De Novo Stage IV
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I wasn't sure where to post but since being De Novo decided to share thoughts here. So my DH said to me "Does everything have to be about cancer". Yesterday I was taking that awful prep for a colonoscopy this morning. Without being too graphic, I did have an issue, where an inflamed red lump was present, which is a new issue. With having bouts of constipation with I/L, I have irritated the bowel, via straining, etc. However I immediately came to the conclusion this red lump, is cancer. Hence I ruminated, looking up all sorts that mets spread to anal/colon area to 3am. So exhausted for the procedure I questioned the need to being knocked out, LOL. The Gastroenterologist met with me afterwards. A+ exam (good prep, no areas to be concerned except mild internal hemorrhoids). I know TMI... I guess the point being, does anyone else automatically bring all medical scenarios back to cancer?
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Tinkerbell, I’m sorry you had such a scare. I think it’s totally natural to think something out of the ordinary is cancer. After all, we are metastatic, so who knows where it will go? I think you did the best thing, got it checked out.
For me, if I have an odd symptom, I think about it being progression but don’t dwell on it until I have testing. I think the reason for that is because I have so many tests that fail to see my cancer that I am sadly thinking I won’t know it’s progressed until I have symptoms.
I think the best thing to do when something crops up is do exactly what you did. Your husband can’t relate to the fear because he doesn’t know what we go through. I hope he can try to understand in the future.
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KBL: Thanks for the validation. This is what I love the most about this thread. I know my DH means well. He truly doesn't get it based on denial or whatever. My approach is no judgements just love. Regarding having so many tests that fail to see the cancer I have a hard time wrapping my mind around this aspect. What a quandary, how nerve racking. I guess staying focused on how you feel, function day to day. We keep on..
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Tinkerbell, You are not alone. It came up again recently on the "You know you're a cancer patient when..." I call it cancerchondria, and mostly I keep those temporary worries to myself, because...I like to overthink things in peace, lol. I think it's to be expected, and we just have to work through it. And no, he probably won't get it.
Note: My hubby does get it. He lost his mom to bc years ago. No need to worry him with every passing anxiety.
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SeeQ: Yep. I had a case of “cancerchondria”. I read my colonoscopy report and the recommendation was to schedule an appointment in 10 years. I recognize it was based on the lack of findings. However I felt good not feeling like a cancer patient in that silent moment. Then later on I projected well if I survive. DH read the report and said glad that is over and didn't even pick up on the recommendation. Oh well. Regarding your DH I feel for him, his mother and now you. I understand why you want to lesson his emotional burden.
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I am not overthinking at this point, but I am having some issues. In the last few weeks I’ve told my husband that no food sounds great, but I know I need to eat, so I have been. My issue is the past few days I’ve felt no desire to eat, and when I do, I get horrid nausea. Now, I had nausea for eight months before we found the cancer in my stomach, and I never threw up. Yesterday, I felt like I was going to. I was close, but thankfully, the feeling slowly dissipated.
Last night at dinner, I just couldn’t do it. Even the potatoes, which I love, didn’t sit well. My husband has flashbacks of me not being able to eat and losing so much weight. I lose weight very quickly if I slow down with my eating. I’m trying so hard. I know I have to eat, but sometimes it’s really difficult. I have been sitting here in bed on my phone trying to work up an appetite. I am going to drink a Boost because it has protein I so desperately need. I always feel sick after I drink it.
If it doesn’t get better in the next week, I will call onc. I sometimes go through spurts of this. I have a small sliding hiatal hernia and supposed gastritis, which, thankfully, I’ve never had issues with, as far as I know. Who knows if one of those is the issue rather than the cancer.
One of my tumor markers has risen slowly for the past four months, and since that is the only thing I can truly count on to figure things out, I’ve been keeping an eye. It’s risen from 99 to 115, so not a huge jump over those months. It was a high of 220 when I started.
I hate that my cancer is not straightforward and makes me have to jump through so many hoops to figure things out. This is why I’ve been saying that it’s going to take symptoms for me to know if there is progression.
I’ve been watching my platelets too. A few times they’ve dropped into a low normal range. I haven’t told anyone that I see that because it is still normal. Also, my anemia has been stable the whole time, thank goodness.
And I can’t get my stupid thyroid to behave and stay in range.
I’m whining. I just need to say how I’m feeling, and it’s so hard. My husband is the only one who truly knows what goes on and how I’m feeling, I feel bad about this because it puts a great burden on him. Do any of you do that and don’t tell other family how you’re truly doing?
