My Husband, My Life, My Love, My Family, My Cancer
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Sunshine, glad he was so thorough for you and will wait until November.
Finally set up for mail, nothing wrong with my keys, found out there are three boxes with the number 2. It worked, hospital appointments and flyers, really not that much for a few weeks. Nice of the postal person to show up so quick though. Took UBER there but since it was a short walk, walked on the mud, there were slippery bits but moved to the vehicle tracks and it was not bad for me. Sort of a prewinter practice. I like that I can travel down the road best when dry but divots and everything are not a problem as long as feet are kept track of.
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@threetree Oh no that was a terrible fall. I hope you heal fast! There are some good people in this world and grateful that the lady stayed with you and kept you awake. A nurse told me to keep a alcohol wipe in my pocketbook for times I feel faint. Good hint. Is there any such service as meals on wheels that could help you?
@sunshine99 The last xray of my chest showed ground glass opacities of my lungs and the ER doctor dismissed it as probably left over from covid. I did tell him about the b.c. in lungs but he felt they looked pretty good. Of course that was only based on an xray. Hope you get good news from pulmonologist.
@mara51506 Well I don't know your SIL and Bro, but I would not listen to that nonsense about dementia. I've heard it from others when I was first diagnosed with MS, that my brain would atrophy and dementia would set in. It's been 22 years and no such thing has occurred. You are right to listen to your doctors and put that opinion (which is all it really is) out of your brilliantly beautiful sharp mind!
@micmel After 7 yrs. with your MO, it would be like losing a good friend. Especially when you depend on them and trust them so much. I'm so sorry and hope someone terrific will be taking care of you.
Waving hello to everyone and hoping you are having a peaceful Monday. IN everyones pocket for scans and healing!
Went for zometa infusion today, along with faslodex shots. There is a nurse who is nice, but always has to give it two tries for a vein and then find someone else who gets it on the 3rd try. My MO is still out sick, so all infusion patients had to go to the MO located next door. The place was a zoo. My DD and DGD picked up a baby p.j.s and windup stuffy kitty for the receptionists' first baby (an 8lb 9 oz girl, ouch). Not sure how to spell the name, but it's pronounced either Jansen or Jensen. I then went for mental health appt. It was just intake and no therapist available for 3 months, except telehealth video. My hearing is awful, so I declined that. In an emergency I'll call and have DH help me.
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Micmel, I am also sorry that your MO is going to be gone but in your pocket for a new one that is just as good or better.
Irishlove, part of what motivates SIL and DB was a promise that after she died, they would look after me so there is some of that in there. I also would never say anything unless there was something I did not want to do, they love me and I feel it. I can adjust and just allow them to worry about me a bit and let them know of trips I did take like telling my SIL that I took a walk home through some mud and did not slip. Need to clean shoes.
I am happy got all the issues I was having solved, internet and mail mostly as well as the MRI app't. Oct 26 will be the day we all find out if the issues I have been having are brain related or something else. In the meantime, I am doing laundry, sometimes wish I had a bigger washer but that fantasy flew out the window due to space. Using liquid detergents today, still liking the borax though. Breakfast will be eggs, rice, beans, wheat bran and cheese blended up and heated through in fry pan. May use some butter, just a small amount and tiny amount cooking spray just to get t he buttery taste. Should be good. I am planning to mall walk as it is nice out and it should not be slippery. Will probably aim to be out before school lets out at 2 pm for the high school kids.
Anyway, I hope everyone has a good day and I am in pockets for everyone who needs me, already gave all pets a kiss as well.
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Thanks Mara~ it is a bummer.
sending love to all!
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Irishlove - Wow, an alcohol wipe! Who would have known? Never heard of that before, but I think I'll start carrying them around too. Also, why don't they have the nurse who ca find your vein on the first try assigned to the job in the first place? So sorry, that's just not right since this seems to happen routinely.
AJ - Can't thank you enough for the offer, and can't say that I absolutely won't take you up on it, but for now I think my friend should be help enough, and then maybe in a week or so, I'll be able to go down to the apt complex gate and meet a delivery person.
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Hi everyone, I hope everyone is doing ok. I one of the lurkers, I always check in but hardly make a comment. I need some advice right now, I had my Petscan last week and it shows some progression and new lesions on bones. Is it consider progression if new lesion are on same body parts and all other body parts are normal or stable? Normal liver & kidney, and lung nodules and mediastinal lymph nodes are stable. I am on Faslodex & Kisqali 400 mg. My prior Petscan was a year ago when I was diagnosed with MBC. My MO wants to change treatment. It scares me to change treatment because I think it will be downhill from there. Do I have a choice? What are my options right now?
