2017 Diagnosed-- A Place To Share "Whats Next"
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Thank you everybody for your kind words of encouragement and support.
Met with new MO today. What a class act — his recommendation is the real Herceptin and wants me to consider 12 rounds of Taxol. He also wants to get a palliative oncologist on our team who can help with pain management as needed.
When first diagnosed three years ago I declined lymph node removal, chemo, hormone therapy, and chest radiation. The reason was no one could figure out what was making my breathing so wretched and why my right main pulmonary artery was dilated. Two years later the breathing turned out to be an allergic reaction to a blood pressure medicine. Switched meds — breathing problem stopped within days. Pulmonary artery problem still a mystery and now the right, left, and main trunk all are three times larger than they were. Only a couple more centimeters and they will burst or leak. Based on past history, that will happened in two, maybe three years. There is no surgical fix.
I asked him if he would be surprised if I still was alive in three years if I only did Herceptin to treat the cancer. He replied “good question,” and thought before he spoke. Would need to do updated scans to see if had spread to more than lumbar spine — chances better if Taxol added to the Herceptin ... thought I might get four to six years, maybe more. Said his crystal ball is cloudy. 🙂
I have some thinking to do.
j
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ByHisGRace...hugging you, from a safe distance.
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oh, byHisGrace, I hate it that you have to make such decisions. So hard
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ByHisGraceTwice - hugs sent to you. Wish I had a magic wand
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runor, moth, DodgersGirl — thank you all. My eyes puddled after I read your loving comments. This has been an emotionally heavy week. It was the 20th anniversary of my Mom's death. We were exceptionally close ... talked every day. This decision most certainly is something I would have talked to her about. Y'all lightened the weight of my decision by being there for me.
moth — how are you doing? You had some tough news lately ... any updates or treatment changes?
j
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I had my chemo cancelled on Thursday due to fever & I've started antibiotics for *another* UTI. I keep getting fevers & this time they were spiking high. If it weren't for covid and the fact that dd is an RN and lives with us & we have the equipment for a full set of vitals, I would have been hospitalized for sure. Tomorrow I'm going to the lab and they're drawing blood for a sepsis workup plus checking my liver enzymes. The plan is still for back to chemo & immunotherapy on Thursday but it will all depend on a bunch of blood work this week & how I respond to the oral antibiotics. I might end up needing to get IV antibiotics. I really don't want to be admitted to hospital so I hope it doesn't come to that!
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moth- hope you won’t need IV antibiotics or a hospital stay.
Is the UTI a side effect from your clinical trial?
Sending you wishes for a speedy recovery from the UTI so your tx can kick cancer’s butt.
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Had my monthly MO appointment today. Office is still on lock down mode but next week, office will return to full appointment schedules.
My white and red blood counts are lower than last month. Platelets are up! ANC is above 1 so I can start Ibrance cycle 4 soon with a dose reduction due to side effects.
Scans are being scheduled for May. Supposed to be a repeat of Dec/Jan with 3 or so different CT scans plus a nuclear bone scan. Not looking forward to that but scans every 3 months are part of my new norm.
Runor— in keeping with your previous chin hair story wanted to tell you I pulled out a magnifying mirror to check for stragglers before leaving for my appointment. No Tarzan vines on my chin!!
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Dodgersgirl — wish your white and red blood cells would behave themselves ... or should I say wish your bone marrow would get off its duff and do all the work it’s supposed to. It doesn’t need to chill just because everyone else is chilling while sheltering in place.
Laughed at your and runor’s chinny chin chin hairs. Similar thing several years ago. Convinced myself (so I didn’t have to hide at home forever from embarrassment) no one could have seen it because I’m very short and the two inch hair was under my chin. LOL
Laughing at the irony — I won’t have to tweeze it much longer. I won’t have any hair in a couple weeks. I’ve decided to take the new MO’s recommendation. Next Thursday I’ll do a “real Herceptin” and a few days after the first of 12 Taxol.
