Mom to 2 amazing kids, wife to the most fantastic husband I could ever dream of. dx with breast cancer in 2017. Living with incurable stage IV MBC since 2021.💙
Feeling terrified. I'm under 105 pounds. Body is eating itself as I am not getting enough intake due to chemo and side effects. Working with nutrition. Mental health with the bi polar disorder/chemo/cancer combo is a train wreck right now.
Chest CT at 8:15 this morning feeling exhausted and nervous. Still having mild shortness of breath, fatigue, increased mucous/phlem and increasing rib pain.. 🤞 for not worst case! Wish me luck please.
I routinely ask myself what I am doing wrong...When so many people with cancer.. MBC etc continue to work. I do 1 family outing day or chores, run a few errands, dr appt with my husband and I'm trashed! Depending on how long the day and exactly what we did sometimes for DAYS! 😩
Does anyone else ever feel guilty for buying themselves new clothes or anything? It feels like as waste of money me not knowing how long I will even wear it etc. And yet we deserve comfortable sneakers and an outfit to feel good in! Like playing devils advocate with your own mind
@CancerCanuck
I say whatever is within your means to pamper yourself do it! Because you deserve it! Make yourself as safe and as comfortable as possible.
I've never been a patient person. One of my many personality flaws 🤣 but I would swear the second time dealing with cancer and especially IV chemo has left me at negative patience!
Update: chest CT normal, no evidence of metastatic disease! Or viral or bacterial illness. 🤗 Doesn't explain my shortness of breath, fatigue, mucous/phlem. So my thoughts cancer/chemo still to blame-immunocompromised lead to new development of allergies! pcp appt @ 10 today.
Thanks so much everyone for all the support and well wishes. I am hopeful with my husband's support and the nutritionist we will get my weight up. It's just very trying with the lymph nodes next to my throat and slew of GI issues caused by chemo DRIED OUT everywhere!
@kate_rackham
So I don't think I can sign. it doesn't like my USA zip code 🙄 so I will share it at least! Hoping this helps and Enhertu is passed in England soon! 🖖
Well I am back home. Thankfully brain mri was completely normal. That is a huge relief. The neck ct shows some new scattered enlarged lymph nodes bilaterally in the neck area. I can only assume this is the cause of all the new nerve pain I am experiencing in my neck and shoulders
@BlackSwanZA
That we think to be a problem but aren't 100%? Yet. They were able to get INS to cover neck mri so we can see! That is now 6/11 so very soon! Then we will discuss treatment. Pain over the past 2 months has decreased considerably! Just can't do much of anything with left arm.
Neck CT ordered. Hopefully it's nothing serious. I'm hoping it's not cancer related. Could be from an injury 3 weeks ago. In which case I hope it's mild and can be healed.
@Journeyw_Mari
I eat very well (minus when chemo doesnt allow) follow with integrative and nutrition. I do my very best to eat as healthy as possible. Whole foods water hibiscus tea etc thank you
@A_Research_Guru
😲 so sorry this sounds absolutely awful! Very scary stuff. So sorry you are dealing with this. I hope you have good support and are well taken care of. Wishing you the best in what is certainly a scary time with a lot of unknowns ahead 🩵
@MancusoJea2107
Marijuana is not helping my appetite I started smoking again late last oct. It doesn't help my mental health either odd IK most people say it helps! It actually fuels more depression and paranoia in me. A CNS depressant isn't good for me. Thank you for the support! Ginger is good
@Ale_R_Flaca
Brain mri was normal, neck ct shows new enlarged lymph nodes affected by the cancer. So I can only assume they are pressing on nerves and causing this horrendous pain. I just got home around 5 today. Thank you for asking. I hope you are doing better!
@CareyPhoto
Not fair to treat ourselves this way is it though? We just never know how long we have. But does anyone? Our time is limited differently with a very different mental perspective than someone who could die in a car crash tomorrow. Doesn't mean we don't still need things!
@emtrrt_cat
Magic mouthwash. It's lidocaine, benadryl and maaloxx. If ins covers it you get it from pharmacy as magic mouthwash. Mine did not so I had to get Lidocaine prescription and buy the other 2 parts over the counter and mix myself.
My better half. He hasn't left my side since we got here yesterday at 3. We are still waiting for MRI. I will share scan results once is all back and we've talked to Dr. Thanks everyone!
