November 2019 Chemo Club
Comments
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So glad to hear you're doing so well Eigna! That is awesome
I am moving house today. Not the whole house but just some things I will need for the week. I am going to my fiance's house to stay as my landlords have returned home (they were splitting their time between where I live and the coast of BC but are now home permanently). They tend to keep the heat low in the house and that makes it hard for me when I get the chills sometimes during the bad chemo week. I will have to leave my Sam cat behind but will visit every day or Mark will. His home is warm all day and nobody walking around upstairs so I will be able to sleep during the day. The steroids have worn off now so just feeling less energetic and a little low but I expected that. Will stay on top of my meds this time and rest a lot. Here's to watching the big screen TV at Mark's with his kitties cuddling me It came to my attention on another board that what I wrote about the man who didn't take his anti-nauseants could have come off as mean or uncompassionate. THat was not at all my intention so I apologize if that offended anyone.
Have a great day all and keep those updates coming!
Charlie
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i think I'm g to use my treadmill just to be on the safe side 😉.
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Hey Ladies, day 3 of round 1 TC today. I’m feeling ok. A bit tired. No nausea. Didn’t sleep well though yesterday night. I did the Neulasta injection yesterday night and took Claritin. When does the bone pain start? So far I don’t feel anything but it’s less than 24 hours.
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Happyfor you Eigna that all is going well. Maybe you won’t have the bone pain! My OnPro went in about 4 pm the day after treatment and It was the next morning that I first felt it in my artificial knees( Go figure!) , then it was gradual and worsened thru out the day and mine lasted about 5 days. So be sure to keep taking the Claritin even if u don’t have any pain. I’m happy for you that you’re doing so well.
I will be more prepared next week for mine. I’m going to try CBD oil and oxy if I have to.
Hope you have a great day
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Round 2, Day 8
Yay Eigna! So glad you're doing well and feeling like walking! I certainly didn't on my first few days after infusion. Margo's "take lotsa naps" advice has been my go-to for the first 4-5 days post-infusion. It is definitely what my body seems to tell me to do. But movement and exercise is also highly recommended, so if you've got the energy, please go walk some for me too!
Margo, I'm glad my silly photo made you smile. And so sorry you are having such issues with bone and joint pain. Does it at least subside some after the first week? If not, I'd definitely be asking for some more serious painkillers so you don't have to continue suffering. We suffer enough with all of the rest of it!
So yesterday my physical therapist said it looks like I may be developing lymphedema. I am only three months out from my surgery and my swelling percentage is right at the borderline of the diagnosis numbers, but she wants to start addressing it fairly aggressively just in case. There is still a chance that it is due to some of the wild weight/swelling swings I've had with chemo so far, and I have not been doing myself any favors with the amount of salt I've been eating lately to try and add some taste to all food tasting like nothing, but now I'm terrified I've got a whole new possible life-long problem to deal with because of this damn cancer. So for the next week and a half before I go back to PT, I have to stop being a slug and really concentrate on doing all of my exercises, drinking a ton more water, and avoiding salt as much as possible to see if I can keep this at bay as best as possible and try to avoid being put in a compression sleeve. Given how hot-natured I am, I'm hoping that the idea of the sleeve may actually be enough to motivate me. We'll see. Has anyone else had any lymph issues at this point?
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Hi Karen,
Yes my bone pain definitely subsided after the first week. Other side effects have been very manageable. A tiny bit of nausea and the taste bud issue is pretty much all. I did not on my Medicare summary that ONE of the nausea meds given IV before chemo was $1000. So at that price, there shouldn’t be any nausea. Unbelievable! The oncologist billed my insurance for one treatment a total of $18,000. 8 of that was the Neulasta. That just blows my mind!
I still have a little swelling in my upper arm, underneath from my surgery which was the end of a September. Who would order PT if I needed it for lymphedema? Surgeon or oncologist? No one has told me to do any exercises, the surgeon was very focused on getting rid of the seroma, which could be some of the swelling still.
