My Chemotherapy Journey
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So far so good. I eat good. Taste is somewhat good. STILL No prescription meds taken. No pain/nausea meds. Absolutely NO prilosec! I don't want to develop hellish side effects like when I took imodium. I was supposed to take prilosec starting today once a day. But nope.
I will only take them if I REALLY need them. I will only take prilosec if I develop incessant dry cough or heartburn. The prilosec I got is the prescription one. Not the OTC version. Eventhough the OTC is supposedly cheaper but I got the prescription for 'free'. So… supposedly their ingredients are the same though… weird.
For now I will stick with water boarding my self with water to dilute the chemo toxicity and exercise as often for a minute or 2 with my exercise machine.
My chemo 2nd round only last for 2 and half hours today. My first one took 5 hrs. The last drip I have today was carboplatin and my nurse set it up to run for 20 minutes! LOL.
Benadryl knocked me out REAL good today. I basically just slept almost my chemo hours. I was given a cocktail of tylenol, benadryl, and nausea meds.
She said since I took my steroid today she won't give it to me. Although I also took my steroid on my first round but the nurse STILL gave me another steroid to take.
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Do you have Kaiser? That’s what I was referring to. Kaiser employs everyone from custodians to surgeons. They are all salaried, even the doctors. The hospitals, labs, pharmacies,etc. are all Kaiser. Non-Kaiser members cannot use their facilities and I cannot use any service outside of Kaiser. Kaiser is both the insurer and provider.,They have a huge presence in California and their main campuses are bigger than some community colleges. If that’s what you’re talking about, just search through their providers and make an appointment.
If you don’t have Kaiser, you simply need to find doctors who accept your type of medical insurance. You can use whatever path you choose to get recommendations and then simply call to make an appointment. Since switching doctors is far from uncommon, this should not be difficult but, again, I am not an insurance expert. If you’re comfortable naming your insurer, maybe others who have the same insurance can guide you through how best to handle things. Take care.
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My, my. Double whammy surprise diagnosis today. I went to mychart and checked on my chemo info. It says my chemo treatment is for infiltrating ductal carcinoma. once again, thanks doc. For NOT telling me this other diagnosis. LOL. Wow.
I am definitely seeking 2nd opinion. I will see if city of hope is accepting my insurance although I doubt it. But not going to hurt to try.
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pneuma,
What do you mean by other diagnosis? You knew your stage/grade after your biopsy. I believe you said stage II, grade2 but you were not told what type of bc you had? I have never known anyone who was not told what type of bc they had. What does it say in my chart? The type of bc you have is often the first thing you’re told. You have IDC, which is the most common type of invasive bc. What type of cancer did you think you had? You know your grade, stage, hormonal profile, but not what type of bc? Highly unusual and I’m surprised you didn’t ask (You shouldn’t have to ask, but it’s a key piece of info which is why I’m surprised) .
pneuma, everyone has their own experiences through treatment. Once again, everything you described with respect to side effects is known and considered typical, yet you doubt your doctor and believe something awful and fatal, like bleeding out, is happening to you. Having this level of mistrust in your mo will not serve you well or allay your fears. Again, I’m no insurance expert and I don’t know what type of insurance you have but it’s not difficult. You just need to make a phone call or two. Perhaps a family member could help you but since you feel that your mo and staff are uncaring liars who are making light of your concerns, I think switching is almost essential. And again, please explore integrative medicine.1 -
exbrnxgrl My biopsy stated clear about the ER+/HER2+ cancer I have but it did mention - oh… my bad it did say - invasive carcinoma of breast in my biopsy. histologic type - with mixed ductal and lobular features.
but now actually I also checked my chemo round 1 and it did say I am being treated for :
infiltrating ductal carcinoma which is also called invasive. ER+/HER2+ Grade 2 Stage 2
So that's the OFFICIAL I believe what BC I have. It's just odd that both my onco and Breast surgeon was primarily concerned about the ER+/HER2+ status of my BC. Because that's what my onco mentioned and I actually asked my Breast surgeon what cancer I have she said - HER2+ .
