Starting chemo February 2018
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We are just chiming in to welcome you all here, and let you know we are routing for you!
Here are a few links that may have helpful information:
Go to the bottom of this page, and get the PDF called:
Read and download Community Member tips for chemotherapy treatment (PDF).
Ginger May Help Ease Nausea Immediately After Chemotherapy
Having More Muscle Mass May Mean Milder Chemotherapy Side Effects
Hang in there, and we are here for you!
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Day 4 and still holding up OK, though the fatigue is hitting me pretty hard right now. Bit of nausea last night, but nothing the meds couldn't take care of, and I'm pretty useless today, having a very lazy day of catching up on my Olympic watching.
Seriously hating the daily Grastofil shots, though, they suck badly, I hate doing it, every bit of it is unpleasant, ugh. Makes me wish I was wealthy so I could have the Neulasta instead, but my insurance denied the claim and even with assistance, the cost is prohibitive for me, so I'm stuck giving myself painful daily jabs for the duration, ugh.
The mental part of this whole thing is draining me now, I'm only 4 days into an 8-round treatment plan and I'm already completely over it. The finish line seems so far away, I don't know how I'm going to keep it all together for the coming weeks and months.
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Anxiety Girl, chin up, we can do this.
I just did my grastofil 30 min ago
I was just saying I would have hated the automatic injectors, wondering when the thing would go off would bug me. I'd honestly rather do it myself. Are you getting any bone pain yet?
Sometime near end of May we'll be done chemo! I actually don't have a final plan because my MO was mumbling something about changing the Taxol at the end. Not sure if she's thinking switching to weeklies for that or what....
The weather is sure a sudden surprise. I had a ton of snow this morning.0 -
I'd much prefer the Neulasta, at least it's only once a round rather than daily for a week, I've only done it twice and I dread it already. It seems like such an unnecessary thing, when the rest of this is so unpleasant already, why not be allowed one easy thing in all of this??
No bone pain yet, though I'm sure it's coming. Mostly, I'm just tired all the time now. May seems so far away, and knowing this is all going to get worse as the rounds go by is weighing heavily on my mind today. Just a down day, I guess, especially with Monday right around the corner (tomorrow is Sunday and I always have awful Sunday blahs, I'm very unhappy in my job and now it's worse, knowing that I'm trapped in it - was planning a big career change this year, but that's out now, and I can't afford to take time off to cope because the meds are too expensive without insurance).
If only that gorgeous sunshine would come back for a bit. It was cold and grey here at the beach this morning, then it brightened up, but now it's gloomy again, brr.
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oh bummer AnxietyGirl
Can you look into taking long term disability at all? have you looked at https://www.inspirehealth.ca/ They're kind of far for me to drive to but might work for you? Classes and support etc and all free.
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I chatted with HR (they were very pushy about me leaving work ASAP), and with a counselor at the Cancer Agency (who was equally pushy about me not working), and the only option for time off is medical unemployment (with no insurance, which the doctor was pushy about me keeping because I can't afford the meds without it). I'm a contract worker with no paid leave (sick, vacation or otherwise) and the insurance I have depends on me staying on full-time (though I can reduce my hours a bit). Medical EI, which would be 55% of my income, wouldn't even cover the prescriptions I need now, much less rent and bills and other essentials (like groceries) on top of that, so I'm stuck where I am if I want to get through this. It's just all a lot for my exhausted brain right now, I'm not in a good headspace today at all.
Several ladies here have suggested support groups, but the thought of more time commitments and dealing with more strangers in a cancer-related environment just makes me more nauseous than I already am. I'm a pretty diehard introvert with minimal free time that I'm very protective about, so I'm really not keen on adding more stress to my life with extra cancer activities, none of that would be at all normal for me, and I just want my life to be as normal as I can keep it now.
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Day two mainly tired but really don't know if it is more from the surgery yesterday and pain medication or the chemo. will have a better idea next time of course. Neulasta pod did it's thing.
