Changes all the time
I feel like I can't trust my body. The side effects change daily it seems. I've gone from the horrendous screaming BM's of last week to BM's that just decide to occur with no warning, no pain and no real feeling at all. 10+ times per day. Back to wearing pads 24/7. I'm SO gassy too. No appetite still, but not really nausea either.
For the past several days I've been feeling much more fatigue and short of breath and heart palpatations just crossing a room. When I got up yesterday, I could barely make it down the stairs, I was so weak. My husband pushed a Boost into my hand and said, Drink it, because since you aren't eating, your body is eating itself. Down to 83 lbs.
I drank the Boost, and took my meds with OJ, which I promptly vomited up. My husband was being short tempered with me and I don't blame him a bit. Eating is just so difficult. I'm too tired to chew. Nothing tastes good. He made me some toast and I tried to eat it and vomited that up too.
I had appointment with rad onc at 8:30 for check up. When I got there, I needed my husband to hold me up to walk into the place. O2 was 96, BP 100/56, Pulse 128. Dizzy. Dehydrated.
Dr. said he didn't want to put me in the hospital for the weekend, so sent me over to infusion to get fluids IV. and a CBC. Critically low RBC's, WBC's and platelets were down to 28. Thank you Mitomycin C. I was happy to not be hospitalized. I slept the entire 5 hours I was there. Left with my pulse at 85 but strict instructions to go to Emergency if I noticed any bleeding from anywhere even my gums when I brush my teeth, any more increase in weakness and return of rapid pulse and SOB, and to stay away from anyone who may be ill.
I need to drink and eat more. It's on me to do to do this, but it's just so, so hard. Doc said I should have called sooner, but I don't know what's normal side effects and what's over the top side effects.
I remember some of you said you had to be hospitalized after your treatment ended, but I don't remember why. Is there anything else I should be looking out for?
Comments
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Wisteria
So sorry you are really struggling through this. Like you, I just could not force myself to eat sometimes. People who haven't experienced that really do not understand that you cannot make yourself take in any food if your body is in rejection mode. I hope you can gut your way through this, as it is important to get some nutrients and fluids in your body. Please know that I am thinking of you and I send positive wishes!
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Wisteria
Thinking of you, too. I have to ask - have you tried Medical Marijuana? I KNOW that it really helps many people with this particular symptom of not being able to EAT and also not being able to keep it down. Is it legal in your state? I will definitely be getting a little before I start treatment. I used to use it back in the 70's but don't really always like the high, so I stopped decades ago. But for the nausea and appetite I will do it. In any case, I am thinking of you, too, and hoping for a resolution of this difficult time.
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Wisteria
im glad you got some fluids and I hope they helped you to feel a little better. Before my treatment was over I got a urinary tract infection, took oral antibiotics for it, and it continued to progress until I was septic. All my blood counts were really low and I was right at the borderline of where they give you platelets. So watch out for infection if your counts are that low. If nothing sounds good try stuff that at least doesn't sound bad, if you know what I mean. If you can't keep anything down make sure and let your doctor know- do you have any nausea meds you can take? My oncologist had me fill some of them just to have on hand if I needed them. Thinking about you and wishing you well.
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Fruit saladmp327 said:Wisteria
So sorry you are really struggling through this. Like you, I just could not force myself to eat sometimes. People who haven't experienced that really do not understand that you cannot make yourself take in any food if your body is in rejection mode. I hope you can gut your way through this, as it is important to get some nutrients and fluids in your body. Please know that I am thinking of you and I send positive wishes!
My husband made me fresh fruit salad yesterday, and so far, that's the perfect food. Maybe not enough calories, but plenty of fluids, and with a bit of fresh whipped cream, it was easy for me to eat, although I filled up really quickly.
I would prefer anything cold over anything hot. My husband loves to cook, and he's doing his best to make appetizing meals, but I just can't stomach them.
I wish I had a dollar for every turkey sandwich I've had...even though I onlly can eat half at a time.
He learned his lesson about trying to force me to eat after all the vomiting on Friday. I learned too that I can't let him guilt me into something that I absolutely know will not turn out well. I was trying to not hurt his feelings, and I know I need to try harder to get food into me, so today is the day I'll be experimenting with the hand blender to make some smoothies and to mix Boost with ice cream. I'll try anything at this point. Thank you for being so understanding. You are so right. People who haven't experienced this feeling have no idea what it's like.
