My Husband, My Life, My Love, My Family, My Cancer
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@intolight Is it bone pain or muscle pain. If bone, a claritin day before day of and day after treatment can make pain subside some with no interaction. Works with Taxol as well. I used to take it when I had the injections to build up white cell counts and that pain was terrible until told about the claritin.
@candy-678 I am so sorry to hear about your progression, in you pocket as the days go on to hear what you may be looking at treatment wise.
I just woke up, was in bed watching the videos on facebook and then drifted off. That is OK though. Need to set alarms Sunday and Monday as I have a CT scan Wednesday and MRI results Thursday. Then next week have a longer one day appointment with MO and Herceptin on the first of April. Once those appointments are done, 3 weeks off thankfully. I really don't like being so busy.
Not sure what to have today, out of lentils in the fridge but can check my pantry. The chefboyardee ravioli which I rinsed off since I do not like the tomato sauce worked out well with subsequent meals, they were a good additition to meals and leftovers. I did locate a can of lentils, got mostly black beans and other stuff. Thinking of putting together a grocery order once I go through my stuff, need more cheese and eggs.
Did put together the order, no junk food, cheese, eggs, sour cream, only got one yogurt but got 2 bananas, 3 cans of lentils, couple of meat pies and more tostitos queso. Got mini pot pies. Expensive, almost 60 bucks but can do without shopping for a couple of weeks. Did not buy enough to overstuff my pantry and none of the pantry items that are not needed. Couple of tostitios queso, sour cream are the most important.
Meal included some lentils, chickpeas and two eggs. I started by spraying the air fryer, put in some salad dressing at bottom, added two eggs and the chickpeas and lentils. Cooked in air fryer on high, stirred it around every 4 or 5 mins. Did that a couple of times then let it cook the rest of the way. Scooped it out into a large bowl. Added some tostitos queso and plain mayo. It was really very good and not too filling. The fibre was good for me as well.
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@chicagoan - I so get it! You've said it very well.
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I hate those leg cramps! Stretching does help. Sometimes I get up and smear biofreeze on my legs. It seems to help
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@aj I never thought of trying biofreeze. I'll keep that in mind.
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Thanks for the good wishes and sharing your experience. I've often noticed how supportive you are to everyone here. Looking forward to seeing pics of DD's wedding!
@mkestral
Another member here of the nighttime leg cramp club. I agree with chicagoan that stretching in bed doesn't help. I have a 4 poster with an elevated footrail and I ease my feet to the floor and lean onto the bed as I limp around one side, across the bottom and up the other side, then reverse for as many times as it takes. I also find that stretching helps as well as making the bedcovers loose so nothing compresses my feet during the night.
Thanks for sharing your experience with B12 injections. Please cross your fingers for me on April 9, when I will have iron infusion, blood draw, fulvestrant, Xgeva and B12 injections all in the same appointment.
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@eleanora - That is an unreal amount of stuff to deal with all at one appointment. Wishing you all the best for sure! I have appointments on that day too ("just" scans), so it will be easy to remember, think of you, and send good vibes and thoughts to you that day.🤞
I too have noted how much @cookie54 posts especially caring messages for so many. They are greatly and especially appreciated!
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@eleanora Good luck with your upcoming appointments.
For all dealing with leg cramps, I am sorry you are dealing with that.
I got up early today to make sure I could book Paratransit for the CT scan, tomorrow will get up and book another Paratransit for results of MRI last week. I get those results Thursday. Then next week will be at hospital the whole day to get CT scan results and see MO and couple hours later have my Herceptin then get to rest for three weeks.
Today, awaiting a new magic bullet. I was careless and thought I lost my magic bullet blade and container so I decided to buy another one. Turns out that it was underneath something in the sink. Duh. Oh well, I will keep new one as it has more different pieces and look for another place to keep it. It was only 30 bucks.
I am planning on egg sandwich, use my mini griddle, put egg and cheese in there and also possible lentils. Heat up the english muffin as well. Just butter and mayo on it. I have two mini griddles so those can be used for a hashbrown or two. Later can put a spoon of yogurt and a spoon of sour cream and some mio with a banana. The sour cream and yogurt were good yesterday so same drill today. I was tempted to order McDonalds egg mcmuffin and hash browns but lately, the store delivery does not open til 11am. I can order a couple of egg mcmuffins if I want I guess. Just cannot get hashbrowns. I would rather make my own I think and make my own hashbrowns. I am also thinking of making plain white rice, taking a can of meat, chicken for example, chopping up peppers if I have them and having an imitation queso bowl. Will post later.