Anxietygirl, I am sorry you are having such a bad day. Having to worry about the cost of all this seems to really have you stressed I know that feeling for sure. Fear of losing your insurance is so awful and one we had to deal with when My husband first became ill. Stinks so much when the cost for someone's insurance will cost more than their income if a job is gone. Does Canada having something like a cancer society like the American Cancer Society that you could get in contact with? You can and will make it remember you need to spend at least 15 minutes a day doing something you love something that let's you spoil your self. I know what one of your spoil your self things is and as it is one of mine I also know it can help with anxiety and stress. Don't let Sunday be a blah day make it your spoil my self day. Get lost in your spoiling your self for a few hours tomorrow for that time don't think about finances hard I know believe me but I also know how easy it is to get lost in the process of what we enjoy as a pass time. LOL now anyone who is reading this is wondering what the heck we both do that can help in this way. Hummmm perhaps that mystery will make them forget things for a few minute. Any way check sent you some what I hope will be some inspriration in private message. Take care of your self tomorrow and for a couple of hours tomorrow get into your safe space.
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Hey all,
Today was much better than yesterday. Actually the best I’ve felt since my last treatment. Just in time to get another one Thursday lol. Cupcake, how weird that the ginger tea made your tummy hurt too! I thought it would help but good lord I don’t think I’ll ever be able to drink it again!
Thanks for suggestions about Pepcid. On Thursday I’m going to ask my nurse and see if I can do that or something like it. Even though I felt much better today I still had that pain every time I ate. It was like my chest was having a spasm every time I tried to chew.
Went to Earth Fare today to get some groceries as I’m trying to transition to a plant based diet. I don’t expect miracles from it but I know it can’t hurt. I love to be healthy but I’ve always struggled with my weight. Being overweight is one of the biggest recurrence factors so this has certainly given me more motivation than anything else ever has or could. I’ve lost over 8 pounds in the past 6 weeks so that a good thing at least.
To all the other ladies with little kids, don’t be afraid to let people help. It’s hard for me to accept help but I’ve been making myself do it. My husband is a godsend as well.
Schools are definitely full of germs galore right now. It’s one of the main reasons I took a leave of absence. As much as I love my sweet students many of them are just too young to understand keeping a safe distance and I couldn’t risk my compromised immune system. Especially in cold and flu season. As for my own two, I’m just praying they don’t bring anything home. I remind them daily to stay as clean as possible at school, and we’ve conditioned them to kick their shoes off and wash their hands as soon as they walk in the door. I hope it's enough. I can’t imagine getting sick and having to delay a treatment and drag all this out any longer than it already has to be.
My best friend turned 40 today and we went out to dinner with a bunch of friends. It was so nice to do something normal and forget about everything else for awhile. Hope you ladies are getting to do some fun things when you can as well. Our mental health is important in all this too!
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Melanie, I second what Moth is saying. You shouldn't have to put up with too much from SE standpoint. Your MO or nurse should be available to prescribe you something to make you more comfortable. My MO emailed me on the Saturday of my Neulasta shot, which was day after my first AC, to see how I was doing. You should be able to ask for help.
AKO428 - you're on the same chemo regimen as I am - 4AC+4T every other week. Welcome to the group!
AnxietyGirl - don't look at the whole picture of 4 months, 8 treatments etc etc. Just focus on the next one and all will be ok! Three foot world! Only what you can control now.
Coleen, glad you guys went out for a nice dinner. Still waiting for my significant other to take me out for dinner for Valentine's !
Hugs.
You all are my warriors!
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hello Anxiety Girl,
So sad to read about the difficulties you are facing now. I thought that Canada had a good healtj care system comparable to the one in Europe in which you are covered even though you don't have a job. Don't you a a system for people who are not working? It seems that health care coverage sucks anywhere in North America! I am confident that you will manage im the future. Just take all the pills that you have to in order to minimize the SE. Hang in there and chat with us as often as necessary. I have also faced difficulties before learning I had cancer. My husband wants to leave me, I am also a contractor but I work part time and no paid leave days like you. When I learned that I had cancer, my first thought was that this was a gift from the sky, that by dying all my sadness and problems would disappear. I scared my MO with that train of thoughts... For now I am accepting to be treated but if it is too hard on me, I will just quit fighting. All of that to tell you that we are all full of resources and that we can beat the monster and manage our usual busy life. I sent you a lot of positive and warm thoughts and hope that yoir new routine will allow yoi to maintain your full time job.
Colleen I am glad to hear that you feel better and that you enjoyed your time with friends. This is also my wish to not think about cancer for one day. Unfortunately it is not happening!