I was surprised at wig prices. Whew — Have you bought any or scarves? Recommendation for an online site?
Like you it’s time for my scans. CT of chest, abdomen, pelvis and diagnostic mammogram. Yuck yuck yuck — I’m allergic to the CT contrast. I have to pre-medicate with 150 mg of prednisone plus Benadryl and Pepcid.
Hope only good news comes from yours and your ANC and platelets stay up during your next round of iBrance.
j
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ByHisGraceTwice— I, too, have a mammogram scheduled for May (had to move it to May due to Covid-19 lock downs)
You mentioned wigs. Have you visited a local American Cancer Society? They have free wigs for cancer patients. I picked out one in 2017 while doing Taxol.
Have you done Taxol before?
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DodgersGirl — I'll call American Cancer Society. Didn't think about them; great suggestion, thank you. All local wig shops are closed because of the Cvirus.
My hair is thick and grows super fast. Since chemo goes after rapidly reproducing cells, I anticipate losing my hair quickly. My scalp is not pretty. I have ugly scars and indentations from a car crash when I was a teenager. God was good to me, almost all the scars are covered by my hair. I do have a four inch one on my neck which no one ever notices now because it faded with time. I'm hoping some on my scalp have faded too. If not, I'll be the Bride of Frankenstein for Halloween. 😱
No, haven't done Taxol before. The disaster Kanjinti infusion on April 1 was my first infusion of anything. I haven't done chemo by pill, hormone therapy, or AI either.
All tips and tricks (and warnings) are welcome.
j
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ByHisGraceTwice—. Taxol is called chemo light by many on BCO due to the ease of side effects. That was not the case for me. So, I will share my experiences but be mindful that you may not have the same SE. I had my infusions on Wednesdays. Pre-meds in IV included a steroid and Benadryl. Benadryl made me drowsy during Infusions. Steroids kept me up all Wednesday night with a steroid crash late Thursday afternoon. I learned to use that steroid high as a time to get things done around the house. By Friday night I had bone pain that seemed to jump from knees to hips to back, lasting at each spot for a couple of minutes. This pattern lasted all weekend. At first sign of the bone pain, I took 2 Aleve every so many hours. Aleve helped a lot. During Taxol, I iced my hands and feet. I started the icing process 15 mobs before the Taxol drip, during the Taxol, and 15 mins after Taxol. Some say this icing process helps stop neuropathy. I iced to try to not lose my nails. They became very sore on Taxol. Oh, and on Thursdays my face would get really red from the steroids.
Reference hair, some people say it starts to grow back while on Taxol. That was not my experience I had already lost my hair from A/C chemo which I had before 12 weeks of weekly Taxol. And remained bald until after Taxol Chin hairs were first to grow back. So unfair!!
For me, I was not nauseous from Taxol just had to deal with the bone pain and nails hurting. Hopefully, you will fall into the category of people with very few side effects
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DodgersGirl— thank you for sharing your Taxol experiences. I hope you don't have permanent issues from those side effects. Neuropathy is a big worry for me. Did icing your hands/feet work?
A cousin cannot get anything out of the freezer barehanded. Her skin will stick to the frozen item. I don't know which chemo she had. It was for colon cancer ten years ago. I need to ask her.
If there’s a downside or an unusual side effect, I’m the one to get it. Example, IVP dye for a kidney test. Routine for everyone — not me, I passed out for 30 minutes and went into respiratory failure.
Chemo lite is what the new MO called it, but did quickly followed with it does have potential for significant side effects. Then asked what I thought about my hair. I wasn’t concerned: “It will grow back and it grows fast.”
My hair sometimes grows almost an inch in a month. I didn't know there's more to it than just falling off my head and growing back. I’m worried now it won’t be the same when it grows back AND losing eyelashes, eyebrows, and nose hairs.
