My Husband, My Life, My Love, My Family, My Cancer
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@bighubs Thank you for your prompt response. I did some research and you are right. Since I have been on two different CDK4/-6 inhibiters which worked for 4 years (femara) and 3 years (faslodex), perhaps I can get some good use out of Orserdu if my MO recommends it.
@mara51506 Good news. I am happy your report was so good.
We are in the beginning of what is supposed to be a huge March storm…the wind is howling and snow should be starting soon. Batten down the hatches as winter is not over yet!
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Sondra F and Mel along with Irish, we are all in pockets with you.
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we are trying everything we can go get through this. The grants are running out and the stress is mounting. Any little bit would be kindly appreciated. I don’t know what else to do.
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Mel, donated to the go fund me. In pockets for you and who you are supporting.
Slept well enough but just got up now which is fine. Last night while heading off to sleep I dreamed of putting a shield around Ukraine that nothing could penetrate. Was very weird but goes along the theme of saving people in real life, movies or characters in video games.
I did a laptop dust on lowest power and all of a sudden it has a bit of whistle, like I blew a fan out of place but it is working so no taking apart, if it bothers me, I will listen to music as a distraction. Lesson learned.
I have laundry to do, yay, an insane amount of recycle to go out and need to get the cat litter into the larger steel box, got an extra large for them. I am liking the litter genie also. Once it is switched over, just clean and disinfect the smaller box and use it to store other things. I also have the food channel on the TV to get paid for ads. I am also washing the hand vacuum after emptying it, soaking in sink with dish soap and will give it a good scrub as well.
I also had a high blood pressure yesterday, did not surprise me too much, been lazy about veggies in my food lately so more beans, lentils and spinach will follow. I would rather eat more of those than give up the food I like. Can just have them with every meal as I did before. Normally my BP is fairly low. Whatever the cause, anxiety for results or just not enough veggies, will listen to my body. Maybe get some veggies delivered as well with a grocery order, I will see about that. They also complained need more vit D. May order chocolate milk to drink a cup a day to supplement as I am not outdoorsy when I put out next grocery order. Oh well gotta stop worrying, the BP taken cou ld have been a one off but decided to also pick up some citrate and vit D to assist in the BP and vit D. I also purchased something called nusalt. Supposed to taste like salt, figure can go 50 50 with actual salt when seasoning as no sodium is not good either. It will all be interesting to watch and taste. Figure that I do not want meds to lower blood pressure but the additions should be helpful.
Not sure what I am having today, may have a veggie filled dish and add a meat pie and add less dry seasoning and stick with lower sodium stuff. Just going to measure what I need. I will see. With all the boosting after vitamins coming tomorrow, may be able to use the seasoning but measure instead of going whole hog.
I do hope everyone has a good day, it is rainy here but that won't stop my recycle going out. I am in pockets for all who need me.
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Update, strange little meal but good for me I think, took a bit of shredded cabbage and a frozen spinach cube and cheese. Chopped up the cabbage, cheese and defrosted spinach in my spice grinder, heated in the microwave for 2 mins. Brought out and measured the seasonings this time to pay attention to sodium but still have taste. Used half of the serving size listed of the sour cream and onion, tiniest serving of salt as well. Last thing added was one tbsp of sour cream, low calorie as well. It was pretty good, could make this as a side for a meat pie. I am also on the hunt for no salt type seasonings as well but not buying yet. Got the stuff in vitamin form and will up the vegetables as well. I did actually buy something called nu salt with no sodium and worked down the sodium on other dishes. Could go 50 50 on real salt and the no salt and garlic spread which does not have much sodium can add the garlic seasoning vs a powder dried seasoning which may contain more sodium.
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I have a question for anyone who might have anything to contribute: Do any of you who get fulvestrant shots or are on any other anti-estrogen get migraine symptoms that you associate with the drugs? I know sometimes headaches and other symptoms like these can be called "hormone headaches" and occur with fluctuations in hormone levels. In my case the headaches themselves aren't especially bad, but I get achy, off balance, and very fatigued and brain foggy with it all too. The odd thing is that I was feeling exceptionally good about a week or so ago and actually got a lot done around my apartment; so much that it shocked me. They were having Xfinity come in here and hook all the apartments up to a new internet system (whether you want it or not), and my place looked so awful I didn't want people in here. Well somehow I got a surge of energy for a few days and tidied up quite a bit; enough that I didn't feel bad about having people come in here, and I was able to clear the area they needed to access, etc. Most of the time, I could not have done any of that, and I was floored that I had had so much energy - thought it was "spring" or something.