As for me, 2 days after my Groshong catheter and I am starting to regret my decision to refuse the port. The adhesive dressing is killing me slowly. The pain of my skin sucked in the glue is constant. To think about it, I prefer 10 seconds of needle pain than the dressing pulling on my skin all day and night long. Plus, i can barely take a shower. I am tired of aching above my breast. To top it all, my daughter is sick, sore throat and runny nose. I am coughing, this is not good! I hope it will not get worse.
This is the first time in my life that I am participating in a forum and I found it addictive...
Have a nice Sunday
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Canada's system is pretty good but I understand sometimes people in transition from employment to not employed slip through cracks.
Anxiety Girl, I was told by the compassionate access people from both Neulasta and Apotex (grastofil manufacturer) that they would pay for all of the costs even if there was no insurance (I have 80%) I think they're getting a grant from the fed gov't to cover all that. For the other drugs (zofran etc) if you lose income, pharmacare kicks in within a month. There's also some private assistance avail for medical costs. We were told during one of the info sessions that if anyone needed help to contact the social worker and they would get on it. Sounds like you got really negative info from them That's disappointing. 0 -
Colleen so happy for getting a good day! I have also been meaning to ask you if you think the cottage cheese helped with your mouth sores and how that SE was? Hoping it helped or if it did not how is your mouth doing?
Hope we hear form Debmisto and Worriedme soon they where both not feeling well.
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Hi ladies! I haven’t checked here in a few days. Days 1 and 2 post first infusion were ok, I got a little nauseous but was able to control with anti nausea med. I was a little tired, but as long as I napped I was ok. Days 3 and 4 post infusion were very difficult - extremely tired and nauseous even with Anti nausea med. I was kind of on auto pilot just doing Bare minimum. I was feeling a little on the depressed side. Thinking that I’m not sure how im going to get through 7 more episodes of this. But today I finally feel like myself again. Even my mood is way more positive. Like I got this! It sucks going through the SEs but it’s doable. My future health depends on it, so let’s put on my big girl pants and get through it.
My skin around my port did get bruised and a little swollen. I didn’t notice it much at first (I think I was too nervous about the whole thing). But now I notice it. Did this happen to any of you? Is there something I should be doing to the port area after infusion? I’m going to reach out to the MO but wanted to check with you all too.
Hope you are all doing ok. Hope those who already had their first infusion are getting through the first round of SEs ok. Sending strength and hugs to you all!
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Hi Pbello! Glad you're back & feeling better!
Isn't it interesting how we're all different. Day 1 was my worst and it's been better each hour since for me.I wonder if this changes with each cycle or do we stay the same? If it's the same, I'd just plan to knock myself out for the rest of Day 1 and get up only to drink and pee....
Can't help you with port as I don't have one.0 -
Cupcake, I hope you get some relief soon.I'm also a ginger tea drinker. I wonder what makes it hurt with chemo.
AKO, you are so young to have to deal with all of this. I'm sorry that this is your reality right now. I found some ChemoBeanies on Amazon that are kind of cute. Might keep your head warm when you are not in the wig mood. I'm going to order one when I get my treatment start date.
Turns out I just saw the last few posts and there are many above. Sending healing thoughts to all of you
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Pbello my nurse practioner told me if my port was uncomfortable in any way after an infusion that we could use ice packs on it much like after surgery to help with bruising and swelling. As I had to have my port replaced I am still using ice packs for 10 to 15 minutes every two hours. It does help. This new port has been so much easier to deal with. Almost no pain compared to the other one. I was so dreading starting the whole process over again but as replacing the other one seems to have taken care of a ton of pain issues it was worth it.
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AMBurt my mouth has been ok! Every other day or so I get what feels like the beginnings of a sore, but the cottage cheese did seem to help plus I am brushing a lot and rinsing with a mouth sore preventative wash, and my dentist gave me a prescription fluoride paste I’m also using. It seems like my mouth really wants to develop sores but all this proactive work is really helping stave them off. Thanks for checking!
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moth - it's definitely interesting how the same drug can have such different effect on each one of us. I just hope it doesn't get worse every time I go in for a new infusion. My SEs are manageable now.
amburt - I am so happy that your new port is much better! Sorry you had to deal with so much extra pain when you are already going through so much. Thanks for the tip of using ice. I'm going to start right now. Hopefully it will help with the swelling.