@Ale_R_Flaca
😭
After we did the liver resection it showed up in lymph nodes in chest.. insee onc Tuesday bc i am having shortness of breath just like when they 1st showed, enhertu cleared them up but I'm not sure my chemo break is doing that justice 🙄 I will think positive for us both! 🫂
@NordicMom8
Def at least salt water rinse for now. If they say its ok. Also in case this happens again. Since my ins wouldn't cover magic mouth wash. They would cover liquid lidocaine and buy over the counter maalox, liquid benadryl mix 1tsp of each and that is basically the mouth wash!
@kate_rackham
It's ok to feel sorry for ourselves sometimes isn't it? I know I do. This disease that is killing us, it's not who we are and its a huge burden it changes us in so many ways it's so unfair. You deserve to feel Kate. ALL feelings are valid!
@kate_rackham
@alienbrit353
I feel the same way Kate. Our kids were 2 and 5 at primary diagnosis. 5 years later diagnosed with MBC. They are now 9 and 12. Your girls are so close in age to my kids.
You know I would like to hear more about the lower class struggle. Perhaps we are just in a unique situation. But we are pretty much lower class, struggling to pay our bills. I am unable to work due to MBC. We make just enough money to stay on medicaid (which I am so grateful for
@emtrrt_cat
When I start loosing hair after any chemo my entire scalp is super tender and painful. But once it's basically gone and not falling out anymore it stops. But I've found that it seems there is nothing impossible on the realm of cancer and chemo!
@snufflewort
I feel for you! I am also extremely sensitive to pretty much everything. Soap, benadryl, anything derived or from bovine products, adhesives anything that affects the brain chemistry is any way.. So something as nasty as chemo yea I get it's rough for everyone..but shit! Screwed
@BlackSwanZA
Even ensure clear has whey I'm it and I am unable to have bovine products. Nutritionist suggested adding peanut butter powder to things. Amongst other things. Thanks!
@katievscancer
@NinaWil83565015
@ThanksCancer
Yea this treatment for the rest of our lives thing is HARD AF! I'm going to be depressing here but have you ever had days where you feel so bad you wonder if you should just stop treatment? Enhertu was SO HARD for me!
@lindabean2002
This is recurrence for me. I was stage 1 2017 when it comes back it's stage 4. I haven't done anything wrong except be one of the unfortunate people who have a recurrence and remission with stage 4 secondary breast cancer is uncommon.
@emtrrt_cat
Ridiculous. Yes use cautiously absolutely! However if you tolerate it well AND IT HELPS whether sleep, anxiety, nausea or best of all.. all of it. They should give you enough per month to be helpful. The nerve of some drs. If it helps the pt they need it. I understand the risk.
@kate_rackham
@maggiesmanc
Was it helpful? We've been pretty upfront with the kids through this since the beginning. We don't go into great detail like with drs. But we explain something and keep them realistically up to date uk. And they both see a psychologist. I think that helps them too. 💙
@Dragonflylady06
@ThanksCancer
@BlackSwanZA
Sounds reasonable! I do not Like sativa makes me jittery and brain go crazy. Lately I've been 2nd guessing my decision to use marijuana I'm almost certain it is causing me depression and paranoia and increasing my anxiety. I'm not sure it's doing me any good. 😔
My daughter (with a little help) made me a beautiful necklace. This was part of our last day of summer yesterday b4 1st day of school today 😊 I absolutely love it 💞 my favorite color is blue and I love blue/pink/black/silver together made more perfect bc we did it together ❤️
Additionally I am having pain in the right side of my neck where there are 2 enlarged lymph nodes and into my shoulder at times. Doesn't sounds or feel promising. Especially after an almost 4 month chemo break. And the right side feels different than left.
@NordicMom8
I just wish it got easier but, it's just hard. Some days more than others. You are not alone. There are some really great people on here suffering as we are and they can be supportive and kind. 💜 our situations are all slightly different. Except we all have cancer enough said!
@Dragonflylady06
@ThanksCancer
@BlackSwanZA
I just wish I needed NO drugs of any kind especially that poison they give us! My mental health is so delicate. Not that everyone's isn't! I just know I am especially sensitive to like everything!
2 hits of marijuana and I'm good But then cry and start thinking about all the sad
@snufflewort
Yeaaa... I wish someone had told me that was an actual thing! For me the pain is really pretty awful when new treatment and new hair loss starts! Hurts to lay on my head to wash my head anything really!
@ShelleyKaplar
That's wicked rough! I feel like some people get annoyed (not the really important ones that fully) that I don't really donthongs anything but I listen to my body and do my best to behave and eat and live the way it says it needs too! I wish everyone was capable & able to do this
I haven't actually cooked anything out of here yet. But myself and family are excited to try a lot of things in here! Also I just love how it's broken down. In the beginning it even explains a lot of herbs and spices and their health benefits etc. I got this through library!
