round one of chemo done! I was so nervous about so many things-maybe my port won't work, what if I have an immediate allergic reaction? Don't get me wrong, I'm afraid of what will happen once the aloxi and other premeds wear off, but right now, I'm so glad to have survived today, and will continue to try to take this one day at a time. Or one minute at a time if/when the going gets rough. My onc isn't willing to give me a neulasta shot or patch at this time because my cell count is already elevated. Why you may ask? Not for certain, but an incidental finding on my pretreatment scans and blood work revealed that I also tested positive for antibodies associated with systemic lupus or another connective tissue disease. So I get to add a rheumatologist to my doctor dream team. I'm going to be honest, sometimes it's just a bit too much for me. Three months ago I felt ok. Then I found my lump. My first mammogram at 35 and maybe my last. At leastfor my left breast. Again, one day at a time.
I'm so glad we can share our experiences. I'm especially curious about those that are cold capping and how cool it is to be able to save the thing people always associate with chemo. It's like giving cancer the middle finger! I've already shaved my head and I actually kind of like it. Maybe I should ice my eyebrows? Now losing THEM would be tough on me LOL
One last thing I wanted to share for today: for those who are going to start chemo soon, don't be afraid, because you are not alone. We're all going into that infusion room with you, even if we've never met. I think we're going to be a strong group here, at all different places in the journey. For example, many of you have already had surgery. I'm doing neoadjuvant chemo, so I already have so many questions for you all in regards to surgical options and things like that once my time for surgery comes near. I know I won't be alone and that there are many who will have a wealth of advice and info to help me. Thank you in advance!
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Hi IL Sunrise. Yes, it has been a difficult decision to move forward with chemo as you understand. Thanks for the link to the cold capping discussion. I'm certain it will come in handy! Take care and good luck
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Its all happening so fast. Surgery scared me, but I made it through. Guess I have to get a port put in, so that's the next step. I am hoping these drains will be coming out soon, they are so annoying.
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Hanging_in_there - Love you humor! How does the DH like being called your "Uber Driver"? I've heard from other BC Community discussion groups that exercising even a little does help with the fatigue. So, I hope you find some friends to walk around your neighborhood with you even if it's just for 5 or 10 minutes. It should really help with your mood. Anything you can do to help you feel more normal should also help ease some of this stress/tension/depression.
OhHeyItsDeeDee - Congratulations on completing round one! I agree it's going to be interesting to see how the ladies trying cold capping do with their hair. Knowing myself, I just wouldn't be able to tolerate being that cold for so long. Funny thing I've heard from a few people about their eyebrows during chemo - some of them didn't lose their eyebrows until after all their rounds of chemo were done. Anyway, I'm laughing at the visual of you "icing" your eyebrows! Once again, humor is a great stress reliever for all of us!
Jezikah - I don't think counseling is ever a bad idea. The diagnosis and treatment is enough to put anyone over the edge. Then when you add in your own plans for a family and the insensitive SIL announcement at Thanksgiving, well that certainly would be unbearable. So, anything you can do for yourself right now to help you fell better physically or emotionally you should do it which certainly includes some counseling. You were very smart though and saved your eggs......so when you do get all this treatment behind you, expanding your family is still in the cards for you!
Hazel15 - I'm not having a port installed, but my MO didn't really think it was necessary for 4 cycles of chemo. I did have the nurse look at my veins to see if she thought I'd do OK without the port. If you are having more rounds or have small veins that are not easily accessible it might be a good idea to get the port. I've also heard that some chemo drugs may be harsher than others and a port might be beneficial in those cases too. I'm not positive about my last comment, so perhaps you could ask your MO that question or even check in the November chemo group to see if they know for sure if that is the case. Good luck making your decision on the port. I start my chemo on the 15th and feel like I have my countdown clock going....
Not sure if you want to make your diagnosis and treatment public, but if you do just fill out your profile and make it public via SETTINGS. As we continue on our journey together, its' hard to remember what everyone posts. Just a thougt.
M0221 - Thanks for the information about Neulasta. I almost had them reschedule my chemo training...but then it was just another appointment where I'd have to schedule around work. So, in the end I just kept it the way it's set up. This is my busiest time at work and with the holidays, the month is short anyway.
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OhHeyItsDeeDee - Congrats on the first round! I'm glad to hear it went well, my first round is tomorrow and I have been a nervous wreck this week. Way more nervous than I was for surgery! I also agree I'm more upset about the idea of losing my eyebrows than my hair! I'm planning to buzz it this weekend...
ILSunrise - thanks for the words of encouragement. I'm planning on calling the counseling service today to set up an appointment. It is a lot to handle without someone to talk to about it (I mean my husband, sister, and friends have been great support, but talking to a professional would be helpful). My co-worker was upset this morning about a $.63 late charge on her water bill and called the water company to complain about it and when she got off the phone, she's like "ugh! Life sucks so much!" She did see me standing there and said "yeah, but you already know that." I just said, "I try not to think about it", took a deep breath and walked away before I started freaking out (see "nervous wreck about tomorrow" above...)
