Starting Chemo April 2020
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Allie's Cats — Happy Memorial Day Weekend!
Put on your imagine ears as this Grandma shares a silly story. Three and a half years ago when I was creating something fun for my then very young GrandChuckles to look forward to instead of being frightened when I lost my hair to chemo, I joked about becoming a Hairless Grandma. I showed them photos of a hairless cat and a Chinese crested dog. We talked about no eyelashes and no eyebrows.
The littlest GrandChuckle who was three became very quiet then asked ... “how will your boogers stay in your nose? — they won't have anything to hold on to."
Just the thing a little boy would think of. LOL
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j
P.S. This same precious child says I'm a unicorn and tells everyone when I toot he sees rainbows and smells Starbursts.
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J- lol omg you are seriously magical!! Btw I love the name grand chuckles!!💗💗
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J,
Thank you and happiest of holidays to you and yours.
Your story is amazing! You have given your precious GrandChuckles a precious, precious gift for life.
And the little one who observed about the boogers: genius!
Allie
Nasally Challenged
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Katie and Allie — I call them GrandChuckles because we laugh together so much ... they’re more fun than puppies. This Cvirus —- UGH and GRRR —- I miss them ever so much.
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j
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Glad I found a post that would be current with my timeframe. I read Tiffany’s pointers on chemo and amazed at the world of information here
Sueshe55/Robin FL/USA start TC chemo 4/26/20
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Sueshe55/Robin — thrilled you’re with us. The ladies here are extraordinary ... in knowledge, communication, caring, and every other way imaginable. Look forward too getting to know you better.
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j
P.S. This rainbow at the end of each of my posts is a reminder I’m blowing everyone a Texas sized hug and kiss. Catch it and place on your cheek. Whenever you’re feeling lonely, scared, nauseous, achy, or just yuck .... put your hand on your cheek and you’ll feel my hug wrapped around you and me whispering in your ear “Everything’s going to be ok.”
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Robin- welcome to the group!!😊 How have things been going for you since you started chemo??
J- your rainbow makes me think that after most storms there is a rainbow and we just have to get to that point!!
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Katie — exactly ... look for the rainbow after the storm/rain/flood ... it’s always there. Sometimes more difficult to find than others, but it’s always there
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j
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Allie - I already have seasonal allergies, so I take Claritan every day anyway. So maybe that's helping? My new "regimen" this time is that I started with the saline spray the morning of chemo - and I'm doing it 4 or 5 times a day - not just when I feel dry. In the morning and at night, I'm taking a Qtip and swabbing coconut oil up and around in my nose. I don't like vaseline or Aquaphor, both for the greasiness AND all the chemicals. Coconut oil is totally natural and has all kinds of good properties in it - not just the moisture issue. My Pepcid strategy seems to be working on the heartburn - I'm definitely feeling it lurking, but it's staying at bay so far. But I agree about the mildly queasy feeling. I've had that too. Thankfully, that part only seems to last about 3 or 4 days in this first week and then it goes away.
J - I'm getting my first grandbaby this September - a little boy! So excited. Something truly wonderful to focus on during this time.
Robin - Welcome!!
Kris
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Kris,
Thank you so much for the helpful details. I want to try the coconut oil for my nose and i will put on my shopping list! I love the scent of coconut and it is good to learn that it can also provde help to my nasal passages. I will use it also for face and hands and enjoy its helpful moisture and delightful scent!
I am very glad that the queasies you experienced have been held at bay by the Pepcid. You sound like me in that we prefer use natural ways whenever possible to manage things but at certain points we do have to take advantage of mainstream pharmacololgy where they can help us out so effectively!
At this point in my life, i just want to feel well/happy/stress-free..so if a little Prilosec or other medicine will ensure that, that's what i am going to do!
I am so very happy and excited for you about the new grandchild. I send my best wishes to you and your family!
Blessings and gratitude,
Allie
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Allie - agreed! My first approach is always natural-based, but I am not opposed to implementing medical strategies too, in balance. Whatever it takes to support my body through this in the most healthy way possible. Love that we can share ideas between us.
Kris
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Ladies, I jinxed myself.
Thinking I was being proactive ... I've been using saline nasal spray a couple times a day. Today I thought, I'll put some Ayr gel on a Qtip and moisturize. Boy Howdy, was I surprised — my nasal passages are bleeding. 🤦🏼♀️
I've only had one Taxol treatment, but I do have a few nasal allergies and sinus issues. When did y'all's noses start bleeding?
Kris — exciting. So happy for you. Some of the best medicine you can get.
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j
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J!
Oh no!
So sorry!
I bought the Ayr Gel but have not used it...
I gave my regimen in snore-inducing detail already but to summarize it is: saline spray, spray in a nasal moisturizer, steam my nose a couple of times per day and use a vaporizer at night.
Here is the nasal moisturizer I've been using for a few days: NeilMed NasoGel for Dry Noses. You just spray it up into your nose.
My status is that the congestion is down, the more pronounced bleeding is down, and I have not been having the soreness, but I still have some dried blood in the nasal openings in the morning. Today is the best day I have had in the past two weeks and last night I was surprised when I slept and was not up half the night with a stuffed up swollen feeling nose...