@CheryleRPh2
@ThanksCancer
Yea October used to be my favorite month. My birthday, my favorite holiday (halloween) my favorite season (fall). Let the Pink washing begin..💗 bah
@Ale_R_Flaca
@ThanksCancer
@ShawnMGibson1
I swear if I see another Ohio health commercial..when cancer happens we've got you keep making plans. Or some such nonsense 🙄 like who, who is going sky diving and rebuilding a classic car while going through cancer treatment? 😂 I'd like to know! I don't know anyone like that!
@A_Research_Guru
Dexamethasone? I barely lived through 1st dose enhertu with dexa, aloxi, cinvanti. Possibly the worst 3 weeks of my life!
I demanded changes amd droppings pre meds starting dose
#2
literally made changes every single dose on enhertu! Sorry you're dealing with that!
Ok all nighter ✅️ clonidine didn't cut it in the hospital I guess.
Neck ct✅️ waiting on results
5 sticks and 2 IVs ✅️ thanks contrast I developed plebitis and had to have a new IV thank you ultrasound team now we can check kidney function later and hopefully still get MRI
@BearroristJodi
I hope the food is yummy! With lots of snacks... I like snacks. Do you have activities to keep you busy? Coloring, puzzles like word finds, sudoku etc. What about people? Are you lonely?
@kate_rackham
@navy7595
Yes! my oncologist suggested I write the kids a letter every year for their birthdays. Give the ones I'm here for but write ahead many years so they have them when I'm gone. ❤️ I also started a diary for chris keith and evelyn for later on. ITS SO HARD! 🥺
@emtrrt_cat
Maybe you will need to use nulasta with your chemo to prevent severe wbc drops. Causes awful bone pain but maybe better than potentially getting life threatening illness and other such things?
@kate_rackham
@No1bizwiz
Can you fund this? I haven't tried any recipes yet. But so cool how it explains herbs and spices and heslth benefits etc. I can't wait for the 4 of us to make some things!
@ElizabethS68
@katievscancer
I'm so happy to have hair on chemo/ treatment break! Probably bad I've done only 1 treatment in 6 months. I have so much hair! I don't want to cut it but I also don't it to long and get attached to it again before I have to lose it again at some point you know!
@stage4kelly
@UCSFCancer
@BalassanianRon
@hoperugo
Are you able to have a liver resection? I had one and so far haven't gave recurrence in liver since and that was over 2 years ago! I know we are all different but something think/ask about maybe? You are on thoughts!
@Western70122
@saramikaila
Don't sell your feelings amd emotions short. Of course it "could always be worse"
However our individual dx and situations and mental health are hard enough. Don't down play and tell yourself it could be worse. Pretty much everything could be worse. It's bad enough! 😉❤️
@NordicMom8
Yes if kids are old enough absolutely have them help. Make am assembly like out of it! The past 2 years our now 9.5 and 12.5 year olds have learned to do dishes, cooking, laundry and other chores. They enjoy helping and know I can't do as much anymore. Plus they need the skills!
@kate_rackham
Is this 1st time you've had a liver biopsy? I had one that led to our mbc dx. I hope you don't experience to much pain or discomfort and That it is over quickly.
unfortunately cancer has spread to more lymph nodes. They were able to tell me in the hospital these do not indicate infection but rather cancer. We already knew of two affected lymph nodes prior.
@kate_rackham
I am so heart broken. She was such an inspiration! I msg her just yesterday to let her know I was thinking about her and missing her presence here. 😭 You will be missed Kate! 💖 in our next lives I hope we can meet in person bc you are one cool gal!
@NinaWil83565015
@ThanksCancer
@CancerCanuck
@TheCancerSutra
I always read often just heart, Rarely tweet back. I'm afraid to say the wrong thing. I'm sensitive and assume we all are. But I find myself talking to my husband about my Twitter stage IV friends like I know all of you in person 🤣 it's hard to relate to healthy people anymore.
Becoming increasingly worried about
@kate_rackham
! I'm literally stalking X waiting for an update. Not like her to go so long without posting. Knowing she was in bad shape and going in for chemo this past Monday and no updates has me so scared for her. 💔
@BaronDestructo
@empath_angry
Absolutely the coolest thing! I love these chats! Stargate will always have my heart! I'm still slowly but surely working my way through star trek chronologically, but been missing stargate lately 💙
@BaronDestructo
Does anyone else ever have bad days where you just know if your spouse isn't literally with you all day or has to leave you WILL NOT be ok? Today is one of those days. Hubby just called off. I am not ok today 😭
#mbc
#bipolar
mental health is no joke. He is my rock & safety net!