Melinda0628 - I had my port put in last week and it wasn't too bad. But I'm doing 6 rounds plus the full year of Herceptin and I have tiny veins that like to collapse under stress, so no port wasn't really an option for me. I hated the drains too and got them out at 11 days post-op so hopefully you'll get yours out soon!
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I join OhHeyItsDeeDee in having just completed day one of chemo yesterday, pretty much the same regimen, although I am using Dignicap. It was 9 hours at the infusion center, mostly extra time for cap fitting, adjusting and the extra cooling after infusion and slow first time infusions to watch for reactions (none). So next time should go faster. I was really tired by the time it was over, came home, ate dinner, fell asleep in a chair watching Rachel Maddow and gave it up. The good thing is I DID sleep for at least a few hours last night.
Physically, today I just feel sort of odd, off, if you will. Dry, fuzzy mouth and I am addressing that. No GI issues, but I consume a lot of probiotic foods already, like miso, sauerkraut, kombucha, kefir, etc. Adding more of that kind of thing is no problem for me. I'm going to try a three mile walk here in a few minutes. Tomorrow, after this damn Neulasta bomb goes off-a short run. I've gained four lbs from the steroids. AAGH!!
Editing to add that I was petrified of having the port. Honestly, its not that big of a deal. I'm glad I got it. I'm scheduled for six major chemo infusions then Herceptin for a year and I can't imagine them digging around for a vein each time. (I have small ones.) Get the port.
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Hi guys. Well I have some bad and scary news. They discovered I have a blood clot about 3 inches above my port at the base of my neck. I have a swelling and weakness in my left arm which is the same side as the port. They put me on blood thinners, Warfarin, and Enoxaparin which I have to infect myself with once a day for seven days. So because they found the blood clot they we unable to give me my 1st chemo but I will be having it next Monday. The chemo goes in the other direction than the blood clot thank goodness or they wouldn't be able to give it to me. My doctor told me if this blood clot were to break loose it will go straight to my brain.
OhHeyItsDeeDee- Corgrats on getting through your first round!
Jezikah - It's certainly normal for us to be anxious about all we are going through but counseling can help. For me personally, I have friends that I talk with and I have a very strong close relationship with Jesus Christ. So those two help me "keep my chin up" as they say. Especially since I just lost hubby 8 months ago and have no children, and no family close to me.
bareclaws - Congrats on completing your first chemo and thanksfor giving us the report on how it went and you are feeling.
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PamLamb, I will hold you in my prayers. So sorry for more complications. Although I have not been a big prayer, I wake up in the middle of the night (can't sleep) and think that is a fine time to pray.
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Hazel15, I can tell you about a port. I had my installed on Nov 21, and the next day got on a plane to visit MIL in FL for Thanksgiving. Just took over the counter meds. But I do require a lot of pillows to sleep with. I hug one as I sleep on my side, protects my port.
I never considered refusing the port, but I had a lot of intravenous dyes pumped into my body for different tests leading up to chemo and I found the thing on my hand much worse than having the port. Everytime they wanted to put a new contrast in, new line on the back of my hand. So my port is still a little tender, but for me it makes it much easier to take the chemo.
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Hanging in...thanks for telling me about the port. Im going to arrange it tomorrow. Im hoping it wont show. Im a small woman and thin so I guess Im hoping for a miracle
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Thinking ofyou Pamlamb. The last thing you need is more complication or delays! So sorry. We will be starting chemo on the same day.
Congrats KN870! 2 rounds done already
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Summer 2016 - we are getting the same cocktail. I got my port today and start AC tomorrow. I feel pretty good after getting the port today, just a little muscle soreness tonight, better than I expected! Hoping all goes as well tomorrow.
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Im nervous about getting this port in. I really wasnt expecting yet another procedure so quickly. Drains are still in, and I guess its just getting to me.
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Had my port placed yesterday. Only sore so far. Chemo today. Anxiety is going up. I plan to go to work after my infusion so I am hoping for no immediate effects. Trying to keep everything as normal as possible.
Irishmom looks like we are on the same schedule.
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Hi all🙂
I've been a lurker here for about four months and felt quite selfish to have gained the help I have coming here and not posting so......
Not sure yet how to post all the Dx info yet but I was diagnosed the day after election. Have a tumor over 3cm that had grown rapidly and had been in my left breast since spring of last year. I ASSUMED it was a fibroadenoma as I have two in the right breast that were biopsied two years ago. After much pressure from my paternal aunt who has faced BC twice I got tested for the gene in March of this year---like her I am BRCA1 positive.
I had the MRI in April which did not "show" anything, not the tumor that was very visible to me, no activity in lymph but due to its growing and my not understanding how it couldn't have been picked up via MRI I had another one and mammogram in Oct. Fast forward I have cancer IDC triple negative, stage three, one lymph node involvement they see so far.
