My Chemotherapy Journey
Comments
-
Your nurse navigator is correct! Google is a terrible diagnostician. It’s useful for very general information but says nothing about your individual health and wellness.
0 -
@pneuma I'm following along, I just started my chemo on Wednesday. Headaches have been my main complaint as well and I never get them either. I was reading about what not to eat, saw that blue cheese was on there. I usually use raw honey in my smoothies and have been using without thinking about that one, so quitting it now. My taste buds are off as well, just not sure what I feel like eating. I just got my port today, had my first chemo without it….the port without being knocked out wasn't fun. Glad all seems normal, wishing you a better day.
0 -
Agree on your last statement. Actually I feared I had developed diabetes because unquenched thirst is also its symptom especially when my appetite came back. My glucose was also high on my last blood test.
0 -
Thanks. It seems your cancer came back then. It was still a good run with just lumpectomy and radiation the first time! So you are kind of a veteran. WE CAN DO IT! I hope you get through with yours as good as your first time.
Yes, being conscious in port placement is scary but they said it's better that way. Especially the surgeon actually made me hold my breath during the operation. I'm sure yours did the same. Was yours as painless as mine. I got lucky. I hope my treatment has a long run like your first diagnosis.
Wishing you well.
1 -
Ok, my unquenched thirst came back yesterday. I got worried that I am developing diabetes. So I just followed the nurse navigator to just hydrate.
My period is heavy flow, when I woke up this morning, I thought I have to wash my bed sheets which I literally just washed, day before. Fortunately I didn't have to.
So far as I am writing this, unquenched thirst didn't come back. Apart from heavy flow period, so far so good. No head aches, no pain, no diarrhea. no BM as of today.
0 -
@pneuma Yes I was so blessed to have so many years cancer free. I was so young the first time with 3 young kids. This time was another shock, I have 3 young grandkids that I don't wanna miss out on, so doing what's recommended. I don't feel like a veteran because I had lumpectomy/radiation in 1998 no meds. This time mastectomy and chemo so far and its all new to me. I didn't realize you can only have radiation once. Not for recurring cancer. I'm thinking of adding some hydration days to help with everything, maybe that would be an option for you. All the best to you.
0 -
When you said hydration days - do you mean like going to infusion for it? For now hydrating with plain water as much as I can works. So until it doesn't, then I'll see about other options. IMO - hydration is the most important antidote for chemo.
Hope you have happy 4th with your kinds and grand kids!
1 -
Well, it FINALLY happened! Last night when I was showering, and I reached for the shampoo - what did I see in my hands - clumps of hair. Yap. And all the time I was showering hair, hair and MORE hair everywhere! Falling like the leaves in autumn.
So I told my husband on the 4th - I will finally have the FORCED independence from my hair. He will give me a buzz cut.
I am both scared and excited - I actually asked my husband once to give me a buzz cut long before my diagnosis just coz…. Well, I guess this time he has no choice but to really do it.
Yesterday, I had no BM at all. Today, I had a normal BM. My period is waning. That really bamboozled me. I didn't like it. Like I said I think that's not good in my case. But who knows. Only time will tell if my (SURPRISE!!) period will affect my survival or not. I mean in like prolonging or shortening it.
Other than my hair, I am eating good. Appetite is back, taste is somewhat back. Oh another new one. I have a runny nose and there is some blood when I wipe it. So yeah. What does it mean? Who knows?
As of today. I STILL have not taken any of the pain/nausea meds.
0 -
hi pneuma,
Sounds like you’re following a typical path for a chemo patient from what I understand. May I ask why you think that a short period means that something is not good? What’s the medical reason for your thinking and did your mo or nurse address this?
It’s great that you haven’t had to take any of the prescription meds and it sounds as if you are coping well. Take care0 -
My last period was LAST year. November/December. So how curious that my period decided to appear after my chemo. But my sister gave me this idea that it might not be a menstruation but I don't know… I might have been bleeding internally? Come to think of it when I pee it's blood red. I never had blood red pee all those years I have my period. Then my nose bleeding and some blood on my spit too.
Sorry too graphic but that's what I experienced It's also during that time that I had that unquenchable thirst. So I don't know you would think the nurse will tell me to go to the hospital but no she said it is 'normal'. LOL. K.
I'm still alive- for now. But I will definitely mention that to my doctor. And no she NEVER calls me or replies to me even though I have been sending these side effects. UGH.
0 -
My 'period' ended. But now I am doubting it's a menstruation. I probably have some internal bleeding. I am not bleeding anymore. But wow. You would think the nurse or my doctor would be alarmed but nope.
Now that I am no longer bleeding, I honestly probably would have fainted if I didn't assume I was having my period. My sister is probably right. Internal bleeding? I am still alive though so damn that's scary. That I ACTUALLY bled for couple of days. And live to tell about it like a champ.