FIRST MEAL Pretty simple, took one of the frozen veggie stir fry, put a mini pot pie on top and added maybe half of a 1/4 cup measure of lentils, added to the microwave for 6 mins, will put into a bowl and add seasonings and binders. Just wanted food. May do the other stuff later.
I hope all have a good day, in pockets for everyone.
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@candy-678 I'm sorry to hear of this brutal gut punch of liver progression. Of course you know all your sisters here will be in your pocket as you navigate this. I hope your able to get in quickly for the biopsy as the anticipation of the procedure and the plan ahead can weigh heavily on you. Prayers for strength coming your way.Hugs.
@goldensrbest Geez I am surprised to hear and disappointed for you that you didn't get relief with the pain stimulator! Back pain is no joke as I know I lived it with my hubby. Well it sounds like you still have a window to see if it may help. Fingers crossed that the nerve pain will calm down and this is your golden ticket to relief.
Oh the leg cramps….wow they can be soooo painful! I seem to experience them the most if I'm sleeping and change leg positions too quickly. I have scared my poor DH when I pop up out of my sleep to try to massage and stretch my leg. I also just try to stay very hydrated and stretch.
@eleanora @threetree Aww thanks for your kind words😘We are all blessed to have each other here for support. Honestly I feel it here more than any other space in my life💕 Just because we all get each other and deal with the same crap lol.
Holding everyone here in my daily prayers always .
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@goldensrbest In your pocket the pain will calm down for you.
Got the last Paratransit booked for Thursday. So this full week includes CT scan for Wednesday, looks from neck down to pelvis. Should be short and they do not usually make me take of clothes which is nice. Thursday is the RO appointment to go over the MRI from last week. Then I will be off for the weekend. On the 1st, will have MO appointment so she can go over the CT scan. I will have Herceptin later on the same day and then some time off, 3 weeks to be exact which will be nice.
Doing up some laundry, cat had an upset stomach so will wait a bit and give him some wet food, easier on his stomach. Will put some of the laundry disinfect stuff in for the second cycle. Floors and bed need doing as well. I also need think about taking days off to do up my renters insurance again for this year and of course taxes as well. Waiting til April 10 for tax as I get GST, goods and services tax credit and Trillium as well which is another tax credit I get monthly. I have until April 30 but will not take that long to do up taxes, mine are simple to do.
Planning on possibly another veggie stir fry frozen meal with the lentils and possible rice done up as well. Post later what I have.
EDIT Had a craving and Mcdonalds had their breakfast menu including hash browns and a Buy One Get One Free meal so got 2 sausage muffins which will go in the fridge and an egg mcmuffin meal with 2 hashbrowns. Eating the egg mcmuffins first. Wish I could make the hashbrowns taste just as good.
I also streamed Deadpool and Wolverine and a spoof movie National Lampoon's Loaded Weapon 1 which made me laugh quite a bit. Non stop silly gags and jokes, a spoof of the Lethal Weapon movies.
I hope that everyone has a good day and I am in everyone pockets for sure. In my own to get stuff done, floor does look good, been mopping more often.
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Hi Everyone,
I fell off the map for awhile pretending things were great…and they were! I was checking in to see how you all have been doing and hate to see the challenges so many are facing as well as learning about long time friends we've lost.
Like other long term contributers, my NED status changed. And I'm now TNBC so treatment will change as well. It appears to have moved from my bones and breasts into my lymph nodes and chest muscles. I have a consultation with a surgeon tomorrow. The thing is, I have no plan to sign up for surgery or chemo. I've had 10.5 years NED with MBC. I might consider radiation to slow things down, but at 74 I feel that extreme measures are less than ideal. Anyone hear had their type change to triple negative? Any good treatment options you've tried?
Looking forward to Spring! I planted my first tomator yesterday and immediately covered it with a plastic bottle to protect it from frost. I REALLY want a good tomato in June!
Hang in there ladies!
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@mara51506 Well your certainly going to be a busy bee with appointments. I’m sure you’ll look forward to those glorious 3 weeks off! Fingers crossed and in your pocket for results ❤️
@iwrite
It’s nice to meet ya, sorry it’s under this condition. So sorry to hear your dealing with progression . I am MTNBC and have always been Triple negative since Stage 1. TNBC has come a very long way with treatment over the years. If you were interested in immunotherapy and are PD-L1 positive, Keytruda is frequently used for triple negative. Wishing you strength as you navigate your decisions. We’re always here for you.3 -
@iwrite sorry to hear of the progression. My Ned status of original cancer didn't change, still stage 4, but a new primary dx of TNBC in the same breast. I just did the standard protocol which I really thought was a piece of cake.
