My Husband, My Life, My Love, My Family, My Cancer
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Good luck Frisky, hope everything comes up for you soon so you can do some walking. Glad you are also thinking and feeling like your old self.
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Tanya, thanks for the blood thinner tip, good advice.
Well, I was discharged yesterday after my 1st of 3 partial brain rads. Unfortunately, I puked in an empty grocery bag on the way home and the vomiting continued all night. WARNING, LITA MOMENT.... I woke up sick again, from both ends. So, looks like I’m washing sheets this morning.
This sucks!
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Oh Mae~I am so sorry that you’re going through this. I am glad you’re home but damn you need to catch a break. You’re on my mind and I keep checking to see updates from you. I am sending you much strength and vibes... Your poor DH must be worried sick. Love to you!
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Mae- So sorry you are going thru all this. Hugs.
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Aawww Mae, you definitely do need a break! Let's hope things settle down for you and you can at least manage to get some fluids down.
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Oh my poor Mae, that is so awful for you. Did not know you were having brain rads as well as the earlier surgery. I am with Mel, you need a break from all this stuff. Yes, being home is great but now to have to deal with that mess is terrible. I am so sorry for you. Wish I could come and take care of you and let you rest. I hope you have been prescribed some nausea meds and loperamide or some other drug to stop things and let you get some well needed rest. This definitely sucks.
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Illimae, I have been following your posts with great concern and anger at your and our fkd up predicaments, where the cancer it's not the leading actor in our suffering, instead it’s the general, expected, run-of-the-mill ineptitude on the part of our care providers. I hope you rebound stronger than ever.
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I'm really sorry to see that you are still having such a tough time Mae - you are one strong lady.
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Mae, still sending my healing energy over to you and lots of hugs too. In your pocket, even though you are at home.
I am taking a quieter day, no sidewalks I feel the need to conquer. Just getting on my treadmill but not doing my usual 3.0 mph but took it down to about 2 to 2.3. Really tired today and figure slow is better than none.
I hope everyone who is dealing with illness gets better soon, especially mae, but everyone else too.
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Thanks everyone 🙂 Fortunately, it’s only 3 days of rads and I got them to call in anti-nausea meds this morning, which helps. February is usually a great month for me but man, this year it’s been miserable.
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March will be a better month for sure! Sorry you have to deal with all this 'mae. It astonishes me how much the human body endures. Hope the next few rad sessions are better and you can put this behind you soon. keep hydrated if you can tolerate drinking. Is the swallowing any better
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Hi, everyone. Just stopping to say I haven’t been participating on this thread as I planned because I feel so lousy. Day 7 of the trial still queasy, hardly eating, diarrhea. I’m weak. I called the nurse and she advised me to take zofran and change Imodium To lomotil and get electrolyte drinks. So far no change. I think I will refuse today’s dose of neratinib. I think the trial dose is too high. They can kick me off if they must but this is gonna kill me.
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Shetland, for what is worth, 2 patients died on the first and last clinical trial I underwent...the fabulous and exciting new Ibrance. No matter how much I complained about the unbearable SE, it fell on deaf ears until people died. Just a reminder that if these people knew what they are doing the survival rate wouldn't be 2%....listen to your body...all they care is FDA approval and how much money they're going to make....we are an afterthought...irrelevant...as mice...and yes they overmedicate us because since these medications are useless they hope to get a response by increasing the doses...it’s so fkng sad!
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Mae and Shetland sending you both love and support!!!
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Illimae— continuing to send healing vibes to you. Hoping the nausea and big D are a thing of the past very soon.
ShetlandPony— sorry to read of your issues. After getting rads to my hips that went thru my bowels, I fought diarrhea for weeks. My med team was able to get it to calm down with Welchol. It’s a repurposed med used to treat diarrhea from rads and/or chemo. Thought I would share should it be helpful to your situation. Welchol was originally a cholesterol med but was dropped by patients due to constipation. I took 3 pills with breakfast and dinner. Big D under control after just a few days
Mara— hope you are feeling better after your fall So sorry that happened to you.