And I thought I was having it easy. I definitely will mention this. But I won't be surprised if the nurse will reply with:
that's normal.
WOW.
To recap this is my LITERALLY bloody experience for couple of days:
I peed there was 2 blood clots in the toilet bowl. For the next couple days when I pee it is BLOOD red. My nose is runny and when I wipe it there's some blood. When I spit there is some blood. My stomach is SUPER bloated. My tumor breast is swelling. I have unquenched thirst. Even though I just drank water and my mouth is not dry. I have 130/89 BP which was supposedly high. My temp was 96.7
And yes I live to tell about it - for now.
1 -
I called my doctor's office. They're still close apparently. So I just vented on mychart. The last reply of the nurse was about my nose bleed. She said if I was not able to stop it and I was bleeding continuously for 5 minutes to let them know. Fortunately, the nose bleed stop right away. It seems I tend to have a nose bleed in the morning. Also fortunately my spit has no blood today.
I am leaning that I had internal bleeding. I told the nurse I hope the chemo did not damage my internals that I am bleeding out. And that the nose bleed is nothing compared to me peeing literal blood for couple days which I thought was menstruation but now I am doubting if it really was. I also said so I I guess I am fine coz I am still alive.
I was being VERY sarcastic and I doubt she cares. That's my DONT care team. I highly recommend them if you have cancer… UGH.
Aside from bleeding nose. I feel fine. I am annoyed right now. So.
0 -
pneuma,
Your frustration is clear. I will be completely honest , remember I have not done chemo, but everything you’ve described sounds pretty much par for the course and internal bleeding is generally not something that can be self diagnosed. That being said, it sounds as if you are not happy with the level of support/care you’ve gotten, especially with respect to your concerns on side effects. This may sound a bit crazy but since your relationship with your medical team will be long term, have you considered switching care providers? Feeling completely comfortable with your team and the level of support they provide can make this whole experience much easier. After my initial dx, I switched MO’s. I had complete confidence in my MO’s medical expertise but I felt he was a bit too clinical, not warm or friendly and I knew that he wasn’t a good fit for me. That might be something to consider. Take care
0 -
I hate to say this, bit you seem to be overreacting to normal, run of the mill, fairly mild chemo side effects. I did almost a year of chemotherapy so I know how scary it can be. The day after my first infusion, I called my Oncology nurse to tell her I felt really strange. She said "Of course you do, dear. It's because we've just poisoned you". Chemo is STRONG medicine. It has side effects. Your team should have educated you on what to expect.
Nosebleeds? Extremely common, and to be expected. Not internal bleeding. Extreme thirst? Very common side effect of the steriods you normally receive to help you better tolerate chemo. Not likely to be diabetes. Having an unexpected period? Not unusual in peri menopause, and during chemo. Also, not likely to be internal bleeding. Extreme fatigue and nausea are also very common.
You seem to be very anxious over the expected side effects of the strong meds you are being given to hopefully kill those cancer cells. You may want to contact your medical team to see if anti anxiety medication might help. Chemo is scary. But necessary. I hate to see you suffer more than you have to.
I hope that chemo is killing all those nasty cancer cells. Good luck.
Trish
2 -
pneuma,
trishyla brings up a good point. Were you given materials or information about what to expect during chemo? If so, perhaps reading those again will reassure you that what you have experienced seems to be completely in the range of expected side effects and then you won’t worry and jump to unlikely conclusions.
I know that you really struggled with the decision to do chemo but take some comfort in the fact that you are not experiencing anything outside of what is known about chemo side effects. And anti-anxiety meds? They can be useful as needed and don’t need to be used long term*. Take care*Disclaimer: Anti anxiety meds are commonly prescribed for a multitude of reasons. My comment is not intended to shame anyone or diagnose any medical condition.
1 -
My insurance is also a pain to deal with, if only I can switch to any doctor I want that's health insurance for you. So as much as I want to switch, my hands are tied. I am just hoping this chemo works. It seems my tumor is getting smaller so that's a good sign, I guess.
0 -
Well, nosebleeds is definitely not mentioned as a side effect. I really hope it's just me having my period and not something serious. It's just a scary coincidence that the nosebleed and bloody spit and unquenched thirst all coincide with my period. So you really would think I am bleeding out that week.
So far that was the most serious side effect I experience. I literally had a bloody week. Thank God, no nosebleeds today. My appetite is definitely back and most of my taste.
But good to know nosebleed is a side effect. They should add that as side effect along with the 'common' ones like nausea, diarrhea, hair loss, etc.
I don't think I need anti anxiety meds though. I actually, fortunately had not taken any pain/nausea meds I was prescribed.
I do tend to overthink/over analyze and it didn't help that my sister was actually the one who have the idea that it's probably not me having a period.