Then out of nowhere we got a weather change and all sorts of tree pollen came with it. I started sneezing, got the watery itchy eyes, the cough, and the whole nine yards that come with hay fever. At that same time, my mood dropped, my energy left, and I started getting some of these migraine type symptoms again; headache, lightheaded, a bit off balance, etc. I had trouble concentrating, coudn't focus, and could only read here and not really post anything. I read that allergies themselves can cause these symptoms, and they can apparently trigger migraines too, that then produce the same sort of symptoms. Have any of you ever had symptoms like this with allergies or connected hay fever to anything like migraines before? This all seems to be interrelated, but I don't know if it's unique to me or a "syndrome" of some kind. I never used to get anything like migraines until I started with the anti-estrogens - especially the Faslodex. Claritin used to take care of my spring tree pollen problem, but now it just dries me up in seemingly an instant, and every time I've taken it over the last couple of years, I've regretted it, so again, I think this is all related somehow. Any others with any similar experiences as this?
Thanks for reading, and sorry for the long post.
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Mel, I'm so sorry about what you and beautiful Gabbie is going through on top of C. we will be making a donation tonight to her GoFundMe. please do contact Susan G. Komen foundation:
also check these foundations, they provide financial assistance for breast cancer patients:
Patient Access Network Foundation (PAN) www.panfoundation.org
LBBC
Patient Advocate Foundation www.patientadvocate.org
Health well Foundation www.healthwellfoundation.org
Cancer Care Foundation www.cancercare.org
I hope these resources can offer some additional support.
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Mel, I am sorry you and your precious daughter have to go through all of this. Thank you snow-drop for the multiple foundations that will also support this beautiful family.
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thank you ladies for just being here. This is difficult abd also having cancer makes me useless at times. It’s been so sad. Double mastectomy and she’s 29 years old ? Not fair none of this is fair for any family or person.
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@micmel It's so awful that your Gabbie is still so very young. That's a lot of surgery in short period of time, too. Not to mention the mental challenges and of course financial. Our hospital, as most do, has a program for financial aide. We were able to get a reduction in our bill. Our son was able to have the hospital in Boone and M.D. clear his bill without medicaid program (he had melanoma). I'm praying for all of you and your sweet baby girl.
Hi all. Sending love and happy to hear @shanagirl some improvement. I have to agree that in our 60's isn't old, we ju'st are middle-agers, IMHO. A woman was in the office yesterday and she was in her mid 80's receiving chemo. She was sweet and determined as she was on her own (I think she came with a transit company though). Don't know I could do this 15 years from now. Gee so happy that @intolight has a new plan and it doesn't include those awful horse shots. Had my yesterday, sure is no picnic. @mara51506 Wonderful news on your scans. I was very low on potassium, did IV for a few days and now maintain it with supplements. They are working as I just had a blood draw. As for salt, that is difficult it seems to be in so many products. We stopped adding salt and started looking at labels years ago. I'm goo, but DH is on HBP meds.
We leave tomorrow in what is suppose to be the remnants of that terrible storm causing tornadoes, high winds, major damage and blizzards up north. Our train leaves at 2:30 and we will have about 21 hours to get to Philly. I am petrified I will be too sick or hurt too badly or just plain lose my mind. But we are going and what will be will be. I know this is my last trip home and chance to love on my family one last time. Gotta pray for strength and patience. It's gonna be a long 2 days. We refused to fly with all that's happening and driving is out of the question at DH's age. I no longer drive. So choo choo here we come. Our DS and DDIL are on the mend. We wanted to stop in Charlotte but the train only stops for a few minutes. Our tickets are nonrefundable and since we are on a busman's holiday budget, gotta go or lose our funds. Rinse and repeat on March 11 and 12. I think I'll sleep a day or two when we get home.