Waving at everyone.
Scans for me tomorrow— my first bone scan. It will be my baseline moving forward
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Dodgersgirl, I am feeling better. Worst I got was a sore arm and scraped knees, no broken bones. Glad to hear your Big D has been brought under control. That was awful for you.
Shetland and Mae, you both have been through so much and as I said earlier, I wish I could come give people a hug with everything going on. It is awful. It would be enough to make me say forget it. That you keep going is amazing and inspiring. Wishing you both the best.
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Right, on the positive side... I think some of us need a wee booster... had a shocker of a cold last week which floored me completely and did nothing at all whilst feeling very crap.
Sunday walked the dog 3 miles. Today went to the gym and did 25 mins walk jog on the treadmill plus some strength stuff, just easing in so no swimor sauna today. Tomorrow walk the dog on the beach, probably in peeing rain and a gale. Thurs coffee with my PE retired friends. Friday Yoga at Maggie’s.
Last week I thought I was going to give up.... not now!
Scan on March 13th, so scanxiety here I come, but the next day will be better.... until the results...
This is the up and down of our thing. Roll with the punches is definitely a fitting phrase for us I think!
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Mae, All these SEs and complications have to come to an end. Sometimes it’s too much to take. I am hoping things turn around soon.
Shetland, A clinical trial should not be making you so sick. If the team doesn’t make adjustments for you, maybe it is time to move on. QOL is so important.
Hugs and prayers from, Lynne
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Hello Lovelies. Mae~Thinking of you tonight and wanted to check in. Shetland~I am so sorry that you’re having. A hard time with that clinical trial, sometimes I think they think we are test subjects and become less human with these trials. Keep a close eye and listen to your body. Can you take a break from the trial and still be apart of it?? I am thinking of you as well.
Karen, Philly , Chicagoan, Lynnwood, BevJen,Jen, Moomala, Candy,Mara, runor, legomaster, Tanya, Dodgersgirl, and sweet Lynne....frisky...Sondra...... so good to see you all. It helps to open the living room door and have people to talk to. You are special people.Honoring the Lita moment. Would always love how frank and honest she would be about her side effects She never held back. I was honored to online know her.
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Shetland-You are in clinical trial HELL. Thinking of you lots and wanting relief for you ASAP.
Moomala -Celebrating with you the results of the scan! Yeah! Now you really can have a breather...
Mara-oh, so sorry about your traumatizing fall.....(or "digger" as my Southern husband would say). Sounds as though you are recovering and thank goodness for that.
Mae-OK, enough. it's time for you not to be attacked by medical mishaps. Time for healing only.
Holding all of you in the light...
I scanned today; now in the horrible twilight zone of waiting for results. By the way, I made the mistake today of telling the PET scan tech that I accidently ate one half of an orange slice this morning while packing my food for after the scan. My advice: If this happens to you TELL NO ONE. I ended up having to wait three hours before the scan because they were freaked that one half of an orange slice would raise my blood sugar enough to skew the results. I have a decent understanding of physiology. I can't say with 100% certainty, but I would be very surprised if my glucose would be affected much by one half of an orange slice...just sayin...
May the force be with you, everyone
Love Mary Jane
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DodgersGirl - the bone scan is kinda fun - like being in a giant Xerox machine. Careful of the scan bed as its really deep - ask for pillows and props if needed.
Mara - I am glad that you got back up and back on the horse. Who cares what you look like so long as you are walking - awesome attitude
Karen and MJ - best of luck with scan results and managing the scanxiety
Feeling in the dumps again, I swear coming to the last few days of the drug cycle its like I get the same mental PMS issues I had before, but without the actual event. Maybe its cabin fever and the weather, maybe its the futility of my job, maybe its reading about so much suffering and fear in the world, maybe I am pushing too hard with rehabbing. I can't wait for my MO appt on the 27th so I can find out what the scan showed for the left (non-cancer) side. There is something going on over there with my left leg that is causing it to be rather tight in the quads and achilles tendon, but that was going on last summer too. I don't know anymore, I just want a definitive answer about what is going on down in my lower back/pelvis and a plan to get it to stop being such a problem.
