My Husband, My Life, My Love, My Family, My Cancer
Comments
-
I remembered today that I can go out and get a cake whenever I emotionally need one... so I did! Happy berry mousse cake to everyone, let me offer you a slice
3 -
Wow sf-cakes. That looks yummy!
0 -
That looks delicious, @sf-cakes! 🍰
1 -
sf-cakes Put the coffee on I'm on my way😋 Wow beautiful cake, enjoy!!
0 -
whoah, sfcakes - username checks out! Enjoy every bite. :)
0 -
sf-cakes
0 -
Stupid site just deleted my post!
As I was saying, sf-cakes, I hope it tastes as wonderful as it looks. Thanks for reminding me that there is still much to enjoy and I don't need anyone's permission!
2 -
Sunshine <Waving hi to everyone. I see you, even if I don't mention you by name.>
I love this; it's so perfectly accurate!
Mel - First, so you know my heart is in the right place. predictive text on my phone kills me. I can't tell you how many times it's come up with ridiculous words instead of what I typed/swyped. I had to do a double-take and got a giggle out of your predictive text replacing migraines with migrants, so you got "hope the migrants leave you alone". Hehe. It just tickled me.
Emac, sorry the Piqray is messing with your blood sugar. Were you diabetic before, or is it all due to the Piqray.
Sunshine - I'm glad you had a better night. There's a lady in Monday's Zoom that had to drop Ibrance awhile back due to it causing lung issues.
I had to drive into Fort Worth for DH's post-op appt (he's doing great!). I grew up and learned to drive near a major city, but I dread it every time now. It really wasn't too bad because we arrived after morning rush hour and left before evening rush hour...but I'm glad I won't have to do it again anytime soon!
2 -
@aoibheann Tosymra is the nasal spray the MO recommended. It's 10 mg, do not pretest it as it's a one shot deal. I used it yesterday and had great success. Today I screwed up (only 2nd day) and didn't press the plastic hard enough so a small amount discharged and caught me by surprise. I would up swallowing it so didn't get the full benefit. Still my head didn't have as heavy a pressure in it. My chin and face seem better, not difference in the fullness of the ears and tinnitus. It comes 6 to pack and I hope it works for you as I believe it will for me. I do have MS, so this may well be MS related. But it could also be inflammatory symptoms from cancer.
0 -
Seeq - I wasn't diabetic, my sugars have always been normal. This is a well known side effect of Piqray. I am just now starting to try and find the right regimen with my PCP to manage them.
Sunshine99- I'm sorry to hear you are still coughing. Has your MO or PCP done any imaging? I was thinking along the lines of a CT or CTA just to err on the side of caution?
Irishlove - I am so thrilled you are getting a little bit of relief. You definitely deserve it!
I left the RO's appointment really encouraged today. He's very nice and seems very confident in his treatment plan. He explained my brain mets are tiny and agrees with the report that there is likely only 3 not 4. The 4th he felt strongly was part of the brain vasculature. He feels I only need one treatment. I was happy about that! He mentioned how MBC patients are living longer and longer these days and I reminded him about the LC. He told me that in his experience even LC patients that have a primary breast cancer are faring better and living longer. I don't have any glorious delusions that it will be 10-15 years but it certainly sounded better than the doom and gloom prognosis I was given. My Taxol treatment went well and I always get the 10mg Dexamethasone with it so I'm up later trying to wind myself down. All in all I felt today was long and tiring but ultimately a good day. Hugs to the group and may we all have better days soon❤️
Bonus that I got a huge basket of tomatoes from the garden today. I sent some home with my folks to share with their neighbors! I've never made them but might just have to try making some fried green tomatoes.
3 -
Hi everyone. I did a quick comment to the new poster regarding nasal spray. I wanted to come back and wave to everyone and say thank your for providing such a loving environment. Mel, you rock girl. Good to see stable scans and adventuresome driving and oh that cake.
@emac877 Just a bit of a situation while I was hospitalized in July and took 3 doses of IV solumedrol. My glucose went way up, has never been high. Someone posted on my chart that I am a diabetic. I quickly told the GP that's not true and I declined insulin. I spoke with the MO and he asked how high, it was 182. He doesn't consider it a problem until it reaches 400. Of course that's his opinion and others may disagree. It is now 79! I saw Piqray carried that potential side effect. I hope you can get things under control and this is a temp side effect.