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MedsMollymaude said:Wisteria
im glad you got some fluids and I hope they helped you to feel a little better. Before my treatment was over I got a urinary tract infection, took oral antibiotics for it, and it continued to progress until I was septic. All my blood counts were really low and I was right at the borderline of where they give you platelets. So watch out for infection if your counts are that low. If nothing sounds good try stuff that at least doesn't sound bad, if you know what I mean. If you can't keep anything down make sure and let your doctor know- do you have any nausea meds you can take? My oncologist had me fill some of them just to have on hand if I needed them. Thinking about you and wishing you well.
Mollymaude, I have three different meds for nausea that I alternate around the clock. I don't understand why they aren't working well.
I think I'm at the nadir of this last chemo treatment, so I'm really hoping things start turning around soon. The side effects are still changing...some stay the same, some get worse, some get better and some just start out of the blue. The latest is the last three days, when I get the heart palps I also get a wicked headache on the back left side of my head. It goes away when my heart rate returns to normal. I don't know if this is something to call about or if it's a "normal" side effect. Also, it's during this time of rapid heart rate that I have the worst of bladder incontinence. I literally could just be pulling up my pants after peeing and I immediately start going again even though I could have sworn my bladder was empty. I also get a prickley, burning hot feeling in my torso...both front and back while this is happening. ALMOST like a hot flash, but not a hot flash. Again, this goes away when my heart rate and SOB stops.
I just got a phone call from my med onc. She just got the report from my visit to rad onc on Friday and doesn't want to wait two weeks to see me and has instead told me to come in today at 12:30 for blood and possibly more fluids. So I'll tell her all my symptoms and we'll see what happens now. Will keep y'all posted on progress.
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Wisteria83Wisteria83 said:Meds
Mollymaude, I have three different meds for nausea that I alternate around the clock. I don't understand why they aren't working well.
I think I'm at the nadir of this last chemo treatment, so I'm really hoping things start turning around soon. The side effects are still changing...some stay the same, some get worse, some get better and some just start out of the blue. The latest is the last three days, when I get the heart palps I also get a wicked headache on the back left side of my head. It goes away when my heart rate returns to normal. I don't know if this is something to call about or if it's a "normal" side effect. Also, it's during this time of rapid heart rate that I have the worst of bladder incontinence. I literally could just be pulling up my pants after peeing and I immediately start going again even though I could have sworn my bladder was empty. I also get a prickley, burning hot feeling in my torso...both front and back while this is happening. ALMOST like a hot flash, but not a hot flash. Again, this goes away when my heart rate and SOB stops.
I just got a phone call from my med onc. She just got the report from my visit to rad onc on Friday and doesn't want to wait two weeks to see me and has instead told me to come in today at 12:30 for blood and possibly more fluids. So I'll tell her all my symptoms and we'll see what happens now. Will keep y'all posted on progress.
Hi, I am so sorry you are having these challenges with recovery. My feeling on whether these are normal side effects is that they are normal in regards to you being dehydrated and having a low red blood count. I am happy to hear you are going in today for blood / fluids. The heart palpitations, headache, dizziness, and fatigue are all symptoms and will hopefully be at least somewhat better after today. I was in this spot a little over 6 years ago and always felt much better after receiving blood (like an instant boost). For the record, I did need this a few times until able to really start eating better. Once I was eating it was suggested I take ferrous sulfate (iron) daily, which I still do today and have maintained a healthy blood level since. The bladder urgency is likely related to radiation and may require some pelvic exercises to regain better control over time. Please keep us posted as to how you are doing, and know you will be in my thoughts for better days ahead.
katheryn
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Wisteria
Im glad you got checked out today and hope you got some fluids to help you feel better. And I hope that your appetite gets better. Keep us updated if you can.
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Wisteria
I am sorry you're going down such a bumpy road right now. It's good that you have alerted your doctors to everything that's going on so that they can monitor you closely. While I never lost control of my bladder, I did have extreme urgency, and for a time, never let myself get more than a few steps away from a bathroom. Fortunately, it passed as time went on, which I'm sure will be your experience too. Please let us know what you find out after your next appointment. I am sending all good thoughts your way!
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Update
Thanks to you all for your concern. I got fluids, a chest CT and head CT and an EKG and bloodwork. My doc is being very thorough.
All tests were good! Platelets went down to 21k, and Wed. if they don't start going back up she'll transfuse me. Today I picked up an Event Monitor to check on the heart palps. She said maybe it's not anxiety like everyone has thought so far. It's small, only three leads, and like wearing a pendant. It has a wireless transmitter that I just need to have with me in the house or thrown into my purse if I leave the house and I'll wear it all the time except when bathing for 30 days.