I guess because they based the treatment protocol from that status?
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Ok so I had a nose bleed last night. It's just a line of blood. So Dr. google to the rescue. Nose bleed is actually a common side effect of chemo! Funny they don't mentioned that to me. So thanks DR. Google! Dr. Google also recommended a natural remedy for it:
It said use saline spray. For now I have saline gel so that's what I use when I go to bed at night. Then Dr. google said to also use petroleum jelly and that's what I use in the day. The key is to keep the inside of your nose not dry. So far so good. No nose bleed today.
I am still eating good. Appetite still not affected. I did have a loose bowel movement today. Not diarrhea quite yet, I think.
So that's all my side effects for now…. with NO prilosec. Actually I have the generic one - omeprazole delayed release capsule. My goodness there is an attached info and it is LOOOOOONG and the text is so small it's insane I am not reading ALL that!
It's a good thing I didn't pay for it because I hope to really NOT use this! Just because you are prescribed a medicine does not mean you HAVE to take it. Imodium made me NOT take this generic prilosec because the side effect and potentially another cancer it can give me is SCARY. I told my husband that and he still insist on buying it! ya he can buy it but I ain't taking it. Watev, it's my life at stake here!
And yes I don't trust big pharma. That's why I prefer natural medicines. It's how I will handle my cancer. My cancer, my decision.
End of.
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You were not deceived nor was information withheld. There was no other diagnosis. Infiltrating ductal carcinoma and invasive carcinoma are the same thing ( you do have mixed ductal and lobular features). Once that’s established your hormonal profile is a major factor in developing a treatment plan so that is why those things are important. HER2, is not the type of bc you have. It is just part of your hormonal profile, so perhaps there was a miscommunication.
All medications, prescription or OTC, come with long lists of warning about side effects as is required by law. Many of those things are very, very low incident and unlikely to happen. We all know that no one is compelling anyone to take prescribed medications and as a patient, all medical decisions are up to you! I would suggest that you take a bit more time to educate yourself about bc, chemo, side effects, etc., as you have some unfounded assumptions about these things. Please also look at your specific type of bc and understand your individual risks. HER2+ is nothing to fool around with and Herceptin has been a game changer. Look at both science based research and anecdotal evidence that most natural treatments provide and maybe set your emotions aside to see which treatments give you the best chance of nipping this beast at an early stage. I doubt there is a single person here who would not want a “natural” treatment that does no harm while simultaneously killing bc cells. The problem? Despite anecdotes, no evidence exists of such a treatment. You are an adult and the choice is up to you. I am not trying to convince you to go one way or the other but I feel as if you don’t have a complete understanding of bc and your bc in particular but you do have a lot of feelings about your treatment. So please educate yourself on science based information and then look at anecdote driven information and try to make decisions based on fact , not unsupported suppositions . You are free to stop chemo, free to switch doctors, free to not take prescribed meds as are all of us . No one is forcing you or any adult patient to do anything.
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I believe the reason why I don't have the side effect that I was told it's the pain in extremities like the fingers and toes. or swelling is because I never take OTC meds. I never use tylenol for pain or fever. I use the almighty vick's for EVERYTHING. I don't use vick's for my cancer though. LOL. I give science a chance on my cancer. And I am telling you now this is the first and LAST I will do chemo. I gave it a chance. Will it take out my cancer? I HOPE so!
I will deal with my cancer how I want. This is the ONE time I will give science a chance to treat my cancer then I will do the natural way - change of diet and exercise I already have 2 cancer diet cook books.
I only did this chemo for my husband. I NEVER wanted to do chemo. I do this for him but I ain't taking big pharma meds that will potentially kill me.
End of.
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Not all known side effects are experienced by everyone and there is no known connection between OTC meds and neuropathy, which is what you’re referencing. It is doubtful that not taking Tylenol or other OTC meds prevented you from experiencing neuropathy. Again, it is well known that not every side effect is experienced by everyone taking the same treatment! Your assumption is not based on fact at all.