In pockets and so much love and peace to you all.
Laurel
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I had enough energy to bake cinnamon raisin bread!
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Mara - so glad to hear your scan results were good🎉🎉.
Irish - safe travels! Enjoy time with family and praying your health cooperates🙏🏻🙏🏻.
Mekestrel - that bread looks scrumptious.
Mel - Again I’m heartbroken for you and your dear Gabbie. I hope you will find the necessary resources to help her. It is an honor to donate to her go fund me account, which I will do today. Prayers for both of you🙏🏻🙏🏻
Pocket duty for all in need. HUGS to all.
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Dangit, lost the port on BCO. I should type the posts on a sticky note and copy and paste, hope I can remember.
Mel, I am still in your pocket for you and Gabbie, donated as well in case you miss that. Wish I could do more but will be wrapping you both in a big warm hug. There is food in the pocket as well, becomes whatever you want it to be.
mkestral, that bread looks really good, on my way over.
Irish, safe travels from me as well, in pocket lending healing thoughts.
Goldens, so nice to see you again.
I slept pretty well, saved people in my dreams again, they are generally pleasant and send me off to sleep.
Set up large litter box for cats, cleaned out the other and am now storing litter needs in the smaller steel box. Got very tired so took a lot of breaks.
Laundry is started, did not do enough yesterday, oh my goodness! Getting more done, decided sweeping is almost the best way to keep a neverending mess of cat hair etc.
I have been doing a lot of thought on my diet as well. I have not enjoyed meals as much because I have been to busy worried about BP. I have bought supplements coming today, potassium and a strong vit D. Only change I will make with the diet is measure more often. Not changing what I like to eat. I also intend to put in more veggies chopped into stuff or put on top of a frozen meal, I will see, I am close to a grocery order. MO wanted me to drink milk, if I decide to, has to be chocolate and will fluff it up in the magic bullet. Milk is really for the vit D since I am a hermit.
Today, having some frozen stirfry, adding the garlic spread and some chopped cabbage. Measuring the seasonings I suppose. The garlic spread is not bad for sodium and is a nice flavour. Looking into more foods that I can add to favourites that help with lower sodium. I will not give up on favourites like chips etc but can keep an eye on the sodium in a particular meal. Sour cream is no issue either. I also am getting back to using the frozen spinach cubes too and they taste good. Later can throw a couple of eggs in the microwave and add other stuff to them at dinner.
Edit to add. The frozen stirfry has peppers, broccoli and carrots. I topped with a frozen spinach cube on top, put a fair amount of the garlic spread as well. Measured seasonings, put 1 tsp of the sour cream and onion, less than a 1\4 tsp of salt as well and actually added 2 taco chips as well, realizing that it is tough to do without the salt, not even sure if regular BP. I am also purchasing a blood pressure wrist cuff, need to make sure that the result at the hospital was accurate or a one off before doing too much to my diet and potentially lowering the sodium by too much. If BP is normal most of the time with more veggies and measured seasoning done alongside, I will take hospital results as abnormal.
Have a good day, in everyone's pocket as well.
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Good morning. I meet with my MO later today to have the initial discussion to start Orserdu (we haven't even discussed the biopsy results yet!) I have already seen the approval note from Humana and received the phone call from the office to set up the delivery. I guess my MO means business! I am thankful my cancer center is on top of things and gets things done. And wow, at a cost of $26,000 a month this drug hopefully works! I am thankful I have a yearly out-of-pocket limit which I will meet immediately. I will check in once I start and see how I do.
I am praying for Mel and her sweet daughter throughout the day.
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Mara You are so creative I have no doubt that you will do a great job tweaking your diet. Since my DH is a heart failure patient I had to learn to use lower sodium products. Knorr's has no salt beef and chicken bouillon that you can add to add flavor also.
@irishlove I wish you safe and easy travels. I'm sure your family will be so happy to see you guys.
@mkestrel Those loaves are beautiful! I love cinnamon raisin bread toasted with some melted butter so yummy.!Enjoy
@intolight So glad to hear your MO was right on top of this! It means the world to us not to have to arrange meds or fight for them. Yikes, these chemo drug prices are just insane. May this treat you well and do a great job.