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MJH~I am with you for the waiting for your scans. We all know how that is Way too much to deal with. Good to see you always. Think of you often.
Mae~thinking of you as well. Hoping each day is easier.
Moomala~Again. Congrats. So glad... 🤗
Sondra~ I hope you get the answers you need about your leg. It’s so frustrating when you’re positive it’s there. But getting them to listen is another story. Hugging you!
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Ok ladies I just did something I wonder if was ok to do.
I have a FB friend that went thru breast cancer 3 years ago. Triple Negative. Bilateral mastectomy. Chemo. Rads. She writes beautifully---kind of like our Runor. She posted a long, beautiful post on FB about her experience yesterday with yearly follow up, scans, and MO visit. (She goes to a large cancer center) She wrote of the scanxiety, the other women in the clinic awaiting their scans, etc. This woman is well known in our community and has some powerful friends.
I was moved by her post and thought "Hey, we MBCers go thru this experience every 3 months". So I posted a response. Congratulating her on clear scans and wishing her well. BUT THEN I COULDN'T HELP MYSELF--- I posted how us MBCers have this fear, anxiety, this same hospital experience EVERY 3 MONTHS. I couldn't help myself. Thru her post and the comments, I can reach and educate others about MBC and what WE go thru ALL THE TIME. People need to know some of what we go thru. DON'T FORGET US-- THE STAGE 4 LADIES.
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Candy- I think it was a fine thing to do.
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Candy,
Having just had a CT scan this morning, I think it was fine that you did that. Even the nurse that gave me the IV stick said -- wow -- you've had a lot of scans. Um, yes. And I still have an MRI on March 5, for the interventional radiologist, because my doctors don't talk and therefore don't compare which scans I should be getting for the best picture of what's going on in my insides.
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BevJen, how often do you get MRI? I hate having so many scans but gosh every time a new pain pops up in my back I get the feeling I should have another MRI.
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Moomala,
Well, I'm still in the setting up stage of timing of these scans. I went from no scans from about 2007 until May of 2018 then a flurry of scans in May 2018, October 2018, and then May of 2019, when they diagnosed my liver mets. Then I switched MOs.
I started Ibrance in July 2019, so my first ct was in October of 2019. Today was my second four months after my first, and it was because there's been a slight shift in TMs.
Long explanation to get to the MRI stuff. I had microwave ablation of my largest liver lesion in July of 2019. The interventional radiologist said that for his purposes, an MRI of my abdomen and liver was best. So I had one in late August 2019. Next one was in Dec. of 2019. And that brings me to this one in March. He wants me to have them every 3 months, and that's also when I see him.
Of course, the whole scan thing is so ridiculous. Mind you, I see two docs within the same large hospital. My medical records are all on the portal, including when my tests are set up, etc. One would think that maybe they would communicate about all of this, and say -- oh, maybe we should just do the MRI this time? But no, since it's sort of standard protocol at the breast center to do these stupid CT scans (which, for me, have been equivocal at best in showing any bone mets because I'm lobular), we do both the CT and the MRI.
Also, although the radiologists do report on what they see in my bones on the MRI, I'm not specifically having them for that reason. It's just a better view of the liver for the IR.
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Candy, I see nothing wrong in expressing what we go through with MBC and that if never stops. That is not obnoxious, but educational.
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Yep Candy, I’m with the others...a wee reminder will not hurt. Whilst we don’t want to terrify our Primary peers we do need to allay their fears and keep awareness high that we are here....and still getting on with life?
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Exactly right Karen. People should see us getting on with out lives as well as being aware that MBC requires treatment for the rest of our lives.
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