Anxiety girl - hope you’re feeling better. It’s hard to keep positive yet it is very important.
Deb - hope you’re feeling better from the diarrhea. It can dehydrate you.
Colleen - hope the nausea stopped. I have had my share of nausea and it’s no fun. Last nigh, I finally felt good and went a little overboard. So be careful. I had a nice steak dinner and then decided to indulge in some ice cream. Bad idea! Had the worst heartburn I have ever had. Took some Pepcid Ac and sat on my recliner chair to help with the reflux until I finally fell asleep.
aK, meldown, downdoggie and the other new ones - welcome to the group nobody really wants to be in. I have found so much support and help from these great ladies! I hope you do too.
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hi guys
Its my 10th day .. im having doc appointment tomorrow for my blood count test.. hope all is fine .. i just noticed my tongue turning black which is weird .. ill check with doc tomorrow..
Debs & worriedme hope you guys are doing fine.. Others Those who are dealing with SE hope ur SE gets better day by day.. stay strong and keep fighting..never let the SE affect your appetite.
This community is like a family now im so addicted to the group .. love you all
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Is it normal to feel shaky and weak on Day 4?
Is this the dreaded post steroid crash? I had my last dose of steroids yesterday at dinner time.....
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moth ,
I had fac .. indeed i was really weak on my day 4 .. until day 6 i was kinda like so dependant.. i just sat on couch all day long..yes it can be the sudden steroid crash.. but if you feel it completely out of control u must check with your doc ..why to suffer.. takecare honey :
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Thanks Aanoliver - I'm not terribly bad, just more weak than yesterday. I will eat & drink more and see if that helps it. We had a gorgeous snowfall overnight & it's now a bluebird day so I'm going to go walk the dog in the snow - but I'll take dh with me just in case I get woozy.
I just read about your tongue turning black - eeek? I hope that's just a weird cosmetic side effect!0 -
This has been a wild roller coaster ride. I found a lump and had a mammogram the day of the solar eclipse on 8/21/17. It was a powerful moment when the patients held hands and prayed together. I had a biopsy on 8/31 then and MRI on 10/4. Because of Columbus Day I didn't get the diagnosis until the day after. Then the unthinkable happened, Hurricane Irma came to my house.I lost my car a 1999 model with no comprehensive insurance & lost everything in the downstairs of my house. 8 days of no power, cable or cell service and dealing with my BC and flood damage. I was terrified. It was so hot I had to sleep outside. The community all helped each other the best we could with no resources. When things started to get better I had a mastectomy on 11/13 and they found that 2 lymph nodes were involved. I had a lot of pain in my arm because they removed 14 nodes. Then where the drain tubes were got infected which delayed further treatment. To this day I won't look in the mirror and my motto is "don't look down". Because I am single this entire process has been extremely difficult. I will get my port on Tuesday, CAT scan on Friday & chemo on Monday 2/26. I get 4 treatments of Cytoxan every 2 weeks then 4 treatments of Paclitaxel then 25 radiation treatments. This forum has been very helpful in keeping my sanity.This is a club I never wanted to join, but I am thankful for every day that I am here to fight. Prayers are up for each and every one of you.
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moth - I had infusion on Monday, then Thursday and Friday (day 3 & 4? Am I counting it right? ) were the worst. I felt totally out of energy I would spend an hour up and about and then crash have to take a nap. I think it had to do with not having the steroids, but maybe that’s just how long it takes for your body to give out. Not sure. But you might be feeling this now. I didn’t get shaky but felt like I was not really in my body, like I was on autopilot just to get by. For me, naps were key. I took one mid morning, one after lunch, and one late afternoon. If the shakes persist, I also suggest calling your doctor, just to make sure. Also, make sure to drink lots of water and eat when you can. I saw the nutritionist at the oncologist center and she said she wants me walking 30 min a day and eating 5-6 small but meaningfull meals instead of 3 big ones. She said that helps with nausea and with fatigue. Also, eat lots of protein, iron, and multigrain. Over cook everything and if you want raw fruits & veggies, soak them in apple cider vinegar before consuming
Let us know how you feel. Hope it gets better after your walk.