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@anx789 Sorry that you are having to look at possible changes in treatment. When they see changes in the scans, it's not unusual for the treatment team to look at options, or adding additional treatments. And of course those options depend strongly on your particular situation. Have they explained what they are considering? Also, this is always a good time to seek a second opinion if you feel that this could be helpful in the process.
We're all here for you and glad you chimed in today. 🤗
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@anx789 would they consider radiating the bone lesions and having you continue on the Kisqali/Faslodex? I am pretty new to this so don't know a whole lot. I hope that they have a better tx in mind for you that shrinks the bone lesions and keeps everything stable. I am on my first line as well and am afraid of tx changes in the future but hoping that other treatments can work just as well.
@micmel I am so sorry to hear your MO is leaving. I would be sad too if mine did, we definitely put a lot of trust into them and 7 years is a long time to be working with them. I hope your new MO is just as good.
So I am scheduled to have an endoscopy on Friday, has anyone ever had one and could tell me what to expect? This is my first time having one, has been my first time having many medical tests and procedures this year 🙄 and am just a little apprehensive about a camera shoved down my throat.
Also I feel like I need to apologize for the amount of questions that I ask in this thread. This is all very new and this seems like such a warm and accepting group that I feel comfortable coming to. :)
Keri
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Keris~never any need to apologize… we are here for you…we all have questions and things that concern us. Sending hugs to you.
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Keris - Are you talking about an upper or lower endoscopy?
Mel - 7 years is a really long time indeed, to be with an oncologist you like and trust. I haven't had the same kind of thing, unfortunately. Sounds like you've been very lucky and I'd hate to be losing that too. Hopefully there will be some new positives with the new dr, even if they're not the same. I like to think you have a new chance to develop a new and positive relationship with someone else, and that it while it won't take the place of the old one, it will be a good experience - maybe just as good in a different way. Best wishes for the new relationship.
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@anx789 , feel free to ask as many questions as you want. You may even ask something someone else needs to know! Also, I am sorry to read of your progression, but there are other oral options available once one fails. Hopefully your onc will find one that works for you. As you can probably tell by our signatures, many of us have changed meds multiple times. It is what we do… I have had seven years of scans and changing meds and am doing pretty good right now. There is hope that you can live a long time. A year between scans though seems a long time. My onc scans more often. It adds to the anxiety but also keeps me informed. You might ask.
@keris113 I have not had an endoscopy so perhaps someone else will chime in. It sounds like you have not had a lot of procedures and that is a good thing. Hang in there!
Chris
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@keris113 - radiation is not an option right now because I have very extensive bone met but no pain. My met are bones, lung, and mediastinal lymph node. Pet scan shows everthing are stable, and no new lesion anywhere else except bones. I am wondering if I can just wait and see. I read an old post from Moth (may she RIP) that they recommend a wait and see approach wIth my situation.
@intolight my MO assumed that Kisqali is working because I have no symptoms and no pain; and my bloodwork are normal until recently when my markers are creeping up.
thanks for your comment, I also apologize if I am intruding.
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@threetree It is an upper endoscopy I think
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Keris,
I've had an endoscopy (I guess "upper" as it was to look at the stomach). Nothing by mouth for prescribed time before procedure, IV for light sedation, lay on your side, no pain, I don't remember a thing, didn't take very long, only risk I remember being told about is bleeding if a biopsy is taken.
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Mara I sure empathize with you getting unsolicited advice on brain function. I agree, leave it to your doctors and those who have been through it. I have noticed since my SRS that my balance is not the same and my RO warned me that for the next month those cells would die off and then form scar tissue. I have what I call my "Captain Jack Sparrow moments" sometimes when I walk. I haven't fallen yet but my balance is sometimes really bad. My memory is not what it was either. I don't know if I can attribute all of that to the brain mets or SRS but I wouldn't want someone to assume dementia just because it's an easy go-to assumption.
I posted to the weekly Taxol group but it doesn't look very active. I started losing my sense of taste last week and it's continued. I remember that from my initial diagnosis where I got TC every three weeks. I'm hoping I don't have 6 weeks ahead of me not being able to taste anything, we'll see. I figure if that's the case I might as well eat all the healthy things since the indulgences won't taste right anyway. I've already decided when I'm done with Taxol I'm going to order my favorite Mexican food and have it with a diet coke.