The only thing she wants me to do is eat and drink and try to walk more. Even just to get the mail. I have to keep a food diary. Everything I eat and drink all day long. She does think that depression is playing a big part of my lack of appetite. She asked me if I have a body image problem. I do NOW. Never did before. I look like a concentration camp survivor and I don't say that in jest. I'm skin and bones and my muscles are gone. I've been underweight for years but never like this. Even when I had a good appetite and ate icecream every single day I never broke 100 lbs. 83 lbs. is extremely unhealthy for me.
So, that's that. On one hand, I'm glad to know that the chemo didn't wreck my lungs, but on the other hand, I wish I could just banish depression and eat like a normal person. OH...I'm also on Citalopram now for depression. Here's to hoping that everything starts to fall into place.
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Wis
Good to hear the update. And glad she started an antidepressant for you. I take citalopram myself and find it helps a lot. If your platelets are that low I would guess you're very anemic too and have every reason to still feel rotten. I hope that in the coming days your blood counts improve and you begin to feel better.
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Wisteria
So glad all of your testing came back okay. As for the blood counts, I hope they will go back up. My counts were quite low during treatment too. There were some days when I had the energy of a snail. Weight of 83 pounds is concerning. My weight at diagnosis was around 100 pounds. The lowest I got during treatment was 92 pounds, at which time my doctor threatened to hospitalize me for nutrition if I lost any more weight. Somehow, I managed not to drop anymore weight, but really had to force myself to eat. I wish I had some good advice for you on how to get a little appetite, but my experience was just like yours. Perhaps the anti-depressant will help, I hope so. Take care, there is light at the end of the tunnel! Hugs!
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Wisteria
i think it is very mean how the side effects keep changing. I just start dealing with one and it changes. it is good how your doctors are working together and keeping on top of things for you.
I was on citalopram before I started treatment and it really help keep my anxiety at bay. I don't think I could have gotten through the treatment without it.
i know what you mean about eating. I never actually want anything but will eat somethings when they are put in front of me. Melons we're my go to. Right now I am in a dill pickle phase. Have no idea why. Looking forward to a new phase That is a little less vinegary.
Stay strong and just take on day at a time.
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What's happening now?Tushygirl said:Wisteria
i think it is very mean how the side effects keep changing. I just start dealing with one and it changes. it is good how your doctors are working together and keeping on top of things for you.
I was on citalopram before I started treatment and it really help keep my anxiety at bay. I don't think I could have gotten through the treatment without it.
i know what you mean about eating. I never actually want anything but will eat somethings when they are put in front of me. Melons we're my go to. Right now I am in a dill pickle phase. Have no idea why. Looking forward to a new phase That is a little less vinegary.
Stay strong and just take on day at a time.
Hi Tushygirl, I'm just 11 days past the first chemo round, and eating is a huge issue. Everything hurts my mouth, and diarrhea is so bad that I'm just eating bread at this point. White bread that I haven't had in decades! But I just read your post and hoping you are doing better. And thanks for the anxiety advice - I need to break out my xanax more often I think. Just the thought of it helps a little!
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Wisteria
im 3weeks from last surgery hopefully and then tests PET, CT etc to hopefully say a end to all the treatments. I have diarrhea I've lost so much weight it's past not funny. I too have no appetite and my mouth I have thrush that I can't get rid if C-diff that I can't get rid of. If the C-Diff isn't resolved after this round of vancomycin I have to have a poop transplant my gastroenterologust told me this I busted out laughing and ended up crying because it will mean having to have the 3rd colonoscopy since December he will have me do the prep go get rid of my sick poop then put donor poop in my transverse colon. I only eat bananas, white bread toast and sometimes peanut butter when I can force myself to eat. I have to have fluids, transfusions, and platelets all the time because my blood counts are so bad. I'm so weak, fatigued I can't remember a day that I've not been severely nauseated and having diarrhea at the same time. I was sent to a endocrinologist last week because my cortisol level was very low so my nain onc was concerned about my adrenal glands and the endo checked my thyroid being thorough he said my thyroid was bumpy so I had a thyroid ultrasound that showed a nodule pretty big one on the left in my thyroid so he did s needle biopsy right there in his office. I'll get the results Monday. I told my story well at least part of it because I want you to know I think your a wonderful strong woman and while I'm not where your at I hear your pain and understand a little of what your going through. I wanted to tell you how sorry I am at what your going through and my prayers are with you and everyone one on the boards . I hope and pray you get to doing better.