My sister-in-law is so sweet. She calls multiple times a week to see how I’m doing. I sometimes tell her how I’m feeling, but she always comes up with an excuse of what it could be or tries to discount it because she can’t stand the thought of me dying. She and my husband lost their mom to lung cancer. She survived three years after a de novo Stage IV diagnosis.
Wow, sorry my post is so long. You all are my great support system. I appreciate all of you so much.
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KBL - I'm sorry... that you're feeling so bad, that it isn't clear what's causing the problem, that your type of cancer doesn't show on the scans, but mostly for the worry. No, you're not overthinking, and it sounds like you're doing the right things. I might call the onc a little sooner. Maybe something to help with the nausea would allow you to eat a little? Maybe they'll have another idea. Sending hugs and hoping they make you feel a little better.
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KBL, I'm so sorry and concerned to hear that you are feeling unwell in so many ways. Though I think "overthinking" can be an issue (at least for me), it doesn't seem to me that this is either overthinking, or whining. From what you've said before about past episodes of nausea, lack of appetite etc. it seems to me you know your body and are right to think something is amiss. So I would agree about asking the onc sooner rather than later. I hope you find some answers that bring relief, as I recall you've also been dealing with joint pain lately. It suspect that, understandably, it all adds up. I do identify with the issue of sharing this with family (or even in my case a couple of dear close friends who kind of want to know every ache and pain). I'm a lot newer at this, and am always looking for a balance between the comfort of talking through things and the somewhat competing comforts of not worrying others and also having parts of my relationships that involve the me that is not cancer. hugs and prayers.
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KBL: I'm so sorry to hear you are suffering. You are such a caring individual. I would hope your providers or care team, will come up with a plan to ease your situation. It's bad enough to deal with the known of MBC but the unknown, in your situation, is overwhelming. I'm not that familiar with ILC. Nevertheless, It sounds like you are on top of things and listening to your body. FWIW I have a sliding hiatal hernia and gastritis. I had several symptoms that you describe but diet regime and OTC medication has resolved for the most part, but periodic episodes flare up. Are you taking anything for your symptoms?
Regarding to share or not share with others is a slippery slope for me. I'm an introvert, so my "silence" is a norm. Keep us posted.... I hope you feel better and stay hydrated.
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Thank you, SeeQ, prairiesea, and Tinkerbell for your kindness. I was able to keep the Boost down and had a piece of toast with it, although the nausea was immediate. I do have medication for nausea, but I have issues with constipation, so I don’t take it. She gave me one that doesn’t cause constipation, but I haven’t tried it. I keep forgetting that I have medical marijuana that may help. Lol. I just took a little CBD tincture and a quarter of a gummy. It takes about two hours to kick in, so I’ll let you know if it helps.
I am hoping that this is just a flare and it will ease up shortly.
Regarding the joint pain, I am trying to do light exercises to keep my muscles engaged. I had a Total Gym sitting in my garage and have pulled it out. I used it three times last week, and I think it’s helping, but I haven’t done it this week yet due to the nausea. I usually walk a mile every day as well to keep my hips moving. It’s been pouring all day, so no walk today.
Thank you so much for the hugs and prayers. I will keep you updated on whether the medical marijuana helps. I hope so. I don’t take too much of it because I don’t like the head feeling I get, but the CBD doesn’t affect me like that, so more CBD and a tiny bit of THC hopefully will let it back off.
Sorry you have the hernia and gastritis as well, Tinkerbell. I’m almost thinking that’s what it is right now. That does sometimes cause issues. That’s what I’m going to assume it is for right now.
I definitely will call onc by Friday if it’s not subsiding.
Isn’t it funny I feel worse for my husband than I do me? Isn’t it our nature to worry about everyone else? I can’t help it.
Thank you, again, for being here for me to talk to. Hugs to all of you.
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KBL,
My dining room table is covered right now with various anti nausea drugs because xeloda is giving me loads of issues with nausea. One drug that is not typically used for nausea but which seems to help me is Ativan. I take it once or twice a day when I feel nausea creeping in. It doesn't seem to cause constipation like other drugs (such as zofran) do.
Also, if you have skinny wrists (I do not) you might invest in a set of Sea Bands (sold at CVS, etc.) that you wear on your wrists. They are supposed to hit your pressure points to relieve nausea. I used them while on my original chemo in 2004, but when I tried again my L wrist is to large now and it caused too much pressure and I was afraid of further issues.
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Thank you, BevJen. Does the Ativan make you sleepy? My wrists are quite skinny, as I can’t put weight on since I lost so much. I will look for the bands and try them. I would really like to have something help naturally, so that’s a good option. I appreciate it.
