July 2020 chemo club
Comments
-
KMom57...I am sorry you had such an experience. How helpless you must have felt. I have had 2 different nurses while getting my treatments and both were great so I can't speak to your issue but I would find a new facility to get my treatments. I pray you keep your hair even thru this mess up. 🤗🙏🤗
0 -
Thank you iamloved. I’m devastated. If I keep my hair through that, it will be a miracle. And when I say it was working, I’m on Round Two and haven’t had enough shedding for anyone to even notice. Including me except for one spot near my forehead part. None on my pillow, ever yet, very very little in the shower. I get a little bit when I brush but honestly not even as much as I shed when I started letrozole. That was far worse.
0 -
By the way, none of this is the fault of my MO. When it became apparent this was a cluster going from bad to worse, I burst into tears, picked up my phone and texted my MO, who was downstairs in clinic, from the chair. Probably three minutes later, two nurses came running in, followed by the nurse mgr (who frankly made the situation worse from my perspective with her patronizing demeanor and excuses, and by telling me with a straight face the nurse had done many DigniCaps, which I find hard to believe given she's only been in oncology since March and there aren't a lot of Cap patients there, and by helpfully letting me know ahead of time that if I lose my hair it was never a given anyway and not their fault, at least that's how I interpreted it.
As to finding a new facility, there aren't any others here. I'm debating moving my last two to the NCI center who manages my care. It's 5 hours but still. I can't go through that again.
Also, the nurse manager’s takeaway was next time, the nurse should make that call to the DigniCap rep outside the room where the patient can’t hear and get scared. Which a) she should know won’t work because the nurse needs to be AT the machine I’m attached to where the rep can see it on FaceTime and b) sounded a whole lot like “If you screw up big, don’t let the patient know.
0 -
Kmom57, so sorry to hear about your bad day. It really sounds like an annoying experience. I'm also cold capping and I know how stressful it can be. Try to stay positive, you at least had cooling some of the time and maybe it will be enough to save you hair.
I would however make sure if you go back to that facility, to ask for a nurse that knows what she/he is doing.
I'm crossing my fingers for you and for your hair. And I hope this cycle isn't to hard. Stay strong.
0 -
That's the most upsetting part kukalona. I did request the experienced nurse, and my MO specifically scheduled me on a day she'd be there, AND requested her. He told me he'd take care of it, and he keeps his word to me so I believe he did. What I think happened is this.....my first round was really uncomplicated. No reactions, no issues, I'm relatively young, in good shape other than BC, my labs were great. Nothing to worry about. And I was using DigniCap and according to the one nurse, they have trouble giving equal DigniCap training time to the nurses because they don't have a lot of people using it. So they gave me to the least experienced nurse on the floor (in oncology since March, less than half as long as my unfortunate experience in cancer treatment) for training because I was easy, nothing to watch for, not a lot she could screw up in the infusion AND she gets some hands on DigniCap training. Only problem with that is that I didn't sign up to be a training mannequin nor am I paying the hefty DigniCap bills to train the nurses. That's how I see it. To say I'm both furious and sad/scared would be an understatement. I mean, she was nice, other than leaving me attached to the machine and going home without telling me. But
0 -
Happy Saturday!
Kmom - so sorry to hear about your horrid experience yesterday! I can only imagine how frustrated you must be. Hoping you keep your hair and things only get better from here.
SMichaels - thinking about you ... I believe you were to get an MRI but can’t recall if you’ve already had it. Hope things are looking up for you.
I had my 2nd infusion Monday with Neulasta patch releasing on Tues. My bones really hurt on Wed! Weird too - more like my jaw, neck, clavicle, etc. - not what I would have expected. I probably overdid it by going to my daughter’s golf match that day but am trying really hard not to miss my kids’ activities. I’ve been taking Claritin and it seemed to work with the 1st infusion. Pain lessened by Thurs and gone by Fri.
I’m looking forward to the next week with no treatment. My kids start back to school (in person) end of next week. Anyone else’s kids going back to in school learning?0 -
Hi Britton KB. Sounds like you are doing well. Glad to hear it. No, My daughter isn’t doing in person. We are homeschooling. We started back on Monday. It was kind of nice getting back to something that resembles a schedule.
0 -
I'm so sorry to hear about your horrible experience KMom -- it sounds stressful and awful. Hopefully you still have a good outcome with your hair.