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Wisteria
im 3weeks from last surgery hopefully and then tests PET, CT etc to hopefully say a end to all the treatments. I have diarrhea I've lost so much weight it's past not funny. I too have no appetite and my mouth I have thrush that I can't get rid if C-diff that I can't get rid of. If the C-Diff isn't resolved after this round of vancomycin I have to have a poop transplant my gastroenterologust told me this I busted out laughing and ended up crying because it will mean having to have the 3rd colonoscopy since December he will have me do the prep go get rid of my sick poop then put donor poop in my transverse colon. I only eat bananas, white bread toast and sometimes peanut butter when I can force myself to eat. I have to have fluids, transfusions, and platelets all the time because my blood counts are so bad. I'm so weak, fatigued I can't remember a day that I've not been severely nauseated and having diarrhea at the same time. I was sent to a endocrinologist last week because my cortisol level was very low so my nain onc was concerned about my adrenal glands and the endo checked my thyroid being thorough he said my thyroid was bumpy so I had a thyroid ultrasound that showed a nodule pretty big one on the left in my thyroid so he did s needle biopsy right there in his office. I'll get the results Monday. I told my story well at least part of it because I want you to know I think your a wonderful strong woman and while I'm not where your at I hear your pain and understand a little of what your going through. I wanted to tell you how sorry I am at what your going through and my prayers are with you and everyone one on the boards . I hope and pray you get to doing better.
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Poop transplantKmessier said:Wisteria
im 3weeks from last surgery hopefully and then tests PET, CT etc to hopefully say a end to all the treatments. I have diarrhea I've lost so much weight it's past not funny. I too have no appetite and my mouth I have thrush that I can't get rid if C-diff that I can't get rid of. If the C-Diff isn't resolved after this round of vancomycin I have to have a poop transplant my gastroenterologust told me this I busted out laughing and ended up crying because it will mean having to have the 3rd colonoscopy since December he will have me do the prep go get rid of my sick poop then put donor poop in my transverse colon. I only eat bananas, white bread toast and sometimes peanut butter when I can force myself to eat. I have to have fluids, transfusions, and platelets all the time because my blood counts are so bad. I'm so weak, fatigued I can't remember a day that I've not been severely nauseated and having diarrhea at the same time. I was sent to a endocrinologist last week because my cortisol level was very low so my nain onc was concerned about my adrenal glands and the endo checked my thyroid being thorough he said my thyroid was bumpy so I had a thyroid ultrasound that showed a nodule pretty big one on the left in my thyroid so he did s needle biopsy right there in his office. I'll get the results Monday. I told my story well at least part of it because I want you to know I think your a wonderful strong woman and while I'm not where your at I hear your pain and understand a little of what your going through. I wanted to tell you how sorry I am at what your going through and my prayers are with you and everyone one on the boards . I hope and pray you get to doing better.
K,
My doc also mentioned the poop transplant and I had the same reaction that you did. Who on earth thought that one up? My C-diff wias neg. and since transfusions, fluids and Neupogen shots, things are turning around slowly but surely. Still not hungry, but trying to eat.
Scary about your thyroid. Hoping the results are benign. Please keep us posted.
I'm probably the exception to the rule, but my counts really plummetted a few weeks after treatment ended. Getting them back up has been a challenge. I know docs were concerned because I wasn't in great health before treatment, and treatment was rough on me, I just don't think they anticipated that things would get as bad as they did. I'm making high protein/high calorie smoothies now and maybe that's helping. They are easy to make and drink. I do better with a smoothie that a regular meal...much to my husbands dismay, since he loves to cook and has been trying his best to make appetizing meals for me for months.
Fatigue and weakness is constantly with me. I'm supposed to try to walk and get more excercise but the best I can manage at this point is the trip to the mailbox that I need to psych myself up for. I appreciate your compliment, but I feel far from a being a strong woman. Having this board and the wonderful people here has been a sanity saver for me.
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Wis and Kmessier
Wis, I'm glad to hear you are doing a little better. It's encouraging that you can drink your high calorie high protein smoothies. And Kmessier, so sorry to hear about your struggles. It sounds absolutely miserable. Please update us as you can about the thyroid biopsy. Sending positive thoughts to all the members struggling right now.
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