I did 6 months of chemo with minor side effects. I couldn't do radiation as I had it there before. So mastectomy required. That too was super easy. But only cause surgeon used a nerve block. Also w Keytruda.
You're stage 4 though so I don't know what maintenance therapy would look like for you.
I've been fortunate in that to me cancer seems just like one big inconvenience. But very do-able. Good luck with your decision.
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Liver biopsy scheduled for April 6.
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In your pocket for easy procedure with treatable results.
Welcome to the group. There are lots of members who have had every sort of treatment, so once you have more info, I'm sure those with specific experience will respond. The waiting phase that you're in is always difficult as you can only imagine the possible side effects of potential treatments and whether you are willing to deal with them.
At 75 and a half, I am slightly older than you, and I have been Stage IV for 4 years. In the beginning, I had high intensity radiation to two sites. I currently take Kisqali, a CDK4-6 inhibitor daily, with monthly injections of Faslodex and Xgeva. The adjustment at the beginning was a rough 3 months and required a dose reduction, but I'm very glad that I stuck it out. During the 4 years that it has extended my life, I welcomed a new grandchild, spent precious time making memories with my older grandchildren, and travelled to 13 countries - some of them more than once - as well as many places in the US. I still have at least three "pill form" options left for future treatment, including an oral chemo named Xeloda. My quality of life has been very good for my age.
At some point, my only option may be IV chemo, and I agree with you and may refuse that, but I'm not there yet, and I'm hoping that you're not either. Fingers crossed for manageable treatment options once you know the details.
Hang in there - we're all here with you!
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@eleanora @iwrite I am 73 with almost 10 years of MBC diagnosis and treatment this May. I have run through my oral options and decided to try IV chemo since I did not go this route in the beginning having been dxd Stage IV de novo. I have had no surgeries. Today will be my 8th Taxol infusion. I used to say I wouldn't do chemo but here I am. It hasn't been too difficult and I decided to try it as I know several ladies who have been on chemo for years and do okay. My oncologist and I agree if it gets too difficult I will stop. She did tell me it gets harder the longer you are on any treatment and the older you are. She does her best to make doses etc., as tolerable as possible knowing QOL is important to me. I am thankful for her attention to my care. My PCP also helps along the way. My scan last week shows it is working well and my back my pain is almost gone as are my spine lesions, but I do get joint pain for three days post infusion. I guess I just want to be around to watch my four grandchildren grow up. My biggest complaints are I wish I could travel and a lack of endurance. We are all different and I wish you the best whatever decision you make.
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@intolight I'm really glad to hear that the chemo is working for you and has alleviated your back pain. Would you be able to skip some chemo treatments so that you could travel? I think I would be like you-I will try IV chemo and if it is too horrible, then I will stop. But as we know, untreated cancer can also be quite awful in terms of pain. Ever;y moment of life seems so precious when we are fully aware of our mortality with MBC.
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Thank you for sharing your experience. I remember some of your earlier posts and you were very thoughtful in making your decision. I am rooting for you to wipe out that beast and start with a clean slate. I may change my mind when the time comes. Looking at your history, you have been on many of the treatment lines that my MO has suggested would be possible for me. Do you mind sharing your experience with Verzenio? I am already taking Faslodex injections, so I have four years of dealing with those!
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@eleanora I was on Verzenio almost three years and it worked well for me. My main problems were fatigue and gut issues. (I had diarrhea.) I took an immodium every other day…sometimes every day if I hadn't eaten enough fiber. It was tolerable as long as I was prepared. I did have a couple instances when I was out that I needed access to a bathroom quick. During my time on Verzenio I did take an Alaskan Cruise and did well so travel was not impossible. I was also on Faslodex for those three years, but we stopped it when I had progression. I hated the shots but was faithful as I know they helped keep the lesions quiet. Hope this helps.
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@intolight I am also susceptible to gut issues no matter what I eat so load up on immodium and digestive enzymes. I like food a certain way and with flavour but know beyond cancer treatments, need to pretreat gut issues of any sort as well. I do load up on fiber and avoid any constipation myself with all the stuff I take.
Had some insomnia so filled my time with snacks through the night, if you suffer from it, might not be a bad to eat small amounts to keep up your strength. I will be able to sleep well tonight.