As has been pointed out to me, perhaps losing nasal hair is increasing my sensitivity and since you have known allergies, perhaps that is true in your case as well.
Maybe you should stop the Ayr Gel if you feel it is not helping or is actually causing the bleeding...small amounts of Vaseline, Aquaphor or Coconut Oil might be able to help...
Allie
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Allie — Thanks for the info. I used the Ayr gel for the first time today.
I've been doing the Ayr saline nasal spray, because it and a nettie pot help just general stuffiness. Didn't have a clue I was bleeding ... and it wasn't heaps, but was a surprise to see blood on the QTip.
And ... it only was the side where I have a 4 cm retention cyst in my maxillary sinus. It's grown so now it's pushing out into the nasal passage. Yuck — what nasty things we talk about which would be TMI in polite conversation and probably should be now. 🤦🏼♀️ In a pre Cvirus world that cyst would have been snipped out before chemo began.
The first Herceptin infusion stuffed up my nose like a brick, but this time the steroids, generic Benadryl, and Famotine were infused before the H. No stuffy nose.
How long after you started chemo did your nose start bleeding
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j
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J - I have had intermittent bleeding in my nose, mostly from dryness. It starts around Day 4 (counting infusion day as Day 1) and lasts about a week or so. It's not heavy - just some blood when I blow or on the Qtip when I'm rubbing coconut oil up in there. I started using the saline spray a couple times a day before chemo day this time and I'm continuing now and using the coconut oil in there twice a day. So far, I'm not having an issue, but today is day 4 so we'll see. I also live in Atlanta, so it's getting warmer and more humid, so I'm hoping that will help. I did have one bad day last time where I actually had a nose bleed in one side and I used a trick that the trainer at our school uses for wrestlers (my son is one). I cut up a tampon into small pieces and used that to stuff up in my nose. Stopped the bleeding pretty quickly! I do blow a little bit after I use the saline, because it helps clear the crusty stuff out, which helps the breathing, which gets air up in there, etc. It's a process. Hope that helps!
Kris
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Thanks Kris!
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j
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J and Kris!
Oh my God!
It started about 10 days after the second chemo on or around May 10th-ish. Rough, ballpark estimate. By a few days later, it had become very sore, congested and bloody (clumps, drips, but no gushing bleeds). I was cleared for the third chemo anyway on 5/14 with this even though I was totally panicked, and got through chemo just fine. It continued about the same after chemo but has been gradually improving with the steaming, moisturizing, salining, vaporizing. It has particularly bugged me at night when my nose gets very congested and I have to breathe through my mouth. I use Halls to try to bring down the congestion and it helps. Last night I was able to sleep pretty well without being up half the night with a stuffed up, congested, runny nose. I do tend to wake up with a little caked blood in the nostrils.
I just did my nose (steam, a inspection with the qtips and moisturizing with the NeilMed) and it looks better than it has in about two weeks. So it has taken me that long to get to this point.
Allie
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Y’all are giving some great tips on the nosebleeds! During my first round of chemo and Herceptin, my nose bled a bit, which is very unusual for me. Unfortunately, my 2nd round of chemo has been postponed because I developed an infection where my surgeon removed lymph nodes. This infection has caused me two trips to the ER, and two aspirations with a third scheduled for this week. During the last aspiration, they sedated me and put those oxygen tubes up my nose. I woke up with the worst runny nose/congestion EVER! I’m definitely taking notes from y’all on how to fix this! Also, praying the next aspiration goes smoother so that I can get back on the chemo train. Ready to be done with all of this!
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Les,
the tampon up the wrestler’s nose was a new one. A brilliant idea I never would have thought of by myself. I totally would have used that hack when my daughter was little. As a toddler, she’d get several nosebleeds every week, sometimes every day.
I want to be a fly on the wall watching the trainer at Kris’ son’s school tell a teenage boy, “Son, I want you to .... put this up your nose ... to stop this nosebleed.”
“you want me to do WHAT?!” LOL 😆
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j
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Hog co-pilot
What were the symptoms of your lymph node infection? I have a swollen area on my armpit and it’s somewhat painful. Had a clip placed on my lymph node from a previous biopsy that was done at another facility. I have my second infusion on Thursday and will have to discuss this with my DR.
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J- hilarious! They are usually right in the middle of a match when it happens, so they are just trying to get back on the mat. They usually don't care.
Today - Week 1 fatigue is kicking my butt, big time.
Kris
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J, you are hilarious!! That was the laugh I needed!!!
Claud, my main symptom was fever. The area around the incision was also red, swollen, and warm to the touch. I sent you a PM with a bit more detailed information.
Kris, I’m sorry about the fatigue. I’m scheduled to get back on the chemo train on Thursday, so by this weekend, I’ll be joining in on the fatigue party. But, after this coming infusion, I should be halfway done- Lord willing!!!
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Les — we'll be holding hands on Thursday. My second full session. 🙏 all goes smoothly for us. Anyone else scheduled for Thursday?