Thanks, ya I really hope all this nasty side effects are worth it. Damn cancer REALLY sucks. My tumor does look like it's getting smaller.
1 -
The nose bleed is gone as of today. Tomorrow? who knows? My appetite is back, my taste is mostly back. My most serious side effect was the bloody week - my period - hopefully it really was, nosebleed, some blood when I spit. Unquenched thirst.
All of it gone as of today. As it should be because on 7/9 - I will have my blood work done. Then next day - chemo for the 2nd time. I definitely am not looking forward what side effects it will give me this time. UGH.
Oh I had my buzz cut and yes I am STILL shedding. It sucks coz I have to vacuum a LOT. Hair EVERYWHERE.
1 -
pneuma,
Bleeding out is an incredibly serious medical condition that one cannot casually diagnose at home and likely not diagnosable by your sister. Additionally, I have never heard of anyone bleeding out as a result of chemo. Please know that I’m not trying to invalidate your feelings but hoping that focusing on what is known and seems typical will ease some of your stress.
I do think that you are overthinking a lot of what you’re experiencing but nothing you described seems concerning or unexpected under the circumstances. Everything you’ve described fits well with expected side effects and your doctors are not concerned. I wish I had better words to help you truly understand and believe this.
What type of health insurance do you have that doesn’t allow you to switch providers?0 -
Diarrhea is back. Hair is not everywhere anymore because my hair is almost gone. OMG. Runny nose is back but no blood. Thank God.
Nothing remarkable happen today. Aside from my bloody week experience. Chemo 1 is shall I say… hell on earth.
Yap.
Welcome to my nightmare.
0 -
Pneuma,
Thanks for sharing your experiences through this journal. I appreciate your writing style. I am Stage 4 and haven't had chemo yet but probably will at some point. It's helpful to read about the processes and what you mentally go through. Hope that this painful process will result in you never having to deal with cancer again.
0 -
pneuma,
I am so sorry that your worst fears about chemo seem to be coming true. You pretty much felt that this would happen and sadly, it did. Please continue to work with your medical team for symptom relief. I know you feel that they haven’t been responsive but please be persistent. Chemo is no walk in the park and your side effects are typical but nightmare suggests that you’re struggling more than necessary. I don’t know where you’re located or what type of insurance you have but I would really work on switching doctors. When you’re in treatment, you should feel like your medical team is there for you. It really makes a world of difference. Take care
0 -
Your last sentence is what we all hope for. But we all just have to deal with whatever comes, I guess. Thanks, I do try to humor myself with this living nightmare I am going through.
We all hope for the best, always. Wishing you well.
0 -
What actually surprise me today was my Dr. ACTUALLY called me early in the morning. LOL. She said she is going to put me on antacid to protect my stomach lining. She also answered my question. So that kind of pacified me. She also said she agrees with what the nurse navigator was telling me in mychart.
So I guess they kind of care(?).
0 -
Well well, guess who called me today? I almost got a heart attack when my phone rang and she said she's my Dr. LOL. That kind of pacified me. At least she explains what I was going through. That she agrees with what the nurse navigator was replying to me on mychart.
So ladies, I guess it really is normal to bleed(?) LOL. She said she's going to put me in antacid to protect my stomach lining. She also answered my question that if I ever have a nosebleed by tomorrow morning since I tend to have nosebleed in the morning - I asked if it's OK to take the steroid. Because I am scheduled to take steroid by tomorrow to 'prep' me for my chemo. She said it is fine…. well OK then!
Fortunately my nosebleed has stopped. I just want to make sure it's OK to take steroids. And she says she will see me on 7/10 - my chemo day. She sees me before I do my chemo. I also am always scheduled for blood work day before my chemo - which is tomorrow.
She also asked if I feel fine. And I do fortunately.
My sister from AZ also stopped by my house today with my other sister. So ya. She gave me cancer 'goodies'. So thanks sis!! They also took me out for lunch. I had a nice day today.
Thank God.
1 -
Went for my blood work today. If my last blood work made me late for my Dr.'s appointment because they were so busy and the room was full when I came in, and I was the last person waiting… UGH.
This time it's a breeze! I was in and out. Then the lady taking my blood told me why - she said this morning was CRAZY busy. And oh I know… that was the very same scenario last time. and so she gave me a very good tip, make sure you have an afternoon schedule EVERYTIME. I guess she was annoyed at the schedulers. She told me - she told them - why do you schedule them ALL in the morning? LOL. She sounded frustrated.
So I said oh I didn't know I can ask them to change. She said you absolutely can. So I thank her for the tip.
I noticed also that everytime I eat now, my nose is runny. Well at least there's no blood this time. And my husband said it's probably coz your stomach lining is thinning…. NOOOOOOOOO!
