Starting Chemo in November 2017
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Blair...I went through several days of not being able to eat. At the time, I had gotten a Zometa injection (to strengthen my bones). I was so sick...and you describe it perfectly. After numerous attempts to get to the bottom of things, it was found that my creatinine level sky-rocketed...had to see a nephrologist. I was severely dehydrated. I was at the oncology facility six days a week getting fluids. I'm not saying your creatinine level is the culprit, but it absolutely could be that you are dehydrated. Hoping you get some answers soon.
Hope.
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I think nausea is a broad term that encompasses more than the urge to throw up. I think nausea, dehydration and lack of appetite are closely linked. My first line of defense is always drinking a lot of water. The first few days after neulasta I feel bad. I'm 9 days out and feel well now. I hope everyone feels better soon.
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Blair - I had a body PET scan & bone density, and cardio test all prior to Chemo. I hope you find answers. I know your trying.
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Well I'm 11 days after 3rd treatment and still feel like crap.I finally got an answer, to my steroid question, but not my recurrence rate. My recurrence rate was18% without any chemo. With chemo it would bring that down to 10% with the 4 treatments. So I was thinking each treatment would average two percentages down so that with 3, it would be down to 12%. The answer was that my OM doesn't know. Isn't there any formula to why they think 4 treatments bring it down to 10%? Apparently not. There is a big lack of research - which is very scary to me. How do they come up with these recurrence formulas, and yet there are no adjustments figured out if a treatment is missed. She also doesn't recommend stretching out healing time, only if wbc's are low.
So all I found out was that I'll be given steroids with pills.
The nurse said that my treatment was a preventative treatment and not one that is trying to kill cancer cells in my body. What? I don't get this????? I thought I had cancer cells in my bloodstream. If chemo drugs are kept in your system forever - how can these accomplished treatments not be somewhat in my body? This is frustrating. Maybe it takes the full amount of poison to be strong enough to fight future cancer cells. (?)
So, her last remark was to talk to my Dr. on my day of treatment to make up my mind. Feb. 2nd.
I saw my plastic surgeon this morning and the lumpectomy reduction to my breasts is healing well. I asked about my pointy boob, and he said it could be corrected after radiation. I may see him before or right after, so no appointments were made. There's too much skin above my left nipple that had the tumor. If you pinch it, it's perfectly matched to my other boob, but at my age, not sure if I care at this point in time. It's not terrible, but it's so minor that I can't understand why they didn't notice it during surgery. I feel and look like a beat up alien! My identity is so torn up and I hardly trust the medical society's confidence in an
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trust the medical society’s confidence in any of this.
(My iPad locked up and couldn’t finish my last sentence).
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Hi Blair...I believe the nurse said it was preventative because your tumor was removed prior to chemotherapy. With lumpectomy, they try to remove all the cells. Chemo is making sure any strays get zapped, and to reduce risk of recurrence. Different stages of cancer require chemotherapy before tumor removal. In that case, the goal is killing the cancer and shrinking the tumor.
On another note - getting IV fluids and meds yesterday made a huge difference for my nausea today! Yahoo! Scheduled again for next Monday. Still wearing my patch and taking drugs, but actually functioning better than after my last round. It's a good thing.
Hang in there, everybody!
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Meow - I’m so glad you seem to be taking this 3rd round much better with your fluids and different drugs. What a good thing! I hope I haven’t scared anyone here blabbing about my side effects and how awful I feel, and how frustratedi am. I’ve always been probably too opinionated, but it’s my way of understanding things too. I think I will try drinking a lot of water prior to my dreaded next treatment, and definitely take the steroids (which are probably more for my back). I’m still scared I’m going to become super ill this last time. Still need to think about it. I know I need to get through this. I just didn’t expect it to get worse, and I still worry what it might be doing to my heart.
My taste buds seem to be much better but my back is still in pain and I’m so tired. I want to walk, but then it aggravates my back if I stand too long. Ugh!
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Meow...So glad you are feeling so much better.
Blair...You haven't scared anyone with your side effects. We all feel your frustration. It sounds like you are pretty close in deciding to continue with your final treatment. You are thinking "positive" about the water and steroids...that's a great start!! I hope you will be pleasantly surprised with minimal side effects if you give it a go. Hang in there.
Hope
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Meow I'm glad you are doing better. I admire the way you sought out additional care to meet your needs. It sounds like you have a responsive medical team. My recovery from round 3 was a little harder but I'm feeling well again. I'm doing everything I can to get strong for my final round which is Sunday Feb 4th.