Island Jane - I’m sorry you are going through so much lately. I live in Miami and was here for the hurricane, but the level of destruction was nothing compared to the keys. I’m assuming you live on one of the keys. Then to deal with BC and all this while still recovering from the hurricane. That must have been very difficult. It seems you have a good complete plan for the BC. I hope you find comfort and strength, as I have, with the wonderful ladies in this forum.
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I feel better after the walk. Just weak and tired but the fresh air did me good too I think. I think a nap is definitely in my future! Thx for the eating tips; I normally eat lots of mini meals so I guess I'll just keep trying to do that. Nothing tastes really great but nothing tastes bad either....I just keep munching stuff. I haven't had any nausea so that's good. I just feel like all my oooooomph is gone.
I was told chemo is Day 1 so if your infusion is Monday, then Thurs & Fri were your Day 4 & 5.0 -
Moth- this bit of info is helpful. I was wondering what day I was on. Sounds like day 3. So, another hard day tomorrow and then maybe feeling better for a week and a half?
My PET scan is tomorrow and I'm having a lot of anxiety. 3A gives me anxiety. I was told 2B or 3A?? in my initial meeting with my oncologist, perhaps my CAT scan bumped me up. It changes my % for fighting this disease and I worry it is already too late.
I'm sorry to be so negative, I am on anxiety meds, but need to wait another hour for my Ativan. Leaving behind my beautiful children is just so painful to try to comprehend. And I just read a story about a woman here having a clear PET scan with stage 3, then mets diagnosed a month later. Nothing is certain.
Is anyone else talking with their real life friends about any of this? I still haven't told one of my best friends and have avoided talking to my other 2. My husband has been wonderful. He is very accepting and not trying to sugar coat this diagnosis, but he is also able to keep an upbeat mood. I'm very lucky to have him. My mom is convinced I'm going to be fine and wants me to agree with her. But she's my mom, of course she wants this. I'm sad she has to be in the middle of this too.
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Ooooof, I crashed hard for a 2h nap and am just coming back awake.
Magnolia mom - I'm sorry you're feeling upset & need to wait more for your meds. Hang in there.
I told everybody, right away. I told my neighbours, friends IRL, friends in my online communities, strangers on twitter LOL. I discovered I'm a super sharer
I've not regretted telling people at all. I also started a blog called Never Tell Me the Odds - which I guess gives you a hint of what I think about numbers. Screw the numbers. The numbers should guide our medical team's decisions and recommendations they make for us. We're not numbers. I pay them as little attention as I possibly can. Your dx staging & your # are not your destiny right now. They're just the slot the medical team needs to put you in to determine treatment...
Have you tried doing meditation at all Magnolia-mom? If not, maybe try just one with Tara Brach. She has lots of them online, for free or by donation, various lengths. You can get the podcasts on your phone or just stream from the website. https://www.tarabrach.com/guided-meditations/hugs
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I also told everyone right away (friends, family, colleagues). It was hard actually telling each person but I was so glad I did because I got a lot of support and feel like there are different people I can go to depending on my mood. My husband is great but sometimes it’s nice to talk to other people about it. And, even with great support, I also recently started talking to a therapist at the cancer center. Sometimes it’s hard for me to go to my darkest place with anyone else or to just cry to someone else. Sometimes my mind goes there and it’s hard to stop it and there are a lot ofother times when I’m very positive. I just try not to be too hard on myself and be okay with whichever it is.
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i dint tell anyone.. except my family which includes husband,daughter,son in law,son and his wife.. depends on the surrounding you are with .. i dont feel pretty much comfortable with the sympathy and empathy which would be more hard for me to take on than the chemo im doing right now.. anyways my family is so supportive.. u need to tell to somebody to share every detail and keep ur mind free than stress alone..
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I hesitated telling anyone until chemo and loosing my hair would be evident. My husband was with me every appointment and is great about everything. First I told the friend I felt the most comfortable to. We told the kids and their spouses, then all our siblings. After that it just got easier to tell all my dearest friends as I felt the time was right.
I'm glad they all know now, I'm amazed at all the kind ways each individual has blessed me. I've grown closer to all of them. I so appreciate this forum though. I think I feel strange talking BC, SE and so forth with people who really can't relate (thank God for them!) I feel a bond with all of you, I can honestly say I couldnt have understood if someone had told me the places BC takes you, physically, mentally and emotionally.
Thank you all for sharing.
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