Probably why my Dr. said she will put me in antacid. I googled what it does. I never had taken antacid before. So does imodium. And I actually told them I feel like imodium triggered my bloody week.
Anyway, nothing about antacid and stomach lining so watev.
So ya another genius idea from my DR. to give me an OTC medicine….. I swear if antacid give me hellish side effects… I most likely will drop her as my onco.
Also, I prefer natural medicine always. My doc also KNOWS that. And that's why I never took any antacid or imodium before….
Thanks Doc.
0 -
Practioners of conventional medicine , for the most part, do not prescribe or recommend “natural medicine “, as most are considered food supplements in the US. Additionally, there is limited research based evidence to support their efficacy. It’s simply not in their tool box. You might want to consider adding a specialist in integrative medicine to your team, in addition to your oncologist.
integrative medicine, An approach to medical care that recognizes the benefit of combining conventional (standard) therapies (such as drugs and surgery) with complementary therapies (such as acupuncture and yoga) that have been shown to be safe and effective. For example, acupuncture may be used with certain drugs to help lessen cancer pain or nausea and vomiting. Integrative medicine tries to address the physical, emotional, social, spiritual, and environmental factors that can affect a person’s health and well-being.0 -
Chemo day - round 2. Well I actually was very satisfied with talking to my onco. I basically asked what I asked in mychart. To my not utter surprise of course she said everything is normal and that Dr. google is scary info. LOL.
She said me having my period during chemo is normal. I said after 7 months of no menstruation? She said yes, OK doc. She also said I didn't have sepsis. LOL. That I kinda believe. And I asked what about me being excessively thirsty? Normal. OK then! Trust in science, right….
Until an abnormal and weird thing happened. I was already doing my chemo when my nurse navigator gave me a copy of my visit. They call it after visit - it's just a paper summarizing my visit for the day and my next scheduled appointment…
I was taken aback by what I read - it says - issue addressed today - GERD!
I was like HUH?!!! We NEVER discussed it!!! in fact, I was the one who reminded her about the antacid she told me she was going to put me on to wait for it…… PROTECT MY STOMACH LINING!
So uh…. how did I suddenly developed GERD!!! Ugh. I was so mad my sister who is a doctor - she has fallopian tube cancer. Actually texted me. She actually is having her chemo at the same time. She is from out of state.
I whined to her about this weird situation and I told her point blank I think she just put that I have GERD when I DEFINITELY don't have one!! just to cover her ass if I do develop those scary side effects I read online. YES! Dr. Google did it again!! LOL.
What is VERY scary are all those insane hellish side effects I read and prilosec actually had a lawsuit! Prilosec is a PPI and reading about it - Dr. Google scared me the 2nd time!!!
So I have decided NOT to take it. But only will take it if I really did develop heartburn! Even against my sister who told me she probably prescribed it for preventative tx….
watev. I am sticking with my gut this time. Even my husband was annoyed at me. LOL I just told him I will take it of course ONLY and only if I have a heartburn!
End of.
0 -
pneuma,
I must ask you once again, why haven’t you been able to switch oncologists? You seem to doubt the answers she has given you, as evidenced by your somewhat snide responses, and you are questioning her note about GERD, which is understandable as she should have mentioned that to you.
I belong to a self contained medical group (everything from doctors to hospitals, labs, pharmacies, etc) and I can only use doctors in their system but I can change doctors if I want. I don’t think I’ve ever heard of insurance that prevents you from switching doctors, but I’m not an insurance expert. The reason I keep bringing this up is that many of us find that when we are seeing an mo we have faith and confidence in, even a challenging medical situation is made that much easier. And again, see if an integrative medicine specialist is available as they may offer complementary treatment to ease side effects in a way you prefer.0 -
How do I change oncologists? Do I need to ask my PCP to change onco? She actually was the one who recommended this Dr. to me. But she did say I can choose whoever I want. I probably should ask my niece, she is a radiologist assistant and she works at the same building where my breast surgeon is.
My niece did recommend a radiologist onco for my radiation therapy if I need it. Ya I can ask her who is the medical onco that is good in that building. What sucks though is where she works is a drive farther.
Like you everyone I see including where my niece and surgeon work in self contained medical group. But their location is a farther drive from me. So I supposed I can change as long as it's the same medical group.
But then again my sister who is a doctor told me that GERD is the closest dx to use to justify the prescription. And she also told me to take the meds so if my dry cough gets better then the cough is from GERD.
I actually had a dry cough last night and had 2 dry cough while I was in chemo. My sister also said she was prescribed prilosec same 40 mg because she also had a dry cough.
She said it's probably me having a dry cough that made my onco prescribed prilosec. but I told her my Dr. is NEVER aware of the dry cough! LOL coz my dry cough only started last night and I failed to mention it to her.
I did mention that I tend to have runny nose when I eat now. UGH.
0