It was brutally hot, 101 heat index 112, no rain. A bobcat moved into the neighborhood, caught on a cam by my neighbor. I can't sleep cause I can't get Booty the cat to come in. She was abandoned by prior owner and likes it outside. She comes in when it storms and hides under my bed, but will not use a litter pan. I just don't know what to do as she cries to get out. She's about 10. DH gonna carry protection tomorrow when he walks the girls. They smell that bobcot and Minnie siezes up and Pigeon barks. They'll have to find a new routine and stay away. I worry about rabies due to this heat, too.
Saw MO and had Zometa. News: Man getting infusion next to me for lung cancer was unable to secure his chemo for 5 weeks. They tried throughout the state. Sad and scary. Neighbor getting chemo for lymphoma for her 16 year old dog. I don't know the stats on that, but I do know I had read that particular chemo was in short supply for humans. It's a tiny dog, so???
My good news is Pet scan showed major improvement. That skull mets, is not mets. It's my frigging German head that was dented in years ago. It showed on MRI and not on Pet and he said I am responding very well to Ibrance, Zometa and FLurvescent and NO RADIATION!!!! He did recommend Rituxan for this intercranial pressure, facial problem and what is considered, a complicated migraine. I'm holding out for NEURO and hope he recommends Tecfidera, which carries anti-cancer fighting components and not as adverse side effects. And so I got down on my knees and thanked the LORD for giving me more years. Originally it was 6 months when diagnosed. I am blessed and don't have to cry when I look at that sweet 9 year old GD. May you all have a wonderful, peaceful evening.
2 -
Irishlove and emac
So glad you've both had positive news! That's what keeps us going 😊
1 -
dumb auto correct. Apologize sincerely! Good grief!
the pic of Theo was my dd. I am way older than that lol. I wish1 -
1 -
Emac and Irish Love waking up to positive news for you both, let's keep it going!
Mel Loving the pics, keep them coming.
dodgersgirl Thinking of you❤️
0 -
Good Morning my lovely lady girls! Happy Friday, peaceful & struggle free Friday, hopefully for many of you. Yesterday I was feeling really tired and in a do nothing mood. I’m sitting here with my coffee and feel the same today. I’ve been taking my Verzenio regularly, since my scans last week. I always skip a dose if I have to be up by the hospital for Scans, it’s an hour 15 minute drive so I skip dose the night before and in the morning also and take Imodium. Then when the day is done I go back on my normal dosage. But then it is. All side effect Gi time and I’m in the bathroom at least 5 times throughout the day. But for me the worst thing is the sheer exhaustion; overwhelming tiredness and balance issues. So then I just do nothing all day.🥱😴and all I want to do is sleep but, but I don’t allow myself to do that. I hate that I don’t feel like being out and doing things, and the question why I am doing this. Yet there is so much I want to do. My Paintings need to be finished so they can go to the gallery, I want to get at least one beach day, or walk my 2 pugs, just simple things I’ve always loved doing but don’t feel up to doing. And then there’s the sex. I want to want to get back into our regular sex.
So there is my Frumpy Friday F’d up life. But then, you’ve all been there feeling like this I know. I Love you all.
@micmel post some Theo stories.
@aoibheann Welcome. 💗💕🩵🤗It’s a beautiful group here. Hard to keep up, very busy forum. I’m sorry about your terrible headaches. I hate them. I get them with my cervicle stenosis, and until my neurologist comes back from vacation in August to give me the injection, the headaches remain at night and when I wake up.
@bellelove70 Hi, don’t lurk, trust Technical to get you back. They are wonderful. They helped me so much getting back on with my original name. They were so kind and understanding while we were emailing back and forth.🩵
@irishlove @mara51506 @sunshine99 @seeq @tanya_djamila @weninwi @cookie54 @candy-678 @intolight @emac877 Love and hugs to all of you and those I’ve missed here. I feel too wiped out to type more…….Oh and especially MUCH LOVE and Prayers to you @dodgersgirl 💙💗virtual hugs sweet girl (((((((♥️)))))))
2 -
@shanagirl What dosage of Verzenio are you on? I started at 150mg and reduced to 100mg. It is more tolerable and I have good results on it still. I had the extreme fatigue and weakness at 150 but minimal at 100. I still get D but it too is less. I don't have the drive you have but I do skip a dose occasionally if my D is too much for me.