If Herceptin makes runny noses and there’s no hair to slow it down from the Taxol, I’ll need a hanky or box of Kleenex on a string tied to my sleeve like a toddler. I knew losing nails was a Red Devil possible side effect but if I lose nails on Taxol it will take years, literally, to grow back. My body puts all effort into hair growth, I can keep a pedicure for five months. That’s how slowly my toenails grow. Fingernails not much faster. How long after Taxol were your nails sore?
The bone pain you described ... sounds like something I’m likely to have. I get a mild version of that now in places no mets have been found ... my ankles, upper arms, rib cage, and femurs. Getting more severe in mid spine. The area around the confirmed mets in lumbar spine are better since radiation.
Do you think your bone pain was connected to bone mets not diagnosed at the time? Probably not because it was what, two years before your bone metastasis was dx.
I called the American Cancer Society expecting a recording to tell me if the local office was closed. Call was routed to a national 24/7 and was answered by a real person. Very helpful. ACS will email a voucher. They directed me to the local location to talk to a real person during business hours to assist with using the voucher.
The voucher stated “Resource Center is open to the community. Free head coverings, wigs, scarfs, hats, blankets, and comfort and port pillows are available to cancer patients only.“
800-227-2345 — American Cancer Society also has library of info which they will email, can connect you with support and education people.. All in all seems to be an excellent resource. Thank you for this great suggestion.
j
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ByHisGraceTwice—. Ref bone pain on Taxol: I do not believe it was from undiagnosed bone mets. This weird roaming pain is a known SE from Taxol. It’s just not one that most people get.
You mentioned runny nose. That reminded me of another SE I did have. Taxol dried out my sinuses. And yet still had a drippy nose. I carried tissues with me at all times. Without nose hair, those drips happened when my head moved in a certain position. Now the drying of the inside of my sinuses was uncomfortable. I ended up using Ayr Gel which was put on a cotton swab and run inside each nostril. Followed this with a saline spray. This soothes the dryness inside my nose and minimized bloody noses.
Reference icing. I think it did work to help me keep my nails. Hubby helped me with icing for the first 10 Taxol Infusions. He had major surgery and missed my last 2 infusions so icing all by myself was harder to do and I wasn’t as good at keeping fingers iced. My nails hurt after those 2 Infusions. I did not lose any nails. They were tender for a few months after Taxol. Nails are normal now.
Oh- one thing that I was not expecting from losing my hair is that I needed to wear something on my head while indoors because air conditioning made me so cold. I also bought a soft beanie to sleep in.
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DodgersGirl— great tips! Thank you.
We lose so much heat through our heads. Had not thought about something on my head inside or while sleeping ... that made me think, my scalp probably will be tender. I wear hats often to protect my face from the sun but several wide brimmed ones are straw. I’ll need to wear something under my straw hats, won’t I?
I’ll look for the Ayr Gel and get extra saline mist. I’ll need to keep my sinsus and inside nose moist. I have a large retention cyst in a sinus under my eye which would have been removed but it isn’t high priority in today’s Cvirus world.
WoW y’all had a double whammy. You still doing chemo and your DH having major surgery. Hope he fully is recovered now.
I misunderstood your treatment signature that you were doing the AC followed by T now. That’s what was recommended for me in 2017. I declined ACT and Tamoxifen then because other medical issues at that time made the risk to my heart and lungs greater than the possible benefit. No regrets.
I need to go back and read this thread again from the beginning. I remember you’re doing iBrance. Are you doing other treatments also?
j
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ByHisGraceTwice— my current treatment plan is Ibrance and Letrozole. Ibrance Cycle is one pill a day for 21 days. Then a 7 day break before next cycle. Letrozole is taken every day. Then monthly I receive an XGEVA shot.
I will be on Ibrance until it stops working for me.