@threetree Hope your headache free today. The only thing I can say is I definitely experience sinus issues, ear pain and headaches when the seasons change. I am starting to feel it this week. I also get headaches with my Xeloda. Obviously we aren't on the same treatment I figured I would share. I also feel like since I was on Keytruda for 2 years iI swear it messed with my body chemistry/ immune system. Well I hope you find some answers.
Well, it's a miserable rainy windy day here but better days ahead. In the pockets of all here and our daily struggles♥️
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@mkestrel I am a big bread maker myself and those look delicious! Good for the soul after all you've been going through.
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Mara great news yay!
Intolight, you might want to take Elacestrant with high-calorie food to avoid nausea and make sure your MO orders a lipid panel in time. this medication can increase cholesterol, so it’s good to keep an eye on it. I see in your signature that you've been on Xeloda, we are on reverse treatments! I've been on Elacestrant and now switched to Xeloda. what happened with the Xeloda treatment that you switched so soon, if you don’t mind sharing?
@sondraf I’m worried about you. please post even a few words let us know how you’re doing.
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@snow-drop I can see my dates are wrong…sorry. I will go back in and fix them. I was actually on Xeloda for a year right after Ibrance. Then it failed and I was put on Afinitor. I was only on Afinitor for a few months when it put me into the hospital with pneumonitis. They can't prove it but after a week in the hospital running every test they could they decided I was probably allergic to Afinitor. Then I was off all meds except for Zometa for four months while my body cleared out the Afinitor before I went on Verzenio and Faslodex. Tomorrow I will see my MO about the Orserdu and whatever else I need to be on since I am now progressing again. Thanks for noticing this!
@mkestrel I forgot to mention your lovely bread loves. So yummy! I made banana bread yesterday but of course I used a box mix. At this altitude I struggle with scratch recipes!
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OK, tried the stuff I ordered from Amazon, the good, bad and pretty ugly. The good, I like the vit d vitamins, one shewable and the other a gummy, both were a nice taste. The Nusalt no sodium was a different story. I sprinkled some on my hand to get a handle on the taste, gross, had an after taste too BUT putting a little bit in a frozen lasagna and a little regular salt was not too bad. Lasagna with a frozen spinach ball was good. I also bought an electrolyte drink, supposed tasted like raspberry, no it tasted like meds with the sweetener used in diet drinks. I decided since that was so expensive, I will go on with it. Put a scoop in some water, stirred it and plugged my nose and downed it quickly.
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thanks for everyone in my pocket today. My MO was not very concerned. She will scan in six months. If that shows progression she will change meds
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Good news, Wren!
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Good evening all
Mel sending prayers and encouragement to Gabby and your family. Please I pray it gets easier. You are so knowledgeable about this C and I know you will be a fierce advocate for your baby. I know everyone who knows you will send what support they can in money and standing beside you.
Much love and respect
Tanya
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Mel - I didn't mention this in my PM, but I did want to echo what someone else here said about how most medical clinics have patient assistance programs that very well might be able to help. It's my understanding that they know about available programs, and also that some of the hospitals will just out and outright forgive some bills in certain situations. Since this is such a "one in a million" sort of thing, I would think the hospital might just forgive some or all of the cost. Just more off the top of my head stuff, for what it's worth. Also sending more hugs to you, Gabby, and the rest of your family. We will do all that we can to help!
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we’ve been assigned to a social worker. She said so many young girls are being Diagnosed. We’re doing the best we can. She’s facing radiation next, one more heavy chemo then radiation. She can’t work if both arms are involved, especially for mastectomy’s. This is a nightmare. I’m still in shock. Thank you ladies for being here and for being you. I’m grateful, but have been told grants are running thin lately. We’re lucky the eggs grant came in. Now the trick is paying for monthly storage to freeze them. Runs into some money. It’s just not fair. I hate cancer
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Mara Sorry things didn't go well with the treatment.Hope the big D clears quickly. I wonder if you could speak with a nutritionist they usually have good ideas how to incorporate specific in your diet. Feel better.
Mel Glad you have a social worker on board now. They are usually very helpful and I hope this can relieve some stress for you. Continued prayers.