@micmel Love the Theo pictures!
0 -
Seeq, I got a laugh (actually, I almost choked on my coffee) on the “migrants” comment. I must have missed that on mel’s post.
Emac, I do get regular scans and had another one on July 9 when I ended up in urgent care. The CT did show new areas of ground glass opacities. My next scans are scheduled for the end of the month.
The tomatoes sound wonderful.
Irish, yuck with the heat! The bobcat sounds scary. This med shortage is unbelievable.
Dodgersgirl, no need to reply. Like others, I’m thinking of you this morning.
Waving hi to everyone. Not a good night for sleep last night, so pardon me if I fall asleep in the corner of the living room. Wake me up if I start to snore or drool.
2 -
bellelove, I agree that you don't need to lurk, we know who you are. Hopefully they can restore your original screen name. If worst came to worst, maybe you could just put your original screen name at the bottom.
I am happy, was approved and will get stuff to get me started on Paratransit, means they will pick me up at the front door. Going to cross fingers that it starts before wednesday as I have Herceptin. Then I can take the bus to the mall and have them drop me off. I love it.
2 -
SFcakes- yum the cake looks and sounds delicious
Irishlove and Emac- finally good news
Mel- love the pictures of Theo!
Mara- glad you got approval for the Paratransit. What a difference that will be for you
Dodgersgirl- thinking
0 -
ladies I’m worn out! Its like having a baby in the house. He’s super snuggly and is full of puppy breath kisses. Potty training is difficult but my DH has been wonderful with me. (Sounds like I’m being potty trained) His little bark and play is so funny. His little marble eyes suck you in.
Im sending love to you ladies. It’s a busy busy time. But you’re all in my heart. And yes Dodgers you for sure….1 -
great news Mara, paratransit! So helpful for you. I’m hoping it will make traveling safer for you. Sending hugs.
0 -
Hi everyone. Sounds like all in all some good news and a few bumps, too. In bed sick from Zometa? I didn't vomit but it's close. Not nice stabbing pain in the stomach for hours. No fever, minor headache. Stuck to applesauce and ginger ale. I stopped all meds today with exception of zofran and Ibrance. Just need a break. I know so many suffer from the big D with meds, I'm opposite. Never can say I have D, always constipated, courtesy of years of MS.
A bit of rain, but would you believe its' 85 degrees at 10 p.m.? Booty ran in the door with first thunder strike. Otherwise it's a Quiet night, nothing on TV. Wanted to point out I ordered Ibrance from Pifzer and there's a warning on box about temp controls. Suppose to be kept under 77 degrees but allowed up to 86 for transportation. I imagine the back of those delivery trucks are over 100 degrees and the meds are in that truck all day. Can't help but wonder if it effects the efficacy of the drug? The heat index today was once again 112. I had asked to sign for the meds, but given up as I have so many doctor appts and don't want to miss delivery. What's your take on the heat and how it could affect the pills??
Laurel
0 -
SF-Cakes- the cake is beautiful. How nice that you are treating yourself.
Irishlove- yay for good scan results!
Shanagirl- I'm in the dose reduction camp, too. Going from 150 to 100 on the Verzenio greatly improved my D, but also my fatigue, and let some of my thinning hair grow back. Funny note on that - apparently when my hair thinned out so much, it was all the brown hair that let go. The gray hair was hanging on for dear life! I didn't realize it until my hair started coming back a bit and there was more brown.
Emac - so glad you got encouragement from your RO. it's nice to get that different perspective - especially when it's a more positive outlook. In thought the Piqray might be responsible, but I was just checking. My MO mentioned Piqray as a possibility, depending on biopsy results...when we get to that point.
Mel - I'm so glad Theo is captivating you, even if he is wearing you out. ;)
Mara - hurray for the paratransit progress! I, for one, will be a little less worried about you.
Woohoo! - it looks like I should have new flooring to replace the carpet in my house by next weekend. The old carpet is just...bad. We're still getting quotes, but at least one person is reasonable, and can do it this week.