My husband shaved my head yesterday (Sunday). We just buzzed it down for now, we'll follow up with the razor in a few days once the rest of it gets patchy. I was obsessively running my hands through my hair Friday and Saturday fascinated by the sheer amount of hair coming off of my head, which of course led to some bald patches. I am going a slightly different direction than some of you -- I haven't purchased a wig and I don't think I'm going to. I have a few head coverings to wear if my head gets cold or I'm going somewhere and I want to try to blend a little better -- but for the most part I'm going to rock the bald is beautiful look. My two best friends -- we've all been friends for 25 years now -- are going to shave their heads in solidarity.
For the most part I have felt pretty good for the last several days. I'm mostly not taking nausea meds or anything other than Imodium. I have had energy and could focus on things, which has been a nice change. I go in for my second infusion on Friday though, so this is all a reprieve.
I hope you are all doing well.
0 -
Awesome, Melbo! Keep rockin’ that bald is beautiful attitude!
Brittonkb, sorry to read you were having pain, but I am happy to read it was better by the end of the week.
0 -
Thanks Melbo. Love your smile in that photo. I’m on Day 4 post infusion #2. Feel ok. Except I have an elevated alkaline Phosphatase again, up from last time, so I have PET scheduled for weds. I’m pretty scared. And mentally/spiritually exhausted.
0 -
Melbo - You look great! Love the smile!
KMom - I'm glad you're feeling ok but so sorry to hear you need a PET. I'm sure it's scary and exhausting. I'll be praying for good results for you!
0 -
Hello Ladies!
Melbo... You look beautiful! Kmom57.... so sorry you had to endure that! I will be praying for your PET scan.
I had my 3rd chemo last Thursday. I was about 10 minutes in my infusion and I started to feel really weird. Back hurting, tingling, strange sensation over my body and just overall weird. Well, called my nurse and she ran in there with every other nurse and then they went and got my doctor. Come to find out, they did not give me the steroids. My doctor was trying to see to skip it this time so I would not get insomnia. I have never complained of insomnia before so i would have liked a little heads up that they were skipping that med. But, I ended up getting the steriods and then I did just fine after that. So, I will ALWAYS be getting steriods from now on. So, I go for my 4th Chemo on Thursday. Hopefully, the 2 hurricanes heading our direction will not cause me to have to cancel it. UGH. I still have had no bad side effects from Chemo. I might feel a little achy today, but, I never know if it is in my mind, chemo or cancer has spread more (God forbid). Such a roller coaster! Thinking of you all in this process. Prayers for ya'll daily!!!
0 -
Kimintx thank you. Prayers are appreciated. Glad your side effects are so limited. Hope Thursday goes well and not sidelined by the hurricanes. You’d think cancer during a pandemic would be enough to navigate, wouldn’t you?
0 -
Melbo: you are absolutely beautiful and rocking it!!!!
What started out for me, being an infusion #3 filled with rainbows and butterflies...has kicked me in the butt! I have not felt this bad this entire time... Even though I was able to take half doses of the steroids, I have not been sleeping or napping. Maybe it’s because I have not been doing anything, but I feel too bad to do much of anything. I had a really nauseas dizzy spell Saturday and had to lay on the bathroom floor for a while with my pillow and blankie. I haven’t gotten the diarrhea this time, but I’ve been constipated, but I’m afraid to take much because I don’t want to go too far one way or the other. I thought I had this all figured out but then it changes! And again, food is so terrible. Even my stand-by yogurt that has been tolerable I could barely stomach today. I’m making some curry stew, to put on top of plain white rice and am hoping and praying that I’ll be able to eat some of that. My husband did make some halibut last night and I was able to eat a bit of that. I get to go in tomorrow for fluids and that I’m hoping will be my saving grace. Being down and out and feeling this bad for a week is for the birds!Here’s hoping that you ladies are having an absolutely fabulous week! Cheers!!! (With my pink sugar free Gatorade...because I couldn’t even imagine what a White Claw would taste like right now!!!)
0 -
mtspacekace...sorry to hear you are down this round. I know what you mean about being down for a week. But I did get a chuckle out loud at your last sentence about White Claws. I will tell you from my experience since chemo they taste like 💩🤣 Hoping you rebound soon!
0 -
Hello ladies!