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emac877,
I did twelve rounds of Taxol and things tasted…off….or just plain bad. I ended up eating bland things like scrambled eggs that were sort-of healthy. It took awhile to find things that I found sort-of enjoyable to eat.
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Nice to see some new faces. Elaine,anx,welcome to thread. Nice to meet you!
emac~ I’m so sorry you’re dealing with this. Taste is a big deal. I’m dealing with mouth issues so I can kinda relate. I hope you’re going to get some real benefits from going the extra treatments…. Sending my best
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Keris - My experience with an upper endoscopy was just the same as Wendy described. I was nervous of course, but it really wasn't as bad as I thought it might be. I also had the added pleasure of learning that there was absolutely nothing wrong with my stomach. You'll be fine!
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Keri’s endoscopy was an easy test. I did have soreness afterwards bc the did a biopsy. I was prescribed medication to take to assist in healing. It was minimal soreness and an easy test. I hope that it will be good for you too.
Mara listen to the doctors and don’t read into coincidental falls something as major as dementia. I think they mean well but …
mel sorry to hear about doctor change. I’m hopeful you’ll get another good one.
emac I lost taste from taxol and drank wheat grass other healthy stuff since I couldn’t taste it. I enjoyed salty chicken broth/soup and pita or crackers. Definitely enjoy the Mexican food when you’re done.
Tanya
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emac Countdown to the Mexican and diet coke! I remember losing it totally on A/C, no fun. Sorry that you have to go through it again. Positive vibes your way.
Mel Hope your feeling a little better and your pup is bringing you comfort. Sorry about the MO situation, they become a family member to us.
keris Agree with everyone who described it perfectly. One of the "easier tests" we go through although I wish you didn't have to it at all.
Mara Hope you had a good mall walk yesterday. As always admire your get up and go attitude!
Dodgersgirl Thinking of you……hugs
Good to see Elaine and Anx happy you stopped in, warm welcome.
Happy to say I am cleared for treatment today and will restart my Xeloda also. Hoping to never deal with Salmonella again!
Have a relaxing day today.
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Glad you’re feeling better cookie! Salmonella can be rough. Good to see you.
thank you Tanya and everyone about my MO. I’m still not really happy about this.
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@sunshine99 I’m so sorry you are dealing with the lung and coughing issues. I hope your pulmonologist can help you resolve them. @mara51506 You take care of yourself and keep plodding on. Be careful and don’t go out in the rain.🩵
@threetree , that fall you took….OUCH. So sorry that happened. Hopefullly you have help with meals and everyday necessities around your house. I will be in you pocket as you continue on healing your broken humorous. Saying lots of breath prayers for you throughout the day.💗
@weninwi @emac877 @cookie54 @tanya_djamila @micmel @irishlove and all on this forum, waving hi and sending gentle hugs to everyone.
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Thanks so much, Shanagirl! I'd write more, but still doing a one finger hunt and peck. Much harder on laptop key board than you might think. Jumbles the brain a bit.
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Keris, I can tell you my endoscopy was almost a non-event. I was so worried about mine as I have a very healthy gag reflex and didn’t look forward to having something shoved down my throat. They didn’t have the numbing medication, but I was given twilight sedation and don’t remember much of the procedure at all.
Is this for your esophagus or trachea? Mine was for my esophagus and although I do remember some slight discomfort (it was either the biopsy or the stretching of the esophagus) it really wasn’t bad. I have to have another one and I’m not worried about that one.
I do have a swallow motility study next week and I must be awake for that one. It involves a tube threaded through my nose and down the esophagus (like an NG feeding tube.)
The pulmonologist may want to do another procedure in my lung. That also involves sedation, and the tube would go down my trachea rather than the esophagus.
Sorry for the long answer to your short question.
Will scroll back and respond later to the other comments. Gotta run right now (well, walk, actually, but you know what I mean.)
Carol
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Hi all, Just returned from my 2nd infusion of Taxol and Phesgo injection. Tired, but overall okay. The worst part are the ice blocks on feet and hands. They did not do that back in 2016 on my first BC diagnosis and chemo. I just pray I can handle this and that it gives me more time.
Threetree, so sorry to read about your fall. You must be very grateful that a kind person helped you until medical help arrived. I think I would have melted into a giant mess. My husband passed in January and my only daughter, with two small children, lives 30 minutes away. She's always ready to help out, but I'm sometimes reluctant to ask because she has a lot on her plate. No need to respond, I know how hard it must be to type with one hand.