Today I started chemo! It went without incident. A bit light headed when I got home, very sleepy so I napped and 11 more weeks hopefully of Taxil then the A/C combo for four sessions followed in the future by DMX and ovary removal.
Whew that's a lot for now! Thank you ladies for the participation and encouragement youve given in these boards. You ROCK!!
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SCGirl50 - No doubt your anxiety was so high with starting chemo. I'm amazed you plan to work after your infusion. I do agree with trying to keep life as normal as possible. However, be sure to listen to your body and if you need to rest, disconnect from the office/work. My plan to hopefully ease the anxiety I'm know I'm going to have next week when I start chemo, is to have a massage the evening before the infusion. Congrats on checking one infusion off the list!
Irishmom3 - We'll be thinking of you during your first infusion and sending hugs.
Covered69 - Wow that is overwhelming news especially the part about the MRI not showing anything. Glad you went back for more tests and listened to your aunt so you could get genetic testing. That certainly can help you make much better treatment decisions. We're here for you and don't worry about the lurking. Many of of did that before we first posted anything. I was diagnosed in July and lurked around various communities on this website before posted anything in October.
If you want to make your diagnosis and treatment public, fill out your profile and make it public via SETTINGS.
KB870 - way to go, two rounds done!
Pamlamb - Oh my, that news certainly was terrifying. Thank god the blood clot was discovered so the doctors could treat it. We're thinking of you as you have to face just one more twist in the winding road....
bareclaws - congrats to you too on checking off the first round of chemo. Sounds like you're a very healthy person. Guess I should google probiotic foods. I don't even know what kombucha and kefir are - ha ha. Did you feel up to the three mile walk? I've heard that exercise can really help minimize some of the side effects. Yikes - when did you start the steroids? Certainly you were bummed with weight gain so quickly.
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Hazel15,
I had a port 8 years ago; mainly due to the fact that my veins are small and they roll. Chemo can be a bummer on your veins. I had no problem with it. They wanted me to keep it in for 2 years but had to take it out after a year.
God saw how well I did 8 years ago with chemo, etc. that I get to do it again. My port is scheduled for 12/16; first chemo 12/19. I am so lucky!
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Hi
I started chemotherapy 2 days ago. My first treatment went without a hitch,though I was unfortunately landed with a very attitudey nurse with zilch empathy so will try to avoid having her next time. Today being day 3 I've woken feeling very drained so the plan is sleep and relaxing in the lazyboy the lovely cancer society lady just dropped off.
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Hi I'm HER2+ I have just started Herceptin 2 days ago following a MUGA scan last week. Apparently I'll be having one every 3mth during my 12mth treatment. I'm only 44 and otherwise healthy so yes I would definitely ask. Good luck with your treatment. One day at a time
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I had my first treatment of AC today. My port didn't want to corporate at first, but my rockstar nurse got things flowing after repositioning me. I came home, went for a walk and just feel jittery from the steroid. I have an auto-injector of Neulasta on so one less doctor visit this week! Hoping the next few days go just as well. Fingers crossed! Hoping all of us stay healthy during this journey
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looks like everyone is underway with ports and first treatments. I am happy all first treatments Have been going well.
Irishmom - glad you had a scuessf day. Get a good nights sleep. sweet dreams
Iam a scheduled to start chemo next Friday 12/16. I am nervous by optimistic. No port for me. I hope I can handle it. After pathogy came back turns out my tumor is grade is 3 (not two) so more aggressively than they thought. I'm concerned about what that means.
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I think the walk was very important, mentally as much as physically. About 24 hours after the infusion I felt pretty bad but one Compazine and a Claritin D and ginger tea straightened me out. I woke up at 3AM feeling good, like the drugs were wearing off. Got up and ran (slowly) four miles this morning. I wanted to do five, but decided not to push it. It wasn't a great run, but I've had worse. Lost two lbs of water weight overnight and hope the rest is soon gone.
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Hi Scared,
It means your cancer cells are undifferentiated or have abnormal cell shapes and have the tendency to spread quickly to other organs if no immediate treatment is done. Did you have any ct or bone scans? They can see thru these scans if your cancer has metastasized. We have pretty much the same tumor size, mine is actually 2.5 cm and have 1 positive node out of 14 nodes removed, that's why my stage is IlB. Another question, what are the percentages of your er+ and pr+? They indicate whether you can have hormone treatment or not. Low positive er/pr can mean you are actually triple negative. My er+ is only 5% and my pr+ is only 3%, with my Her2 being negative, hence i am considered triple negative. From what i have personally read, Triple negatives are harder to treat, has only chemotherapy as the only treatment available, and has a higher chance of recurrence. Some say however, that Triple negatives respond better to chemotherapy. Nobody knows for sure. Each is unique.
I am not scaring you, just giving info that i have. I want you to get thru this, like all the other ladies here. You can do this.
Take care and keep healthy,
Gina
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