Ref sleeping with a soft beanie: I had been advised that sleeping with a soft beanie would keep stubble hairs from being iratated by my pillow case. I didn’t really have that issue but found my head got cold at night. My hair had been waist length before chemo. I was born with lots of hair. So being bald was a learning experience, for sur
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ByHiGrace - I had the Oncologist from Hell. He kept telling me I would have NO side effects. Finally after the 4th visit of him trying to talk me into Chemo - I asked "Why do you think I won't have any SE's?" He answered "Because I'm that good" I walked out.
DogersGirl - I did go get my port flushed at 7:40am when no others were there. I took my own pen, wore a mask and gloves, and took the stairs. Still scared me.
hope everyone is hanging in......0 -
rljes — 🤬 — sorry you had one of those too. So proud you walked out and kept walking!
DodgersGirl — was thinking about your waist length hair. I’m sure it was gorgeous.
Found out I won’t be having a mammogram until July, one year from the last one. My OBS’s PA said some guideline changed this year from six months to one year. The breasts are scanned in the chest CT I’m getting tomorrow, so I’m not concerned.
Extra prayers please for me at 1 CDT. I’m deathly allergic to the CT contrast. 🙏 the pre-meds work again. Time before last my BP went sky high and took forever to come down, but last time all was good.
j
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rljes— my plan was to ask you how your port flush went today. Thanks for letting us know you got thru it.
Sounds like you were prepared! Did you find the facility had taken steps due to Covid?
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ByHisGraceTwice— in your pocket for tomorrow’s CT. Prayers that they take good care of you so you avoid any issues from the contrast.
How is your port? Will they use that for the contrast?
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GoKale4320– have you started up on supplements for osteoporosis yet? If so, did you have any side effects?
I think I am going to slowly restart my supplements which I haven’t taken since my week in the hospital in Feb.
Hope you are doing well.
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Scottie719— Checking in. Have you been able to get your hair cut during the Covid lockdowns?
I feel lucky that my goal is to grow out my hair again so missing cuts is ok for me. But I know having salons shut down is problematic for others.
Oh, I have wanted to tell you that after reading one of your posts, I have been high-fiving my kitchen cabinets try to keep mastectomy side stretched out and I smile, recalling your post.
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DodgersGirl — thanks for thinking of me. I'll be up all night. I take my first 50 mg of prednisone at midnight. The protocol is 13 hours, 7 hours, and 1 hour before the CTs
The port is doing terrific. Only minor discomfort if I forget and lift something too heavy with my right arm. It must be my imagination but it seems I sometimes can feel the tubing on the left side where it goes into my superior vena cava.
I think they'll use the port for the contrast but I don't know about the blood draw they do first. They check my kidney function before doing the CTs.
I do all my scans outpatient at the same hospital because the CT machine literally is next to the ER. Just in case we need some extra help. Came close to sending me there the time my BP went up so high (220/125,) but after about two hours it finally went down to normal range and they let me go home.
Did you have to stop the Letrozole when you became so dehydrated and had to go in the hospital?
j
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ByHisGraceTwice—. I can’t sleep tonight so will be up with you!
I did not miss any Letrozole doses while in the hospital. Ibrance was paused that week though.
Ref your port: when I get scanned the first thing they do to me is call down a nurse to access my port ( like they would for chemo) They draw blood, if needed, at that point. Port stays accessed until all scans are over. A CT nurse then flushes my port and removes the access piece.
Changing topics here. How is your aunt and uncle in VA doing this far into the quarantine? Are you able to still send them meals?
DH is feeding my dad. Dad lives a few miles away. Ge is alone and home bound. Dad won’t concider a senior living center so DH feeds him lunch and dinner each day. During this pandemic, I am glad dad is not in a senior center
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DodgersGirl — surprised myself ... after I took my prednisone I did nap for a couple hours.