Blair I think drinking lots of water and taking steroids will help you through round #4. Stay positive and don't give up.
nonahope You always give everyone sensitive and caring feedback. It's much appreciated.
Take care everyone.
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i confess to getting bored with water but drinking tons of herbal teas! I drink mostly in morning so i do not end up getting up as much at night
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Hi gals, sorry I haven’t been writing much but I have been reading everyone’s posts. Sorry to hear about your mom, klvans. No matter the circumstances, whether it’s expected or not it is extremely hard and sad to lose a parent.
Congratulations to everyone that’s done! I know we all can’t wait to be done.
My wbc was too low to get my 3rd infusion. The nuelasta brought my wbc up to 5.7 yesterday so. I got my 3rd infusion and as I sit here writing this my nuelasta on pro. Is clicking away. That’s quite a startling stick when the pod is applied. Now I’ll be prepared. I wonder if the nurses bet on who will come out of the chair when it sticks you. For a week after the nuelasta injection I felt fluish and since it is pretty widespread here in upstate New York, I have been worried about going anywhere. I really wanted to participate in the Woman’s March but decided I’d better sit this one out. I discovered Senakot S and I have to say it’s been very effective. Still have a jumpy stomach and reflux. I took a Claritin and I’ll take them for the next couple of days and cross my Fingers.
Good luck to everyone. Kate
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Thank you 19501952 for your condolences. It has been hard. The other day I almost asked my sister if she had talked to our mother this weekend. Then I remembered....
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Blair, yes the chemo is preventative because they got everything they could see, but it’s my understanding there could be micro cancer cells In our bodies they are killing. Maybe just semantics, but I don’t agree with how the nurse said it to you.
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Yes, I’m a bit disappointed in my team as far as communication. I have to pay $45 with an appointment to directly talk to my doctor. It’s one thing I hate about talking through other people when it comes to medical issues. Messages get twisted or missed. I only see my OM just prior to treatment and post lab. I don’t think they keep a record of my complaints, (although she does when I see her) and I had to tell them I had replied on the patient portal, so they weren’t paying attention to that either. I know they are busy, but one person should be checking the messages at all times. My daughter and son in law are both medical people, (not near me), who have both said the clinics and hospitals are short staffed to save money. It’s gotten worse in the last 15 years according to what they say. Lack of doctors - too many patients. It’s a mess. It causes exhaustion with these 12 hr shifts they have to put in.
I’m going to try a Claritin pill and see if it makes my back feel any better. This annoying pain should be slacking off about now, but it still gets stiff at night as I change positions, and still have to push my weight around with my arms. At the same time, I’ve gone through a garbage can full of Kleenexes due to my bloody dried up nose from the pain pills.
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Iris...I need to find some caffeine-free tea....any suggestions? I was told not to drink anything with caffeine as this adds to dehydration.
Kate...I have generic Claritin in my medicine cabinet, but haven't had to take it yet. Do you find it makes you sleepy? I've never taken it before. If I end up having to take it, I don't like "sleepy".
Kivans....It takes so long for us to "settle" after a parent passes. All the little reminders jump in to stir up those emotions. In the past 10 days, one of my best friends lost her sister, two friends lost their mother and another lost her father (at the age of 56). It's been a sad month for many. I hope each day gets easier for you.
Blair...Having worked in the medical field many years, I agree that things have changed so much. However, every communication (with whomever) is documented. It does seem that your medical team lacks skills in communication. And, having to pay $45.00 to talk with you oncologist is absurd! My oncologist has called me at home on numerous occasions to see how I was feeling. This is probably not the norm. Every time I leave the office, he always says not to hesitate to call if I have any concerns whatsoever. I wish you were in better hands.
Hang in there ladies!
Hope
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my dear november ladies i hope things pick up for everyone. sending you hugs.
please pray or wish me luck that i finish infusion of dose 11 tomorrow without any allergic reactions. i really want to finish all 12 doses.
I hope things look up for everyone soon!
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Kat...I will be thinking of you tomorrow...while you're getting dose 11 tomorrow, I will be getting dose #8 of Taxol. Wishing both of us an uneventful day!
Hope
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hope, i have a big stash of teas! Celestial seasonings makes a big selection. Red zinger is a fav, also lemon ginger is great. I also have lady grey decaf wich is more ......tea like! Some of them have a almost sweet taste without adding any sweetner.
Yeap got my stash! My med tends to cause dehydration so,i usually have several cups after my morning coffee
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Iris....Thanks. I'm heading to the grocery in a bit and I'll look for those, hoping they are caffeine free. I would like the flavored teas more than regular. I love iced tea, but not so much the regular hot tea.