@kate_rackham
@alienbrit353
Me too! When I found you and saw everything I told my husband wow is just like us but they have 2 girls and we have 1 of each. I was dx in July 2017. MBC 9/2021 we found it in my liver.
@snufflewort
Oooh tomorrow damn! I missed that.. well I am glad we will have updates! I hope it goes smooth as silk from a surgical standpoint. I hope you are well cared for and have a smooth recovery.
@saramikaila
is having surgery soon as well I'm not sure of the date though 🤔
@NordicMom8
I always find it so weird how you guys across the Atlantic lol have to go for labs day or 2 before treatment. I'm spoiled at my center 🤷♀️ we get labs drawn and ran on site results are back before seeing Dr, then talk about side effects labs then sent to infusion to get poisoned.
@ShelleyKaplar
@ThanksCancer
Coodlecoodleloodleoodle
Mine isn't very fun lol I think I've "spelled" it correctly for cecilia. That's confusing and a lot of vowels 🤣
@snufflewort
My secondary (MBC) was also diagnosed through an ED trip which led to imaging which let to a 6 day total hospital stay for pain management and liver biopsy for conformation. Crazy stuff! That was Sept 2021, 5 years after my initial diagnosis from July 2017.
@gofinditwhy
Thank you for the validation. I am way to hard on myself.
I feel one must be hard on themselves. If you aren't then how will you grow and improve? However often its not necessarily in a healthy way and it can be unrealistic and lead to putting myself down. Tricky balance!
@grumpy_molly
@Ale_R_Flaca
Very true sometimes the chemo isn't to blame. The pre meds and at home nausea meds can cause problems too. For example I can't take emend gives me horrible headaches, blurry vision, dizziness etc. Cinvanti works better for me.
@BethT79
@mtgreenee
MOST OF THE DAY! In between the crying. I get a few good/nice moments here and there though usually after the nervous breakdowns I'm somewhat stable for awhile. I'm so glad I have found people who understand exactly what t its like. My heart breaks for us 💔 and all who suffer
We can't make enough money to cover all our bills, food and medical, vision and dental ins and cover copays and deductibles we've spent countless hours crunching numbers we are in a damned if we do and damned if we don't ik we can't be the only ones!
What is anyone else doing to help manage neuropathy side effects from chemo? My feet hurt so bad sometimes I can't hardly stand it. I've done some research. Trying to get some support from care team. Juat curious what works for others. Thanks!
@ElizabethS68
@ThanksCancer
Has me rethinking if it's worth asking for a lymph node biopsy. I'm already having a lot of nerve pain due to lymph nodes. There are new enlarged ones in my neck now. Yuck biopsies suck!
@NordicMom8
As for ppl planning stuff w/o you it friking sucks and hurts! I am so sorry. I've been affected by that or just not even feeling good enough to do anything anyways. Both a shit. Hugs friend
But hardly enough to pay our bills and cover food at the end if the month whem food card runs out). If my husband were to make more money given his job qualifications.. we would need to make around 60k for our family of 4 to afford bills, groceries copays. We have nothing extra
Yes! Pcp ordered pulmonary are function testing may take a couple few months to get in.. but she is going to treat accordingly I the meantime! We suspect allergy/allergy induced asthma
Advocating is hard and exhausting! After a lot of talking I am in a room so far things have moved fairly quickly for an ED trip to admission. Everyone has been friendly today! Now to get some answers about this pain and migraines. Brain MRI is ordered PA is looking to add neck.
@Ale_R_Flaca
This couldn't be more true or more heartbreaking. People often think it as morbid or signs of giving up etc. But this is the reality we are living.
@dtmorgan18
Enhertu for treatment of her2 low and her2 positive breast cancers had worked very very well for me this past year that I've been on it. I have completed 11 cycles with plenty of breaks! It's harder than adriamycin or taxol was on me 7 years ago.
@NinaWil83565015
Nina I was just complaining to my nurse about that. I am on enhertu and the 1st week or so I freeze. Nothing I can do to get warm enough. She said it can affect the bodies thermo regulation. Then the 2nd week after chemo I have hot flashes.
@Ale_R_Flaca
💯 and that during and after shower crying thing with the hair is sooo hard! Don't forget you are beautiful and even w/o your hair. I can tell through your messages you are beautiful a person!
@BaronDestructo
Literally just started watching stargate Atlantis again idk if this makes 5th or 6th time 🤷♀️ eh who cares my 12 year old is all about and way less depressing than these ppl trying to run this country 🤣 but yea it's weird and crap..