You don’t have to justify yourself to anyone! You have every right to decide your treatment and everything else associated with bc. I think everyone here supports whatever choices you make and the only caveat is to make those choices based on facts. Deciding to change your diet and lifestyle can be good for your health as well as making you feel as if you are being proactive in keeping cancer at bay but like everything in life, comes with no guarantees. Take care1 -
So far so good. No nose bleed. Now trying to decide what nausea med to take. Hopefully I don't have to. I added green tea in my drink list. I usually drink sweet tea and ice preferred. But for the first time I drank hot unsweet green tea. Supposedly good for BC. And we all know sugar fuels cancer. It also doesn't help my glucose is high again on my last blood test.
I actually am surprised that I like the unsweet tea. I think I am having a brain fog. I forgot what else I was going to say. LOL.
Oh well.
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- pneuma,
- So happy to hear that your day is starting off well. The sugar feeds cancer theory was debunked a while ago. This is a great article without a lot of scientific/medical jargon so it’s easy for us civilians. Consuming a lot of sugar is bad for many reasons, but this isn’t one of them.
- I also want to wish you the best going forward and hope you find a way to make peace with your situation.
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Woke up in the middle of night. Full blown diarrhea. Super nauseous. Thankfully green tea settles my stomach. STILL no prescribed meds taken. Food tastes bitter. I had 2 red bumps on inner thighs. Applied benadryl cream. Now only that one bigger red bump is there. Put benadryl again.
I didn't like my infusion nurse on my round 2. She cut my infusion time almost in half! It's supposed to take 4 hrs and she made it for 2 and a half hours! I was knocked out almost the whole time and woke up with sound like running water!! No joke that's how FAST the drip she made on my infusion.
My husband even said - I think it's better if you just drink it. Gosh. Next time I will whine about that! I think it's the reason I feel this nauseous.
She said it's just flushing… like I don't know, it's insanely fast drip. My port got swollen! LOL. Is that even possible?
I liked my round 1 nurse better. Really not happy with my DON'T care team. I texted my niece. Looking for a new cancer doctor. Hopefully she recommends someone that will ACTUALLY care. Or someone I can trust. And I don't care if I have to drive farther just for my peace of mind. But the real question is - do they take my insurance? U.G.H. already!
Cancer is a big deal in itself to deal with.
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Welp. My husband made me do it! He sees me looking weak and was mad that I don't take my prescribed meds so he said - ok then why don't you take your natural meds and I said yeah the green tea settles my stomach.
And then he said no the medical cannabis! LOL. I forgot about that. I bought that when I had the burning sensation PAIN after my PET scan.
And it worked. I am no longer nauseous. He was like no it won't be THAT fast. Well, it is, to me, SO.
Yes, I prefer taking the cannabis than the big pharma meds.
And I never ever taken recreational drugs in my life. Or even smoked weed. or smoke in general.
I bought the pill form medical cannabis.
Other than that, my elbow feels dry. So I put lotion on it.
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This is the worst I feel so far. The nausea and headache is constant. At least diarrhea is only 1 to 2 x a day. Food tastes weird. I ALMOST took zofran today but change my mind and took the cannabis pill instead.
I also feel like I am floating/out of body but it's probably the weed effect. LOL. Wow. Just in general shitty, shitty feeling. Hopefully green tea settles my stomach
Round 2 is definitely not starting as good as round 1. But if by the end of this, I NEVER bled, then I guess I am right NOT to take OTC meds.
Imodium is the one I think that made me got my 'period'/bleeding and nosebleed on my round 1.
So I will see. I also really believe it's the round 2 infusion nurse cutting my infusion time in half from 4 hours to 2 and a half is the reason I feel THIS bad.
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Sorry you are not feeling well Pneuma. Hope this will pass soon.