How kind of you to remember my aunt and uncle. Ordering groceries delivered to them has been impossible. My daughter and I tried for weeks without success after that first limited one I was able to ship from Walmart. Fortunately, they have several sweet neighbors (and one of the neighbor's mom) who regularly bring them prepared meals, groceries, and ... wait for it ... toilet paper. LOL
Much to my surprise they have continued their routines of going out to lunch several times a week with their coupons. They go to the drive up window of Hardee's and take their lunch to the locks of the inter coastal waterway to eat while he watches the boats go by.
Talk about brave. My aunt has handled going blind from macular degeneration with so much class and without complaining or bitterness. She's had a rough life but scored big in the love department. Orphaned at age four (my Mom was two, their brother was eight.) It was in the middle of the depression. She and her brother were shuttled around to many distant relatives. Her brother was killed in WWII. Her only child has mental and physical health problems and lives in a group home. one grandchild lives farther away than I. The mental health issues of the parent — intentionally poisoned the relationship with grandchild and grandma/granddaddy — rarely contacts mother or grandparents — me never. So very sad.
My uncle has tried for years to convince my aunt to move to assisted living. She refuses. I understand her fear. Now almost blind, she has the security of knowing every inch of the home they've lived in for 60 years. We have no other family on that side. He's afraid of what happens to her if he dies first. With my cancer I may not be able to take care of her.
Like your Dad, I'm glad they're in their own home now with the Cvirus. How is your Dad? Being alone must be tough on him.
What a guy your DH is. Do I remember correctly, he's an “essential" and working 12 hour shifts?
I'll let you know how they do the port today. What you describe sounds a good plan. My old MO wouldn't use the port for blood draws. Their philosophy was there's only so many times it can be used. UGH - except for the last fellow, their lab always stuck me at least twice. Imagine what shape my arms/hands would be in if I'd done chemo without a port or was limited to one arm by lymph node removal.
It's a shame I can't fly anywhere. The nonstop flights to my daughter's city on SWAare $69 one way now and the planes are almost empty. I'd love to hop on a plane after the CTs and surprise them for the weekend. I miss my three GrandChuckles (and their mom and dad) so much. Until three years ago they lived 30 minutes away. 😔
j
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ByHisGraceTwice— I fell asleep, too. Yeah!
GrandChuckkes... so cute. Never heard grand children called that.
Your description of your family shows the love you have in your heart for them. Family is everything.
I heard a news story yesterday that said with so many people quarantined, home usage of TP is up 40% which contributes to the shortage. Wonder if places like Disneyland donated their TP when they closed like they donated their food surplus? I still feel blessed when DH comes home from grocery shopping with a package of TP.
Still haven’t found hand sanitizer locally. Hardly find Chlorox wipes or Lysol spray. Flour seems to be back in stock, at least for now but no yeast yet. Meat shortages are coming. Wish I had more freezer space to stock up a little.
I am sure I am not alone in my thoughts during the pandemic with a sense of sadness that my days are limited due to MBC and I can’t risk traveling due to pandemic. This could be how I finish out my story, stuck at home. When I get down thinking about this, I remind myself that we are all home missing friends and family. This would be a good time to bring out home movies and laugh at the fun we gad
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ByHisGraceTwice— 🙏🏻🙏🏻🙏🏻🙏🏻
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Thank you DodgersGirl.
I'm very close with my GrandChuckles. I named them the Chuckles because even befor the first one could talk, we laughed together so much. Three of them, girl 10, girl 8, and boy 6. They each call me something different. Funny story for another day.
Already have CT results — cannot say enough how much I appreciate the people in the hospital's radiology dept — I'm the only outpatient they've done in 10 days and are not scheduling any until May 18. Told them how honored I felt. They teased me. “Of course we going to take care of you, you're a known," comparing me to a frequent flyer, TSA trusted traveler. They were impressed I was off crutches, not even using a cane. They are so sweet.
Cancer's moving fast — multiple new mets in ilium (top of left hip) and L2 and L4. Six weeks since pelvic MRI and these weren't there.