It's an all day affair — labs, docs, infusions of my five goodie bags — steroids — Benadryl — Famotine — Herceptin — Taxol. Since Cvirus has my infusion center providing next to nothing, last time I looked like I was moving in for a week. Grateful I wasn't at the airport. TSA wouldn't have let me leave the ice chest and soft side cooler with the infusion center's receptionist while I did labs, X-rays, and saw the doctors.
Everything is on a different floor at the cancer center. Only four people allowed in an elevator at one time. One of my doctors, a woman doing post graduate fellowship training, rode in the same elevator. We exchanged small talk. With our masks, we didn't recognize the other until she walked into my exam room. LOL
I was so tired last time, I slept for about 30 minutes during Taxol. Nurses teased me. Never had anyone not get a blanket or sleep so soundly with hands/feet in ice. I was coming down from the adrenaline of fear and no sleep the night before. Sure made the time go more quickly.
I met someone in here who developed diabetes during chemo so I've been fasting when they draw the blood to get a good glucose level. By the time I'm reunited with my food and beverage, I'm starving. Might put a wee snack in my purse this time.
Tomorrow afternoon I have the introductory teleconference with the Palliative Care and Pain Management oncologist. Was given the choice of coming in person or doing teleconference. Nice to have a choice but we're not going to be hugging, so I might as well stay home. Cannot imagine what there will be to talk about for an hour and a half. Will let y'all know
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j
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J,
I will be going in on Thursday too if I pass precheck. I'll be thinking of you and Les! I enjoyed reading your thoughts. Les, thank you for sharing SC Laurie's words. Both are inspiring.
My best wishes,
Allie
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Feels great to get back in here, read up on all of the latest replies, and say "hello" to everyone again.
Quick note - 2nd TC infusion on 5/21 went extremely well. What a difference from the first time with 2 back to back ER visits. I attribute the improvement to 1) lower dose of neulasta; 2) consistent use of Claritin for bone pain from the neulasta; 3) switch from Zofran to Kytril for anti-nausea (no longer have headache or constipation now that I'm on Kytril). I still came down with a high fever (102-103) throughout the night on day 3 post-chemo, but just like last time, it resolved by the morning and (unlike last time), it never returned.
Allie, J, Les, Claud - good luck with your infusions this Thursday. I'll be thinking of all of you and praying for minimal/no side effects! Go kick some cancer a** this week!
J - I hope you get some sound advice from the palliative care/pain management team. The palliative docs that I have met at my work have been some of the most generous in terms of their time and caring spirit. I have a feeling that you'll be in good hands. Also, I adopted rainbows to see me through this journey as well (both my friend and I were wearing rainbow t-shirts the day I was diagnosed). Love the symbolism!
Kris - I'm so sorry about the fatigue. Rest, hydrate, and take comfort in the fact that it usually gets better before the next round. This helps me...especially when the days seem so long immediately after chemo. PS: I am woefully behind re: our keto sidebar. My apologies.
Robin - a big welcome to our little corner of the web! How are things going for you this week? Keep us posted as you feel up for it.
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it’s been a while since I have posted. The weeks seem to fly by when the infusions are weekly. It feels like being on a constant rollercoaster.
Need some help... I am on a weekly chemo regime of Taxol and Carboplatin. Every third week I get herceptin and perjeta. Every week in the chemo session, I get premeds...the usual cocktail of steroids, nexium, antihistamine, anti nausea. I started of with 20mg of dexamethasone. After a few weeks started developing severe acne on my face. The oncologist attributed the acne to the steroid and advised that the dose should be tapered. Slowly over the weeks, the dose was tapered. Last 2 sessions I received 4mg of steroids. My skin is a lot better. Yesterday in my eighth session, out of 17 sessions, I received no steroids. Last night and today I’m feeling exceptionally tired and fatigued. Has anyone ever had the steroids stopped midway during the sessions? Also my. Neutrophil count was low and liver functions a bit high. Need to self inject myself with Neopogen. Anyone else is having to do this?
Zarin
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Zarin,
If I may add two cents.. steroid is a necessary evil but also comes with a lot of side effects. I hated it. Extreme fatigue is partly steroid withdrawal and cumulative effects from chemo. I used to sleep 20hrs a day which probably helped me a lot. My glucose was 265 at the highest.
Liver counts again chemo is mainly responsible. ALK was 137 at the highest. If you could tolerate, try beet juice.
The thing is chemo messes up everything in human body. You just have to let it take its course. I am 35 months post final chemo. My blood counts are still higher than pre chemo.
Take care.
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Hi Zarin, i am not on your regimen but I do get steroids and anti-nausea meds right before chemo. I do give myself a Neulasta injection one day after chemo. I continue the steroids for three days after chemo.
Allie
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first chemo yesterday and went well. Had to have hydrocortisone for not common side effect of back pain but that helped and pain was gone in 10 min so we continued.
I’m an RN in interventional radiology do except for knowing about ports I’m learning as I go and here. Enjoyed the rainbow from byhisgracetwice and knowing people are thinking about me.
im actually working 6 hrs today before neulasta shot and hydrating like crazy.Thx everyone 🦩🦩
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