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Thanks. I actually feel better now. I probably am dehydrated. I most likely would ask for hydration infusion like you recommended, I believe. And even my doc told me I can request for one anytime.
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Wow. I feel better now. This time I just drank half pedialyte, half water on ice. I probably am just dehydrated. I was too nauseous I hardly get up to drink or do anything. Hopefully me feeling better continues. Please, God.
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Thank you Lord. So far so good. Although I can feel nausea might come back, hopefully not. So it took 5 days for nausea to be under control. Hopefully, for good. I felt so sick the past few days that I contemplated taking my nausea meds. Thankfully cannabis pill to the rescue. I hope to not take any pill today. Or ever. LOL.
I also decided to stop using petroleum jelly inside my nose, while it did made my nose moist, I am afraid it might clog the pores on the inside and painful inside pimple on the nose is not fun.
Once my nasal saline gel is empty I most likely will buy a saline spray to keep my nose moist.
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What a day. Tornado hit our area last night - power went out, we can hear and see sparks from power lines outside the house. Trees down, branches fell in the powerlines… Insane. We can still hear zapping noises up to now, my husband had to buy a generator so the food in the fridge won't go to waste. Thanks to the generator, I can stay in the house. I think I will go crazy nursing myself through my chemo with no power and food in the fridge getting wasted.
Thank God, I didn't have to take ANY meds yesterday. Absolutely no appetite. Loose bowel movement. I think my privates are getting irritated. When toxic waste pass through it…. TMI but it is what it is.
So aside from a possible toxic waste 'burn' down there. I also feel my scalp starting to burn so ya I guess round 2 is the BURN phase. How fun. N.O.T.!!
Round 1 is BLEED phase.
Round 2 BURN phase.
Isn't chemo fun? Ya FCK you too cancer!
I can't wait for round 3…..
N
O
T
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!
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Hang in there Pneuma. Glad you got the generator so you have some power. I was very lucky last night. I was coming home via public transit when the tornado warnings rang. There was no place to shelter and I thought I had to wait 30 minutes for the next bus according to the tracker. Fortunately the bus came in 5 minutes and I got home just as the rain was started to pour. No damage near me I think. Sounds like your situation was very scary with the power lines zapping.
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It really was scary. I was not able to sleep worrying about my husband. I told him to call his work about the possible livewire outside our house but he still drove to work. Then he called me a little later and his work called him telling him not to go to work because they also don't have power there. I told him - I told you so!
Lucky you. I never experienced this hard affected by a tornado before. There's always a first. And like they said - when it rains it pours. UGH.
Stay safe.
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Power actually was back on around midnight. Welp. I guess the generator was worth it for my peace of mind and not totally going nuts.
I also want to let anyone who reads this if you can apply for unite for her! Thanks to this website. I heard about unite for her. A lady called me today so my $75 grocery gift card is on the way! I also received my first ready to eat meal yesterday! I had one today. Well I have no taste so i really don't know if it's good. I do taste spice I hope it won't give me more sores down there when it turn into toxic waste. UGH.
I also called the Komen foundation. They assigned a patient navigator for me. They said I should hear by the end of the week. Nothing yet.
Meanwhile I made an appointment with that radiation oncologist. I believe my niece works as her assistant. Now contemplating on cancelling my breast surgeon appointment. I think I will change breast surgeon too. If it works out with this Dr. I will be driving farther. Oh well.
I wonder if I mess my treatment plan with this. I don't care. I am not happy with my DON'T care team. Time to find a better one.
Reasons why I changed:
I had an MRI, never discussed with me. Never seen it. I asked, she said it all looks good.
I had a PET scan - never discussed with me. Never seen it. I asked, she said it all looks good.
Said I had GERD when I don't! never discussed it with me, either.
Round 2 infusion nurse was horrible cutting my infusion time in half! Set the the drip too fast that it LITERALLY sound like gushing running water!
I honestly am amazed I am still alive with all the bleeding and burn phase I experienced so far!