Hope everyone has a great weekend
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Eigna, my neulasta shot is on a Tuesday, and I felt the bone pain on Saturday. With the first cycle it was just on Saturday. I woke up feeling it, experienced it the entire day, and it was gone when I woke up on Sunday. With the second cycle it lingered a little longer. Saturday was still the main day, but I periodically felt little jolts of pain for days after. Are you taking nausea pills as needed, or on a schedule? I take mine as needed, and by Wednesday night I sleep better when I take one at bedtime. Before that my pre-meds are working for me.
Margo, I'm curious about CBD too. I may try it out this upcoming cycle.
Karen, I just learned that Kathy Bates had ovarian cancer, breast cancer,, and lymphedema following a mastectomy. I'm doing chemo before mastectomy, so I have no experience yet, but I am curious. Let us know.
It's funny, I'm eager to get this third cycle started. Tomorrow is my pre-chemo bloodwork, and then I'll start getting my steroids and antihistamines out to prepare for Monday. Dare I say that I'm excited? LOL It's just that I'm doing four cycles total, and it's as if I'm starting to see the light at the end of the tunnel. Once this one is done, I can say that the next one is my last. Granted I have a mastectomy next (I'm thinking of doing double without reconstruction), which is a world of anxiety in itself, but things are moving along.
Do any of you notice that your hair is growing? It's hard for me to tell because it's still stubble, but I'm fairly sure that mine is longer than it used to be. And, it doesn't fall out like it used to. I know that not everyone loses their hair while on chemo, but I thought that since mine did fall out after the first cycle, that the following cycles would take out what was remaining. I keep looking really closely at it in the mirror trying to determine what is happening LOL.
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Thanks Dixie for the bone pain reference. So if I did my Neulasta injection on Wednesday i might get bone pain on Sunday... we shall see. I’m not taking any meds for nausea as I am not feeling nauseous at all. The only symptom I am experiencing now is some muscle aches on my back and shoulders and tired... thinking of taking Tylenol but I am reluctant to do so. Should I ? The aches are tolerable. It’s just that it’s not fun to feel like this.
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Karen - I am so sorry about your lymphadema issue. This is something I am worried about in the long term for me too. You never know when it could appear. I think the earlier you start treating it the better outcome you will have. So try to do whatever it takes to resolve the problem now not later on.
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Day 4 Round 1 TC. Yesterday night I started to feel muscle aches back and neck. At the beginning they were tolerable but as the night progressed I felt horrible. I ended up calling the emergency hospital line they gave and was able to talk with an oncologist on call. He told me to take Tylenol. I took one dose yesterday night which didn’t help much and this morning I took a double dose like he suggested. I feel better and more functional than yesterday. Hope these muscle aches go away soon. Does anyone else have this symptom? I’m hoping in a few days for Christmas at least I will feel better...😔.
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Round 3 Day 5
The exhaustion is here but hopefully the constant low-grade nausea is gone for this round. I don't know what I hate more. I think I will go with the nausea. Dare I hope the worst is over for this round and now my strength will improve daily and by Christmas Day I will be my jolly ole self? I sure hope so
One more round of this shitty cocktail and that is it. Thank the heavens and stars!! Dixie- you are almost at the finish line and that is very exciting for sure!
Eigna- I hope the muscle pain is tolerable for you today and you are able to find relief and relax
Karen and Margo- I am sending all my most powerful healing vibes that the swelling you are experiencing goes down and lymphedema is avoided!
Keep on truckin' ladies. You are strong amazing warriors!
Charlie
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Eigna.... so sorry you are having a hard time....I’m wondering is your muscles aching could also be from the Neulasta? I guess there is no way to tell for sure. Have you tried Advil? It might work better. Or alternate Advil and Tylenol....if those don’t work, I wouldn’t hesitate to ask for something like Tramadol.... but that’s just me....anyway, I hopeyour pain subsides very soon.
Charlie.... I hope you feel stronger tomorrow and the nausea stays away.
Wishing everyone a good Saturday!