Still waiting for our triple digit temps to break. ::sigh::
Dodgersgirl- thinking of you. Hoping you have someone to help you navigate/advocate with Medicare. Hugs.
2 -
Mel, having the cute little doggo is a good type of tired I am sure, glad you are enjoying the little guy.
seeq, enjoy your new flooring. When my hair is long enough, it is quite dark. I keep it clipped as bald on top is not the look I am going for.
I am looking forward to paratransit, being the detail person, I looked up everything, trying to get the lay of the land. From what I am gathering, I call 3 days before, preferably early morning to make sure I get a seat since it is ride sharing. My thought is when at the hospital, give myself 4 hours if just getting Herceptin, when done, can walk around hospital til it arrives or look into phoning earlier. Glad to have this option.
Just going to do normal house chores and surveys, if really bored, pull washer out of tub and wash blankets, been a few weeks since I did that. Already reset my internet again. It craps out but I do think it is because it has to be plugged into a shared plug. My apartment does not have many dedicated outlets. Breaking down more boxes, cannot fit them all in the recycle box so using bag next week.
Foodwise, still eating through freezer to make room, buying shelf stable food in future. I am not going to buy an extra freezer, just not buy so many frozen things. Breakfast will be a chicken pot pie, add some beans ground with beef and wheat bran so they are the same texture. I found cans of corn so may add those and turn it into a couple of meals. We will see. I am also hankering for a Mcdonalds breakfast. I have not spent very much on groceries so far so it would not hurt. Perhaps save the meat pie idea for later. Who knows.
1 -
Joining emac and irishlove with good scan news. My MO says my lungs and liver look mostly stable despite my two months off treatment. Can't start the Elacestrant until financial aid gets lined up. Even though my insurance approved it, there's still a $3000 a month copay.
1 -
Saw my oncologist yesterday. Scans showed shrinking or stable mets and tumor markers decreasing! I was worried about one lung spot but she said that it’s ok. So in celebration, my partner and I booked a trip to Antarctica!
5 -
@AJ Wow, that is amazing news. And Antartica!!! Can't wait to hear how that goes. More positive news for the room. @emac877 @irishlove and @ninetwelve all with good news. It is about time!
1 -
Mara, that’s awesome news about the Paratransit!
Mel, I never had to potty train our pups, so I can’t imagine. It sounds like the puppy breath makes up for it, though.
Irish, I’m sorry you’re in bed. The first Zometa infusion was the worst, with symptoms like you are describing. The second one was better and after that, it was a non-event. I never vomited but felt like I wanted to. Had a fever, too. I hope your future infusions are easier. Someone suggested taking a Cl, Caritin before the infusion. I don’t know if it helped but it might be worth a try.
I did have one delivery of Ibrance where UPS left it on the front steps in the full sun. REALLY? I’m supposed to sign for it. Oh well. I did have it delivered to my local CVS a few times, but that was a fiasco, too. “We have it – no, we don’t have it.” They did have it, but it took a hour standing in the pharmacy while they called “someone” to track it down.
Sleep is still elusive. How is it that I can be so friggen’ sleepy during the day and then wide awake at night??? I’m about to take up drinking again! I feel like Bill Murray in “What About Bob?” when he gets on the bus and says to another passenger, “Hi, I’m Bob. Would you knock me out, please? Just hit me in the face.” Do you think it would help?
Mara, more than once, I’ve found food in the freezer that I had totally forgotten about. Sometimes it’s a good surprise but sometimes it’s like, “What in the world???”
Ninetwelve, I’m happy for your good news. I have scans at the end of this month. I’ve been off Ibrance since July 9 (with one pill on the 26th) and am wondering what my scans will show. I know there is something going on with my lungs…
Love to all. We’re going to go to a birthday party this afternoon. It’s “La Fiesta de los Tres Vecinos” or The Party for the Three Old Guys.” It’s right across the street and it’s become an annual event hosted by our neighbors. Taco truck and margaritas and the whole nine yards. No food for me but I can’t wait to hang out with our wonderful neighbors.
More later,
Carol
3 -
Carol and Irish, I have been on Zometa for seven years now. I agree it gets better. It is a non-event for me now—I just get a little achey for a couple of days afterwards but no big deal. I do suggest Claritan the day before and day of. Not sure why it works but it does. I don't need it anymore.
1