@snow-drop Looks like sondraf last active on 2/22, hope she is doing better. Also think of sunshine/Carol often too. So many wonderful people here it just makes me sad that to hear all the struggles. Such a reminder of how relentless cancer can be.
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Mel, so glad things are moving along, still sending support your way.
Cookie, it is clearing up. I put the blame squarely on all the stupid supplements I took so already dumped the magnesium citrate and not taking anything with magnesium. Spent the day with muscle cramps. My only things sticking around are the nusalt, just a tiny dash on food and using salt the way I wish and breathing the 4 7 8 to relax. Keeping the vit D as well. I have not enjoyed food since I made changes so back to normal, more veggies starting from tomorrow and more exercise, thinking a marching sort of exercise.
I was also really annoyed, some stupid person used my garbage pail, the kind with wheels that I would have to put stuff in at the back and drag up front, with a cane no less. They left it near the steps and a picture of it with trash strewn about as well and told to clean it up. I sent two emails back explaining I have not used it for at least 5 years and would not be able to use one with a cane. Told them to send a mass email to the building. I understand that the pail said unit 5 but most people are aware I use bags only and take it out the front, I know I should not be so angry but it really ticked me off getting an email with a picture like bad resident, clean up your mess.
Got to say, while in my bad mood was perusing my you tube when an update to an old Molson Canadian commercial came up today and it made me feel happy in these uncertain times.
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I slept pretty well last night all things considered, it is nice and sunny and above freezing today. Might melt some of the ice and snow a bit. I did not go out yesterday with DB or SIL due to the possible icy conditions. Next week has some much needed warmth and that will be good.
No plans for today, mostly housework, loads of laundry and some dusting. Doing some floor work, start with sweep, vacuum and mop.
Got rid of the vitamins with magnesium in them, the citrate not only caused the big D, gave me cramps galore throughout the day even on a half dose of the powder. No thanks, QOL yesterday was miserable with digestive issues and cramps, tossing the pill form of it as well that I did not try. I will keep vit D gummies and the nusalt potassium salt replacement. It does taste weird but I just take a dash and add to food and it really starts to taste like just another seasoning. I have not been enjoying food since the doctor told me to get more potassium, electrolytes and vit D. I also am seasoning as before. I also do not like the blood pressure cuff as it tells me a bit high at one point and a bit low at another. Decided deep breathing will have to suffice and to stop buying stuff on Amazon, keep it mostly for cat supplies. My mind just jumps to things to solve a problem instead of sitting on it and I spend too much usually.
I am better today though, planning my normal type of meal. Thinking of pulling beans out the pantry, may include some lentils as well. I also want to finish the cabbage slaw. Eat those with rice or noodles. Been craving swedish meatballs so putting together a Walmart delivery, get a couple of boxes of those and looking into more veggies as well. Might get some more of the meatless things as well to try some new things. I will see, not sure what my first meal might be, leaning toward egg and peppers, cooked first then chop in some beans and peppers. Need to check pantry as well, see what else I may have. Include more of the bean variety as well. My other thought, take the same veg stir fry, add more peppers, heat up first and then take eggs, add the stir fry and pepper mix, heat in microwave again to cook eggs, chop up all of the mix with some cheese, heat to melt cheese and it should be really good. I will figure it out.
In everyone's pocket who needs me, thoughts to those still dealing with big Issues and those who read more than post. In my own pocket to stop being a worry wart and get back to basics and just go with how I feel instead of letting a BP at the hospital send me into a tailspin of worry. I don't do that with cancer, bloodwork should be no different. I also need more discipline with what gets purchased on Amazon cat stuff for the most part. I do hope everyone has a good day
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Grocery order done, bit of frozen pasta, canned peas and beans. Mini pot pies and meatless sausage patties, think those would be good in other recipes, 3 packs frozen swedish meatballs and trying some egg bites with spinach, parmesan cheese and spinach in them. Couple things replaced, penne pasta with chicken in an alfredo sauce and could not get the egg bites but could possibly make my own. I also got english muffins but only 6. Can easily use for peanut butter or peanut butter and sausage patty sandwich. I will see.
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