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Thank you. I needed to read this right now
Some days are just so hard not sure if I feel worse for me it my husband
I’m trying to read all the positive posts s c dx the advances / drugs in the pipeline
Prayers and positive prayers to all living with this insidious disease
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KBL,
I think that Ativan affects different people differently. I take a very low dose. So I don't find it makes me sleepy, but it does bring my stress level down a notch.
Sea Bands are also available on Amazon if you shop there.
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I'm so sorry, KBL, that you are having pain and nausea. I hope the CBD helps get that under control and helps you sleep. You are always so kind and generous with encouragement when others are feeling the struggle. May your queasy stomach calm and your joints loosen up. When I'm taking THC/CBD products, I like to watch YouTube videos of Reiki/ASMR sessions. They're dull and quiet and help me sleep.
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Thank you, BevJen. I will definitely look them up on Amazon. I was offered Ativan when I very first saw my onc, and I told him not yet. I will look at it again and talk with them about it.
NineTwelve, that is very sweet of you to say. I find so much support here, and I’m so glad you feel that support from me. I remember when you were going through all the stuff with SSDI. I was so mad for you that you had to go through that.
I will look at the video tomorrow. Thank you for posting it. There are at least two to three nights a week where I wake up and cannot get back to sleep for hours. I try not to stress about it because I am not working, so I can take naps, but I’d rather sleep straight through.
I will keep trying combinations of the CBD and THC to see if it can be effective as well. I don’t take it every day. When I first started, I took a half a gummy and thought, oh, boy, too much. It’s hard to get the right combination right out of the gate
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KBL, I think medications (lower rbc) and now wearing masks, our oxygen level in blood gets affected, so part of waking up during night sleep could be related to that theory (my opinion!). A therapist suggested deep breathing before sleep can help a better sleep, I have tried breathing exercises before night sleep for about 3 months and I guess I had less waking compared before.
I second 9-12, you always support everyone, sweet lady (((hugs))) and provided this platform for us to share tears and laughter.
I am in a 3 hour waiting for nuclear bone scan, listening to radio, interesting that the song “big girls don’t cry” was on air!!! Matches with my feelings these days.... Long day, hopefully the results will be good 🙏
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Good luck Snow Drop & I hope things get easier, KBL. Keep us posted! 🙏🏼💗
I had a frustrating morning as I was scheduled for my ovaries to be removed but (after 5 hours in prep, leaving my house at 3:30am) the surgery was canceled due to low WBC. I’m on Kisqali & I think it’s going to be a struggle to keep my counts up. I stopped it last week in preparation for surgery but they were still under 1000. We are going to try again later in the month.
Trying not to be discouraged but hate having a setback this early in treatment. Thanks for the vent.
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NCYogi-That sounds extremely frustrating. It would be hard enough to gear up for the surgery but then to have it canceled due to low blood counts...aargh! Hang in there. Hope it works out for later this month just so you can be done with it.
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NCYogi - I had something similar with who knows how many people down the line forgetting to inform me that my surgery time had changed from 730 am to 330pm and after all that I was STILL the last one on the table (before a long holiday weekend too!). It was so annoying and I had even spoken to the surgeon the night before. Also - my surgery was moved 5 weeks due to low counts the month before, so they gave me some Filgrastim party favour injections to give myself a few days before surgery to get the counts up. Not fun, but they did the trick. Maybe check with your MO if something like that (Neulasta,etc) is an option to just give the WBC a kick to get you through surgery.
BTW I LOVE not having Zoladex injections anymore!!
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Snow-drop, thank you so much, and hugs right back to you. That’s a great suggestion. I’m a shallow breather by nature. I will try that tonight as well. I took Zquill last night. I slept straight through. I just can’t take that every night.
The nausea is still here, but I had more energy, so I got some things done. Please let us know how your bone scan turns out
NCYogi, thank you as well. I’m so sorry your surgery was canceled. I don’t even want to say the words that would have come from my mouth. I had a hysterectomy in 2012 before I knew I had cancer. I didn’t have my ovaries taken. If I knew then what I know now, I would have had it all taken out.
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Thanks guys! So happy to have y’all (I’m a southerner) on my team. I’m trying again on the 16th & having my bloods checked beforehand to see how I’m doing. I don’t want anymore surprises at the crack of dawn. Thanks for the tip about meds. Good to know!! Wish I would’ve know that this morning. I might have given myself the shot on the spot.
Hope you sleep well tonight KBL! 😴😴
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Thank you so much, NCYogi. Thankfully, falling asleep isn’t an issue. I did take some CBD and a little THC gummy. I’m a lightweight. I only do a quarter of a gummy. Lol. It does work in making me sleepy. Fingers crossed.