I have a social worker assigned. I called. Got a voicemail. Left a message - that was like 2 weeks ago. LOL. NOTHING. I told my nurse navigator about it. She said he's the ONLY social worker. LOL. Coz I asked if there's another I can call. So I said I guess I will wait for his call. ya watev.
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Not good. My index finger was hurting all night. When I woke up today I looked and it looks like there's a puncture hole on it, what the hell.
I just sent a picture on mychart. Asking what is this? Damn.
I am pretty sure I didn't cause that. I am legitimately scared.
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I don't understand. Why are you afraid of a small puncture hole on your finger? That sounds like something to put a bandaid on and wonder how you did it without noticing at the time.
This is not something to bother a very busy oncology team with. You don't seem to be aware that they have hundreds of patients they deal with, many of them with severe side effects, not bloody noses and mild nausea. Those are expected for pretty much ALL chemo patients. Nothing you've written about has even risen to the level of moderate side effects. I understand you're afraid of these mild symptoms, probably because you haven't educated yourself on what to expect with chemo.
Here's a suggestion. Rather than just posting every minor symptom you encounter, take the time to read other postings here. Start with threads about HER-2 positive cancer, then maybe check out threads that deal with chemo and it's side effects. Use the wisdom of the thousands of women (and men) who have traveled this road before you. Hopefully it will reassure you that what you are experiencing is nothing to panic over. And it will help prepare you for what's to come. Chemo is cumulative. Your side effects will most likely get worse with each successive infusion. You can do this. You just need to know what's to come, and work with your team to minimize their effect on your daily life.
Good luck! Trish
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pneuma,
I haven’t commented in a while as I don’t want to sound as if I’m invalidating your feelings.
I agree completely with trishyla. Please remember that even when going through chemo, your body still experiences normal everyday things that are not side effects of chemo. Cuts, bumps, bruises, rashes, toothaches… any of these can happen but not because of chemo. I hope that a nurse navigator, social worker, or someone can help you gain a more realistic perspective on your situation because you have created an intensely anxiety provoking situation when there doesn’t need to be.
Your feelings are valid but they shouldn’t override facts (finger punctures are not an se of chemo, people do not bleed out for a week, not taking OTC drugs is not a preventative for neuropathy) because your feelings are leading you down dark paths to false assumptions that there’s no need to travel and you’re associating things that have no relationship.
I wish I had better words to help you. Take care1 -
Since you are interested in cannabis , here is a link to a thread about its use. It’s not a very active thread but contains a lot of good info and personal experiences with cannabis use and treating bc side effects. I don’t know why the link takes you to p.5, but you can scroll back to p.1
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You sound exactly like my don't care team. And I am just over it. I NEVER had major sickness or surgery. So I think - no - am ALLOWED to worry.
And this is me journaling what I am experiencing as they are happening. If you think it's not a big deal well it is to ME!
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I really try not to take any pills. And I was feeling really weak and shitty again. then my husband reminded me again to take the cannabis so I did. It did help me feel better and most importantly gave me some appetite.
My appetite is non existent. So is my taste so it helps me.
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I scheduled a hydration infusion today and they scheduled a micro culture test in the lab for me too. I think I am infected. The nurse navigator when she called me yesterday said that I am probably having a UTI.
great….
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So I just got a pee test. And I don't know how when I have it, I can't pee! Like… So I have to ask for bottled water and cranberry juice just to make myself pee after my infusion was done. They're both small sizes so I have to wait for a few til I get the urge.
And whoa my pee is almost orange. How? I was supposed to be hydrated by then? And I hope I peed enough.
The patient navigator from Komen foundation reached out to me. She actually reached out way earlier through email but I don't check my email regularly so what did she do? She TEXTED me the very same thing she sent on email.
That's the level of commitment and care I wanted and honestly that should be a MUST for all cancer patients. Unfortunately that is not the case.
It's all about money money money. Like my Doctor is asking for $100 a pop whenever I see her. Only to be in a hurry to leave the room. LOL.
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