Mel, I hope you can find a way to resolve or improve your mouth issues. On this journey, it's sometimes hard enough just to find a food that is enjoyable and doesn't cause GI issues. Please take care, you may not realize how much you are needed here.
Mara, I know your DB and SIL love you and are probably worried. But, you and your health team know best what's going on. And, I think jumping to a diagnosis is not helpful. After reading your posts for several years, you seem to be a strong, capable, funny woman who handles problems by digging onto them, getting the facts and then dealing with them. Not even close to someone with dementia.
Sending hugs to all. Jan
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Mocogram~what a kind thing to say. Thank you. I love it here because we care about each other. I’m so glad you’re here.
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Thanks everyone for your advice and encouragement. It helps ease my mind a little bit. @sunshine99 I think it is for my esophagus/stomach. Not entirely positive. I have had some stomach pain that has been ongoing and they think it may be an ulcer. Hopefully it comes back alright.
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(LivingIVlife)
Threetree- what a terrible fall. I do hope you are starting to heal. The use of only one hand would be such an inconvenience for things we take for granted.
Keris- an endoscopy is a fast test. Don't do what I did and forego the sedative. I thought I would be brave and handle it. The only thing good for me was that it was fast and I got dressed and walked out the door while others were trying to wake up.
Emac- I didn't do the Taxol but my best friend did and she would always say her food tasted like sh...
Mel- hope you find a solution that works on your mouth sores. Sorry you are losing your MO after so many years. With me I have one main MO but mostly see or talk to his associates.
Mara- yes you love your brother and SIL . Just don't listen to their mumble on dementia etc.
Mae- I take it you are home safe and sound and enjoying time with friends.
Up here Hurricane Lee was a tropical storm with quite high winds and some rain. No lost of power. Still working on wreaths and going into Charlottetown tomorrow to get more supplies. Will take special son out with me. I find I can do whatever for awhile then rest a bit. Anything after 3pm becomes too much because of the fatigue.
Saying hello to new visitors and all you wonderful brave women ❤️
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Thank you everyone. I will just keep going along, scheduling PT after breakfast for myself and do some marching, feel like doing the bits of marching and nordic arms in a folding chair, just have to hold them up. Need to keep up with money making as my old internet billed me and I have a new internet bill due at same time, not unexpected, will make sure that my old internet is closed before end of month. No dropouts so far which is great. Need the streaming for the TV. I can make up for the extra bill for the new one with frugal shopping, really debating a stoppage of peanut butter, I cannot stop eating out of the container. Not having it would force me to make a proper dinner. One nutritious meal a day is not enough.
I don't want to spend extra money at the mall so will walk outdoors if need be or up and down parking lot. My balance is better than it was. Had it been as bad, I would have totally slipped in the mud when I got mail fixed t he other day. I am making good progress with PT, found a better way to get into cars. Put butt in first and bring legs around while seated, much quicker for me. Laundry is in the dryer, another load to be done of clothing. Also thinking about breakfast, I do have some frozen stuff in freezer for a long time, sausage or chicken dog I think, cook then grind those up, keep in fridge to go with beans or whatever else I am eating. I am going for more canned veggies than just beans. Need shelf stable, freezer too tiny and no room in the apartment for an extra freezer.
I decided on the giant sausage, defrosted in microwave first and boiled next. Once they cooled, broke them up into several pieces. I will use up in four days. Probably go in the chopper most of the time with eggs. So breakfast was the small piece of the sausage, chopped first then 1/4 cup beans, small handful of shredded cheese and wheat bran for more fiber. Two eggs and blended it all together. Cooked in frypan for a couple of minutes. Seasoned with salt, 1 tsp of garlic and 1tsp of steak. I small spoonful of mayo to bind. It certainly does not look the prettiest, brown from the sausage and beans but it does taste good to me. On the peanut butter front, decided on 2 tbsp a day in whatever that is made up of, whether every meal have a tsp or whatever. Figure taking it totally away would be difficult for me.
I am in everybody's pocket who needs me and wishing everyone a good day.
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I had an endoscopy and it was OK. I have a terror of having my breathing blocked (from childhood abuse) so was really scared. The last thing I remember was thinking that it would be better if I helped swallowing it. Then I woke up and it was all over. I wouldn't be scared to do it again.
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