Planning to have some rice, lentils and cheese. Put together 1/3 cup rice and 3/4 chia seeds. Will add the preheated rice and chia seeds to my air fryer, spoon put in some of my beefless ground lentils and added some burger sauce and will top with garlic parmesan mayo. When the air fryer beeps will remove the drawer, stir around a bit then put back in.
EDIT Final meal before CT was super good I must say. Going to bring at least one digestive enzyme and one immodium if I get off super early and decide to get some food
EDIT 2 Appointment went superfast, was done within the hour and got to phone Paratransit to request an earlier ride home. This time there was no contrast used and that is fine by me. I am now making my final meal today, just a largeer beef meat pie with a smaller mini chicken pot pie. It should be very good.
I ordered couple of seasonings from Amazon, running low on sour cream and onion and found a garlic butter seasoning as well that I would like to try. Also got some dishsoap coming, the palmolive citrus smell, I enjoy it a lot.
Anyway, short cycles for shirt and undies in the laundry, just need to freshen up before I go.
In pockets for all and hope all have a good day.
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My MO called me last night. He ordered a PET- last one was 2021. He said if the only area that lights up is the liver tumor that I should consider ablation. I remember NicoleRod on here did ablation and had severe pain after. And she eventually died, and I am still here and she had ablation and I have not.
What do you all think?
I am going to see if I can find the Thread about Y90, ablations, etc. I don't think the Thread has been active, but I could review the posts.
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@candy-678 It will be interesting to see what the PET scan reveals. If it is only the liver met, I personally would get the ablation, just b/c I want to keep living. NicoleRod had her own issues-you are a different person. Hopefully you can find the thread and hear from other people who have had ablation, it the PET scan reveals the cancer has not spread elsewhere. So far you have responded well to your first two systematic treatments. I am imagining there are many others for you to try. It sure sucks having cancer and having to make these decisions but I'm grateful that at least we have options to consider. Maybe post on the Liver Mets thread? I think that one is pretty active.
@mara51506 Good luck with your CT scan today.
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@candy-678 I hope your biopsy and PET help find a good treatment. In my case, I was told that none of the ablation or other treatments or surgery were an option, probably because I had more than one met and there would be more danger of causing the liver to fail than the possibility of curing it.
I was on Verzenio for a year I think but had to change treatment because the white count kept going too low.
Onc PA blamed my leg aching on the shot for white cells.
I went hiking yesterday at Celebration park. There are petroglyphs, trails along the river and a small lake. It's already getting too hot to hike in the desert! The huge smooth boulders were rolled around by an ancient flood.
If you zoom in on the lake, there are a bunch of turtles on a rock.
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Beautiful pics - thanks for sharing. Looks like you had wonderful weather for your hike. Glad you were able to enjoy it.
Thanks so much for the info, it was very helpful. My MO tends to downplay or dismiss SEs, so I want to know the experience of actual patients.
Hope the scans show just the single liver met and that local treatment obliterates it. I posted something on the liver mets thread last week about a new method using electric pulses which have shown success. Fingers crossed.
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@candy-678 I was thinking it was y90 that Nicole had twice? The first time was okay, the second very painful. Whichever local treatment it was, she thought the pain may have been due to the different location of the tumor and/or the fact that she was super thin.
@eleanora I've been on Verzenio 5½ years. The GI issues have been the biggest issue with it for me. A dose reduction to 100mg helped a lot with that and it's pretty manageable now; it also improved the fatigue. Some people do not have any GI issues with it.
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@mara51506 Thinking of you , hope all went smoothly today!
@mkestrel Wow, simply gorgeous pics! Glad you got out for a nice hike, with that scenery it's a bonus.
@candy-678 Also hoping for a solitary liver met and possibly an ablation to wipe it out! Read up, no two situations are alike and your experience may be way different. Knowledge is power and strength to help you feel prepared to what you may be facing with the ablation. Hugs.
Hope everyone is having a decent day!
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I had bone and ct scans Monday. The bone scan says I have a new fracture on my 4th rib. How this can happen without pain I don’t understand. I’m expecting to be put back on Zometa. No results yet from the ct. I’m worried my Doxil isn’t working
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Seeq- Now that you said that I remember Nicole was thin. I too am thin. And I read it depends on the location of the met- close to the stomach can cause more problems. Or next to a blood vessel.
I am leaning away from Y90 or ablation. Seems like it is chancy and, in the end, they cannot get ALL the cancer cells. I am thinking another systemic treatment plan.
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