Hope
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hope, i would be surprised if celestial seasonings is not in you store
I have fun trying the varieties
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Kat and nonahope I hope all goes well with your treatment tomorrow. I will be thinking positive thoughts for you.
Yes, nonahope, grief is it own journey. I know I was blessed to have such a caring mother. I also know she'll always be with me but I miss talking to her!
Celestial Seasonings makes lots of caffeine free teas. You are sure to find one you like.
Time to get my walk done. Have a good day everyone.
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thank you klvans. nonahope i will be thinking of you during infusion too. sending out positive energy too!
smiling regardlessof what the reason is. if it puts my mind at ease i’ll do it0 -
nonohope and blair, Claritin does not make you sleepy. I took it every day at the direction of my onc nurses. I also took two benedryl nightly also at the direction of the nurses. It was for bone pain, flushing and wonderful itchy rash on my hands. I just stopped them today, two weeks after my last treatment.
Blair it may take several days for the Claritin to help.
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I'm so sorry about your back pain Blair, I know it's difficult to tolerate that pain. you are right, the chemo therapy for corrective and preventive in the same time. my onco told me you can do surgery first or chemo. but it's better to get chemo to shrink your 2.5 cm (hope chemo do!) to less size. and it's better to evaluate if the chemo can kill your cancer cells or not.if not, we will change the chemo to another type (if you did surgery first, we can not monitor the respond of your body, doctor said). this is the MAIN ADVANTAGE to start chemo first. maybe you spend more time with protocol that not working well in your body. so the recurrence percentage will increase, even if you haven't node involved. this is what the doctor said. hope you will be fine.
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Nonahope - good luck today with your treatment. Another one down the hatch! I’m so envious that you seem to sweep through these treatments without any heavy side effects. I realize it’s no fun even with a few side effects. You have a wonderful positive attitude!
Meanwhile the whimp here continues:
I slept over 8 hrs. this morning. I never do that. The Claritin I took yesterday didn’t do anything, but as Orangedaisy said, it may need to build up in system. I truly think this back pain is pure tight muscle pain - inflammation. The nurse told me that the steroids would be given at treatment time, then I would have to take the pills afterwards. She said they don’t start them prior - if in fact it’s the chemo drugs causing this pain. (I still think it is because of the pattern of days and the intense of pain in which it bugs me). Then she said, if the steroids didn’t work that I would have to see my primary and have him figure out what’s wrong.
I have researched plenty of articles where patients have had back issues with chemo. It’s rare, but it seems doctors refuse to think chemo has any effect on your back! So, I guess I have to remain frustrated and ignored on this. I don’t need more medical bills right now with doctors not knowing what’s causing the inflammation. So, my plan is, if my back is better next week, then I will continue the last treatment with the steroids. Even though I dread how I will feel with my exhaustion. The steroids may work, may not. If my back doesn’t improve next week, I may skip last treatment, get my back checked (if it still bothers me) and just not worry about the recurrence rate as it’s not horrible to begin with at my age. My back could be getting permanently damaged for all I know. The cancer center acts like my complaining is no big deal, but chemo can cause some people permanent damage. (I don’t mean to scare anyone) Also -I’m still so exhausted after two weeks. That’s why I think my body is telling me to stop. I think my side effects may be worse on my body than the benefits. Maybe that’s why my OM is not trying to change my mind.
If I do ever have a recurrence - I will call it my “calling” and never go through this again!
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well hoping my med does not cause me new back pain, i have had too much of thait in the past, so far only minor back issues and really watching out for it
I will be starting physical therapy tommorrow but it will be done at the cancer center as they know my b8ack issues
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Bair if your back issues are due to inflammation the steroids should be effective. If they aren't then the back problems are due to something else. At least you'll have a starting point for finding the root cause of the pain.
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Kivans - I sure hope so on the steroids!
Iris - that is wonderful your cancer center has a physical therapy department. Mine mustn’t have such a thing.
I went to Big Lots this morning to grab a few things. My first trip out other than my ps visit Tuesday. The extra hours of sleep last night did seem to help me feel more normal, but here I sit, icing my back in my easy chair being worthless again! I think I’ll need a nap later.
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blair....i am very thankful that sloan opened a branch so close to me. Really looking forward to doing physical therapy there
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Blair that’s exactly how they did my steroids. IV at treatment and pills after for several days. I always had loads of energy Thursday, Friday, and Saturday andcrashed on Sunday and Monday after Wednesday treatment, but felt progressively better after that.
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