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Day 5 Round 1 TC. Today I feel a bit better. No achy muscle pain. Last time I took Tylenol was at 4 am. I still feel tired but not like the other days. I am a bit congested. Not sure if it's due to the treatment. Anyway it's tolerable for the time being
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Thank you for posting vital. I am sure your wife really appreciates how well informed you are about her cancer and your support.
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Welcome Mariadelpilar
Let us know a bit about yourself. 0 -
Round 3 Day 8
I am guessing this will be a Wild Card day and I won't know exactly what to expect symptoms-wise. So far just some slight nausea and fatigue but I was able to sleep through the night. I managed to get some garland with lights strung around the staircase but needed to stop for a couple of breaks and we're not talking a long staircase here lol. I am hoping to get out later today and pick up some last minute grocery items and a card for my sweetie. I haven't been able to get him one as we were always shopping together. We'll see how much energy I can muster later today. I have zero patience for crowds so may wait until tomorrow when I will hopefully have bounced back completely.
I hope everyone is enjoying the season to the extent you are able. What's the weather like where you are? We are expecting snow on Christmas Eve so that is nice
Charlie
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Hi! Angie here from the September group. I just wanted to pop in and tell you that you are amazing warriors and you’ve got this!! Even though it may feel like it, this is a temporary stop on your fight path. You are all doing amazing!! Keep your heads up! ❤️
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TC Round 2 Day 12
Sounds like we've all been getting knocked around by SEs here lately. Chemo sucks.
I am just coming off of a horrible stomach bug that had me puking for 8 hours straight on Friday and then kept me in bed all weekend trying to figure out how every single muscle in my body got hurt puking for 8 hours. Clearly my immune system has given up the ghost on me and I am just going to catch every single little viral/bacterial anything going around. Which means I definitely made the right decision not going home for Christmas - my family is always a hotbed of germs and the last thing I need is to be sick there and be unable to get back here.
I hope everyone is managing the various issues we're experiencing and that we can all manage to find some peace and some fun in the holidays. We deserve it!
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Winter weather here is mostly cloudy and rainy. Temperatures vary by day almost, but cold for us is 50's and 60's. Anything below that does happen, but infrequently, and you would be laughing at the way we react to it.
I got the phone call from the geneticist today, they tested for 32 genes and I'm negative for all of them. I was in my parent's driveway, dropping my mom off from my chemo appointment, so I went back in to tell them, and she cried. I can't imagine what it's like to be the parent of a child with cancer. Even as an adult. She's strong in front of us, but I bet she'll be tearing up whenever she thinks about it tonight. I'm still triple negative, so I think my Dr. will reccomend a mastectomy. I would prefer to have them both even, so a double mastectomy. We'll see what the surgeon suggests as well. I know he likes to lean toward reconstruction, but I don't think I want to deal with extra surgeries, and healing. I've never been the type to flaunt my cleavage anyway. But, I didn't think that losing my hair would bother me as much as it did, so I do worry that losing my breasts would make me feel like a mangled mess. What have you all done?
Today was cycle 3 day 1. It was BUSY. I got there at 7:30am and was out by 3:30pm. Lab work took a long time to come back, which delayed the chemo. My poor nurse kept thanking me for my happy demeanor, because she was having some disgruntled patients in other rooms. I regretted not having a little gift for her. Maybe on my last cycle I'll bring a Starbucks giftcard or something.
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Dixie....when you said your genes were negative.... excuse my lack of understanding, but is that good or bad? I guess I’m confused about triple negative.
You will know the right thing to do for you and you know your body best. I really can’t speak to mastectomy/ reconstruction because I only had a lumpectomy. How many more treatments do u have?
Today was Cycle 2, Day 1 for me. I iced my hands and feet like last time, but my feet have felt different this time, like tingling, pins sticking in.... Not sure if neuropathy would start this soon? Other than that just tired...I’m sure I’ll go to bed early.