Somethings going on in my hepatobiliary region. Last time mentioned an abnormal issue with pancreas; today same pancreas issue but now mentioned liver and fluid&air in common bile duct. Doesn't say suspicious for mets. I'm concerned because in 2013, pre- IDC, I had a major problem with an obstructed common bile duct. Took ten surgeries to fix, the last one was an open transduodenalspincterotomy. I was in the hospital three weeks after. It's a very big word to say moved the “downspout" from one side of the driveway to the other.
All went well during CTs today. Not even a woozy after the contrast but a first new weird thing. In right forearm and hand (iv was in knuckles of left hand) I felt the warm rushing water sensation that always starts in my throat and goes down my back to my girly parts.
What a difference, the new MO — his nurse called 30 minutes after I faxed him the radiologist's report. He'd looked at the actual images. Spread expected and the treatment plan set to begin next week stays the same.
Didn't use the port. Proximity to the ER they don't want any Cvirus risk or delay to bring down from upstairs a chemo certified person. Not too bad, only two sticks to get the iv, but had a new experience. With my approval the nurse went deep to go after one of my big, but rolling veins inside left elbow. Yowza — OUCH OUCH OUCH. She hit a nerve. My oh my oh my, that thing hurt for several minutes. Bless her heart, she kept apologizing. I felt so bad for her. She's excellent. First time she didn't get me on the first stick.
Flour — Still no yeast anywhere here local or online. Next door neighbor found flour at grocery store this week. We both had been looking since February. LOL, it was 5 lbs of self rising which she didn't notice until she got home. She uses all purpose, so she offered it to me. That morning, I'd said yes to my friend when she called from Costco. She brought me a 25 lb bag of all purpose. I have baking powder and baking soda. Was planning to share with my neighbor. She'd already gone back and bought 5 lbs of all purpose. I went from zero flour to 30 lbs. 😱
Toilet paper - have not needed yet, but our business Costco store has had In stock all along the supersized rolls used in office building bathroom dispensers. That's my back up plan.
Meat — I've been looking at a small upright freezers. I first looked what the cubic feet of my side by side freezer was to compare. The manual defrost aren't too pricy, but me defrosting — not on the top of my to do priority list. 🤪
Asked Nurse. No, I can't spend my stimulus $ to fly to see the GrandChuckles this weekend. Would have to quarantine for 14 days if I did.
Your thoughts of is this how our stories will end is something heavy on my mind. It was a God Thing which brought me to this thread. Our MBC situations parallel so closely. Stay at home and be safe or risk travel? I pondered whether to do the Taxol. Since infusions begin next week, at least three months before I'll get another chance to go anywhere. If I don't, will I ever go anywhere other than a doc ofc or hospital again?
I'll miss all three of the Chuckles' birthdays. Your idea of looking at home movies gave me the idea to try and make a “This is your life CD" for each of them for their birthday gift. I'm not very tech savvy or crafty, but I can copy photos. LOL
Well, I've written a novel. Still wired from the 150 mg of Prednisone, think I go pull up the video of the day the May bd Chuckle was born.
j
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Georgia1— as my flowers start to grow finally, I wondered how your azaleas and Lenten roses are doing? I didn’t know what Lenten roses were so I did some web searching of images. Looks like beautiful flowers. Learned they aren’t really roses. Interesting
My alliums are close to blooming. I used to think they were silly flowers but I now appreciate their uniqueness among other flowers. Hyacinths bloomed and are done for the season. So love the smell from those flowers. Hubby planted sun patiens yesterday. They are my favorite annuals.
Looking forward to being in the yard if it ever warms up. Love soring
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Dodge, I have come to appreciate the chin and moustache coverage provided by a chic and stylish face mask. Sweep on a little mascara and you're good to go. No one knows the hairy mess you have under your mask! Mysterious, smokey eyes and a beard like Santa Claus. Surprise!
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