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Regarding the ovaries, I still have mine and take zoladex injections every 3 months. I had a partial hysterectomy and kept my ovaries back in 2016. This month my MO decided to take me off zoladex to see if I'm post menopause. I go for lab work on Friday. When I was first diagnosed my MO was against having the ovaries removed. Here I am 2 years later and wonder if that was a mistake. I can say this month it's been interesting as far as my hot flashes and being emotional so who knows what is happening. I got upset this morning over things that typically dont bring on emotion. Thankfully no one was around to see me become so erratic... NCYogi, please keep us updated re the ovary removal. I may be heading in this direction...
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That’s very interesting, Tinkerbell. I kept my ovaries as well in 2012 and was never offered Zoladex. I didn’t even know about it. Since then, they can’t even find my ovaries. They’ve shrunk. I have an appointment with my old GYN ARNP from the practice where I had it done on the 18th of this month. I’m going to reestablish with her because I loved her. When she moved to a different office, I made an appointment but canceled. By the time I wanted to go back to her, it was when COVID was bad, and they weren’t taking new patients. She’s just moved to an office right down the street, so I am going to reestablish. She knows nothing about what’s happened to me since I last saw her.
If you have any questions I should ask about my ovaries and whether to do something about them, please let me know. I have no idea what I would do since they can’t see them. I may ask for a vaginal ultrasound to see what they see. The GYN I saw last December gave me a script for one, but I didn’t think it was necessary.
I’m sorry you are suffering with the mood swings. Sometimes when I’m off my Ibrance for the week, I get a little rough around the edges. I just tell my husband that I don’t meant to be so rough, I just can’t help it.
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I decided to go for lab work today rather then wait tomorrow. I received my lab work results this afternoon. MO messaged that I'm officially post menopause. Hence I no longer have to receive the Zoladex every 3 months. KBL: In the last 2 years (mainly the first 6 months), MO was checking FSH, estradiol and LH. Since you had a partial hysterectomy in 2012, It's highly likely you are post menopause. I recall the MO stating after a partial hysterectomy, the median is @ 5 years for the ovaries to shut down. Plus I'm on a AI that also aides in reducing circulating estrogen.
MO did say the hot flashes, mood swings, etc., will gradually lesson. I opted for no medication and supplements. So I guess it's going to be a "wild ride" the next few months...
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I’m 60 now, so I’m sure I’m post-menopausal. Sadly, I started having major hot flashes within about a year of my hysterectomy, and I still have them day and night. It’s been many years. The Letrozole didn’t really make them worse because they have always been bad.
I’m so glad you don’t have to take the Zoladex anymore.
The one thing that has been better since was the mood swings. I had PMS when I had my period. It was like clockwork every month. My poor husband. As soon as I had my hysterectomy, they were gone. Good luck, and I hope you don’t have hot flashes as long as I have. My sister and mother had maybe two total. I was the lucky one to have them semi permanently
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bone scans done, something new in my femur was reported, so disappointed again. Had an interesting meeting with my MO today. I mentioned what radiologist saw and dr google’s, she replied cancer is everywhere including bone marrow [microscopic cells that cannot be captured] medications try to prevent cancer colonization, she referred cancer cells as faulty cells that in healthy bodies those cells will be killed [by immune system] but in my body they stay alive (which is not concerned) and build colony (that is the area of concern)... I hate this disease.... she also said lesions in my body are solid like turtle that is why they haven’t shrunk. I think now I understand stable vs NED/NEAD. So X-ray of my femur then wait and watch game. The stress is not going to be over...
A question for all, have you felt fatigue after scans? I described what happened to me after oral+iv contrast scans (chest heaviness, burning, weakness) she said these are all showing severe allergy to contrast.
my MO is against the term‘terminal disease’, she said over 20 years ago might be but specifically recently many lines of treatments have been added, more medications with less bad side effects and better effectiveness are available than 20 years ago so MBCers are given more years until new lines add, we [scientists] try hard to make changes to treat cancer as a chronic disease with greater chance of remission. I like that, this opinion from an oncologist gives me hope, I thought I’d share with you.Have a good weekend everyone.
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Snow-drop, thank you for sharing
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Snow-drop, I’m sorry about the spot on your femur. I have the cancer throughout all of my bone marrow as well. I have never been NED. I guess I could say I think I’m stable, but hard to say in my situation.
I have not had what you describe after a scan. That would be so scary if you’re allergic. I would definitely take precautions in the future.
Let us know what the X-Ray says. Hugs.
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