Hoping everyone can have a Merry C
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so sorry about your stomach bug Karen.... ughh! I just can’t imagine....Hang in there! Hopefully you’re on the mend from it and can get rest
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Hello everyone... I’m sending you this post from my hospital bed. Day 6 and Day 7 of round 1 TC didn’t go very well. I ended up with fever and at the ER. They took me right away. Just need to say chemo and they react. My white blood cells are very low and I have an infection which we don’t know the source of it. They are treating it with intravenous antibiotics. I guess the Neulasta injection didn’t work for me. They might give the neurogen injection to boost my count and maybe then I will be able to go home. So I’m hoping I’ll be home for Christmas. It really sucks not being home for christmas. My poor kids. What can I say. Wish me good luck as tomorrow they might decide if I go home or not.
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oh Eigna..... so sorry you had to go to the hospital but hopefully the antibiotics will take care of it and you will be home for Christmas!! Maybe your dr might could order a Home Health nurse to come give you your IV antibiotics at home?? I’m very interested to know the source cuz we are all potentially in the same boat regarding things that can happen to any of us too!
Did they do blood cultures also?
Please keep us posted!
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Eigna, I am sending you all of the prayers in the world.
Margo, I'm sorry, I know that I ramble along thinking that everyone knows what I mean. The geneticist tested for the BRCA gene as well as others that may have been a catalyst for me developing cancer. I'm 44 years old, which is still considered young for cancer, so they wanted to rule out genetics.
My tumor is triple negative, which means that it's growth is not controlled by estrogen, progesterone, or HER2. Which also means that hormone therapy will not work on it. So my doctor has me doing chemo while I still have the tumor in order to see if this chemo cocktail shrinks it. If this one didn't work, I would have to do 4 weeks of a different cocktail to see if that one does work. Without the tumor, he wouldn't know if the chemo was working. So I get to knowingly live with it for months, hoping that it's not spreading. Thankfully the chemo is working. After this, with no use of hormone therapy, it's just a waiting game of if, or when, it comes back or metastasized because triple negative is aggressive. It's scary how fast mine grew.
I'll be checking in over the holidays if those of you who are feeling ill want to pop in and chat. It's a chemo week for me, so I won't be out too much.
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Dixie, I had a double mastectomy in September. I pushed for it as ILC is sneaky and hard to detect. Left breast was clean, but still peace of mind for future. I also am OCD and wanted them even too, lol. They were going to do a reduction on the left anyway, so why bother keeping it. I also was negative for genetic testing so I had to push a little harder. I had tissue expanders put in, followed by surgical infection, so they were removed. I am a mangled mess. Now they have to wait due to chemo and radiation. Both second opinions recommended DIEP. I was a saggy double DD on a petite frame and tried to hide them my whole life. For me its not about having great boobs, its about looking like myself, hopefully a better version. I am nervous to have implants, but DIEP would give me pretty small results if possible at all. My doctor originally said no for two. So I am still torn with what to do now that I have time to think, but will probably do implants. So you have to do what you think will make you comfortable. 4 cm is probably a mastectomy. I was in a lot of pain for 3 to 4 weeks after surgery in chest area. Arm movement was not that bad. The TE surgery probably increased the pain. Look at it this way, if you do implants and hate them you can always have them removed. I've been wearing knitted knockers, which are great. Homemade implants from stuffed animal foam made for free for cancer patients. Which gave me the idea of just taking the foam from Michaels and stuffing it into m sports bras that already have cups. Works great.
Sorry to hear about everyone's side effects. I'm happy to not be puking or feverish. But still depressed over chemo brain setting in permanently, dizzy, fatigue and hair loss. Lucky to not have treatment this week.
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Dixie..... thank you for explaining So well! I think I had a selfish tendency to read up on only my type cuz it all was so overwhelming.....it’s amazing all the different types and how they react to different things....drugs, treatments, food , etc. so glad your chemo is working and I pray that good things and success continue with you.
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Dixie, I had double mastectomy on Dec 2 with intention of doing the DIEP reconstruction but sentinel lymph nodes were positive on right side so expanders were put in - I will have surgery again after chemo and before radiation to put the implants in. Before surgery I had read that some women felt like the mastectomy was an amputation - but I have not felt that way. With 5 positive nodes I was eligible for body/organ scans and they were all clear!!