I’ve been a bit MIA since my treatment on the 14th...you know life🤷♀️. Dealing with virtual/homeschool for my 1st grader, my 3 year old and working full time.
so much to catch up on but I did read everyone’s posts.My 2nd infusion is went well on the 14th and I did not experience as bad of symptoms as the first time. I am now dealing with a terrible face rash which I did get last time. It lasted about a week so I’m thinking it will be the same. Anyone else dealing with the rash?? Other than that I still experience an overly salty taste with a lot of food and a little dry mouth. I did meet with a plastic surgeon the other day and it seems so overwhelming to decide on who to pick for a plastic surgeon. What is everyone doing with surgery?
0 -
I had a terrible acne rash on my face, head, and chest. When I called the symptom line and mentioned it, the nurse told me to take Claritin and Pepcid. The rash mostly cleared up after that and was definitely less itchy and gross feeling
0 -
Not functioning well today. At all really. Physically fine. It’s like I’ve hit an emotional and spiritual brick wall. I can’t even drag myself out of bed.
0 -
I’m so sorry to hear that KMom. Hopefully a day in bed will help. I’m a big believer that sometime you just have to live with your cruddy feelings. Especially those of us participating and lurking in this forum — we’ve been dealt a sh*tty hand and it’s okay to be upset by it. Hell, it would be more surprising if it didn’t knock us on our behinds every now and again.
All that being said, I hope you feel better soon.
0 -
Hello all,
Nottoday...- yes, I had a bad rash after treatment 2. My oncologist said it was actually two different things- Perjeta rash on face that was like rosacea, and folliculitis rash on my head and neck. It was pretty miserable. At the time it was suggested I take antihistamine and use hydrocortisone. After I showed her pictures when I came in next she said I can get an rx if it happens this cycle. Lesson learned for me that a picture is worth a thousand words!
I am day 6 round 3. Finally feeling less brain fog and a bit more energy. I work FT but have taken a nap after work and gone to bed at 8pm most nights since chemo! I am grateful it is just me and my husband and I don't have little kiddos at home!
I will be meeting with a plastic surgeon soon, yesterday I got a vm to schedule. I too feel a little overwhelmed. I have been so focused on just getting through this first part (chemo) that I have not allowed myself to start thinking of the many more steps of this process I will need to take. It makes me feel a little weary.
Kmom, hang in there, I have had some of these days.
Mtspacekase hope you are feeling better now. I am always checking out how you are doing because we have the same treatment but you are a couple days ahead of me!
0 -
melbo-did the Claritin clear up the face rash??? I might have to try and see if it help
0 -
It cleared up a lot of it. The nurse said to take the Claritin with the Pepcid though — something about how the two drugs targeted different things causing the rash. She also said I could use hydrocortisone cream on my chest and neck, but she didn't recommend using it on my face.
0 -
KMom how are you doing? I've been thinking about you and hoping you had already pushed through the emotional funk.
I'm going for chemo infusion #2 of 6 this morning. Rationally I know today won't be too bad, but I'm still nervous about it and dreading next week. On the other hand, my larger tumor, the one I could feel which caused me to go to the doctor in the first place, is noticeably smaller. You can still feel it a little bit when you poke around and search, but it's not nearly as big as it used to be, so that's something. My oncologist said I wouldn't get new scans until the surgeon asked for them, which would be much closer to the time of surgery. Knowing that the chemo is working on the tumor does make chemo a little easier to face.
I asked my oncologist about the cumulative effects of TCHP and he said the only thing that will probably get worse with each infusion is the fatigue and all of the other symptoms should stay about the same. That was somewhat bad news to me since the fatigue was awful the first time around -- I spent 5 days on the couch mostly sleeping -- but I suppose it's good that the other symptoms won't be any worse. I know several of you are ahead of me in infusions -- has that been your experience?
0 -
Melbo—best of luck today! My SEs after my second TCHP were not worse, but they were slightly different. Diarrhea was a little better (as were cramps, which I attribute to the addition of Bentyl), nausea was a little worse. Fatigue, as promised, was worse but not significantly. Burned mouth feeling was much better, but weird taste lasted longer. Now I’m dealing with very sore eyes and a runny nose, which I think is a cumulative side effect of taxotere. Some numbness in my toes also lasted longer this round. Annoying but not major SEs, so I’d generally agree that the second is not markedly worse than the first.
The one thing that was a significant change to me was my mood. I felt much more irritable and pessimistic after my second infusion. Irritability is a legit and significant and under-discussed SE (plus it’s a SE of the SEs too!). Kmom, I wonder if maybe you are feeling low as a response to the drugs and not solely as a response to the shitty situation. Either is 10000% valid and real—I only mention it because it can be helpful to consider that you might feel better as you get farther from the last infusion. It helped me to keep reminding myself that I would feel better in a week. It also helped to take a low dose of clonazepam, the anti-anxiety medicine I’ve been prescribed, which just made me feel a little calmer and more patient. It didn’t occur to me to try this until later in the crappy SE week, so I’m gonna try taking a low dose as needed earlier on next time.