I think that waiting for the scan results helped me put the mastectomy in perspective. It took me about a week before I would look at the scars - and I can honestly say that I am okay with this "new normal". Please let me know if you have any specific questions re: mastectomy0 -
Angie- thank you for the pep talk- looks like that is sorely needed right now for many of us!
Karen- my goodness. I'm surprised you weren't hospitalized after throwing up for an entire day! That just sounds awful! How are you feeling today?
Dixie- like yourself, I am also triple negative. I didn't do the gene testing so I am not sure if it's a genetic thing. I am on both chemo cocktails for that but had the surgery first. I worry about recurrence but my oncologist told me, since they got it all during the surgery, that it's basically like I am starting at zero and recurrence is what they are avoiding with the chemo and radiation. Basically if anything comes back, it will be a new cancer, not the old one rearing its ugly head. Still scares the bejayzus outta me. I told my fiance, if this comes back in any way, shape or form I am getting a double mastectomy no question. I am not going through this over and over again if I can help it.
Margo- it sounds like you're doing relatively well, neuropathy notwithstanding. I hope you are able to have a symptom-free Christmas
Eigna- my goodness you poor thing! I sooo hope you're well enough to be sent home but I would hope they ensure you're healthy enough to do that before letting you go. Yes, it sucks to be in the hospital at any time, and especially at Christmas but I would rather be there than deathly ill at home. Please keep us posted!
JRNJ- I hope your SEs ease up and you can enjoy a symptom-free Christmas this year. I am so sorry you are a "mangled mess". That sounds so hard. I know whatever decision you make will be the right one for you
As for me, I almost feel guilty for admitting I have no complaints. The side effects have worn off for this round and now I get to enjoy my time with my fiance and his sons and the kitties.
Wishing you all a happy and healthy as can be Christmas.
Love Charlie
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JRNJ, I've always been larger chested too, so part of me welcomes the no reconstruction idea. The ease of just throwing on a shirt, sans bra, sounds fantastic. Because of my circumstances, I don't see them leaving any of the breast on the cancer side, so I'm preparing for completely flat. Ideally, a reduction with a little something left (an A cup) on each side would be nice. My doctor team was waiting for the genetic results to discuss the surgery options so I'm still unsure of what they'll be recommending. When I met with the plastic surgeon weeks ago, he seemed very proud of what he can do as far as reconstruction, but I really don't know if I want additional surgeries. He was going on about tummy tucks, and liposuction, in order to create breasts because he didn't think that implants would be an option for me. But, he would have to wait until after I was done with radiation, and than I go back into surgery to finish the reconstruction... it just sounds like more recovery time in other areas of my body, that could possibly not heal right, missing out on work... But, will I regret going flat aesthetically? It's a decision.
Charlie, my first reaction in the beginning was to take both breasts. Each time I went in for results from tests/biopsies, it was one bad news after another. The genetic test results yesterday was the first bit of good news that I've heard from them. Now that I've had time to understand cancer, and calm down a little bit, I'm at least willing to consider other options.
Anyway, Merry Christmas Eve everybody! I'm thinking of running to the grocery store real fast to gather ingredients for a last minute side dish.
Here in Louisiana there's an area on the river that does bonfires to light the way for "Papa Noel", and I love to experience that, so we'll go take a drive in that direction later tonight. I'm including an image that I found online of an aerial view of them along the Mississippi river levee. It stretches on for miles. Each structure has noise maker fireworks inside, and they light them in order, so you can hear it coming towards your direction. It's pretty fun. The kids LOVE it.
Looking at this photo, I'm wondering if I should bring a face mask as to avoid breathing in too much smoke.
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Dixie. Very cool. Fun to see what’s happening in a different part of the country. Although I do air pollution control for the state and that would never happen in NJ lol.
If you’re ok with a smaller size I would do natural recon. No foreign object in body and I see the tummy tuck as a bonus lol. But whatever you are comfortable with. I’m also stressing about work but this is for the rest of your life.My dr also waited for genetic testing and recommended single but I made decision for double because mammograms don’t always see ILC.
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