Good luck to all!
0 -
Thanks for thinking of me Melbo. I’m climbing out of my dark hole. Happy for you that the chemo is working. In answer to your question, I’m not doing TCHP, just TC so maybe not relevant, but the physical side effects of infusion number two were far less troubling for me than Round One (with the exception of hair shedding, that’s worse). I only took compazine for a day and half this time. Good luck on number 2. Will be thinking of you.
Anna, you might be right. I hadn’t thought of that but it could be partly the effect of the drugs. And side effects of the side effects. I’m also approaching one year of dealing with cancer, and scans and treatment and am exhausted I think. And approaching the 9/11 anniv which always throws me off (survivor of that). I also had a pretty bad scare this week with rising lab values, and MO wanted a PET. As you can see my path was pretty bad, and it’s been nearly a year since my last PET, so I was terrified what they’d find. It was clear. “Normal” he said. I asked how normal...are we watching anything? He said “as if we pulled a random woman off the street and gave her a PET.”
On a brighter note, today I get to take my daughter (myself) to get dance stuff! I called the store to ask when is the safest time to come in (least traffic) if I’m immune compromised, and they told me they’d make an appointment to open and I’d be the only one there! Feels almost like Christmas!
0 -
melbo-my 2nd infusion has far less severe side effects than the first. I’m not sure if everyone has looked for the loading dose of the first round But it had significantly higher dosing medications than the rest. I’m hoping that first round was the worst in terms of recovery. I was down for more than a week. The 2nd round I started feeling better within a couple days but dealt with symptoms on and off for a week. I’m on that sweet spot between cycles where all of my side effects are gone and I’m already counting down til next Friday (my 3rd cycle) . I feel like I like to indulge in the things I love to eat while it tastes normal before my taste goes again. Anyone else do that also?
0 -
Yes I do that too. I actually am letting myself eat whatever sounds good as a general rule. I figure if ever my body ought to get to be indulged and getwhat it wants, it’s now. I’ll get back to my healthier diet when I’m done.
0 -
Happy Friday! I was able to have my infusions yesterday because Houston area did not even get rain. I also had an office visit with my doctor and she informed me that my liver enzymes were all back to normal levels which means the chemo is working my liver too. That was some good news. I had another slight reaction to Taxol even after steroids. So, they made it were the drip was for 2 hours instead of 1 to go into my body slower. It did work. But, she said they are switching me from Taxol to some other taxol that has a protein base, it starts with the letter A but I can not remember the exact name. I hate changing up anything when I know something is workiing but I suppose they know what they are doing.
Prayers for all! Have a good weekend.
0 -
Nottoday — I asked during my infusion if my first infusion was front loaded. The nurse compared the numbers and she said the only medication that was front loaded was the Perjeta, everything else was the same between the two treatments.
The infusion itself went fine. My lab work was all good, they accessed my port with no issues, and the only side effect was some temporary mild tingling in my pinky fingers during the Perjeta and Herceptin infusions. The big difference so far is that after the first infusion I was hyped up and wired from the steroids. This time I’m tired, cranky, and my stomach has already started cramping.
One of the other things I have been experiencing has been periods of time where I have been freezing cold but don’t have a fever. I have experienced it around my house off and on for the last couple of weeks, and I was freezing during the infusions today. The type of cold where you can feel it in your blood and bones as it radiates out to your skin. I mentioned it to the oncologist and he wasn’t sure what could be causing it. He said maybe because the chemo medications were affecting my hormones, but if that was the case he would think I would get hot flashes, not freezing flashes. Any one else experience this or know someone who has?
0 -
Good afternoon everyone. I had my 3rd infusion on Thursday. Everything went well. I took 2 good friends with me who tag teamed being with me in my Room. I am feeling a bit more fatigued on day 3. I agree with the eating whatever tastes good. I did get through again with my fasting. I'm happy I'm able to do that so when I'm done with this chemo I can get back to my intermittent fasting schedule. And my crazy friends brought these hats for us to wear at the center during the treatment. We were "Fishing for the cure" It sure made for a fun day and tons of comments from the staff! Anything to lighten the mood my friends said!
0
