Skipped chemo today
I'm behind on filling you all in on how things have been going with me. I finished my 10 high dose radiation treatments two weeks ago tomorrow, then had my first chemo for this recurrence last Monday. I found that the plans the PA for my oncologist had explained to my husband and me were not at all what we had understood them to be. She had made it sound like I'd have chemo for two Mondays, then have three weeks off, and start all over again. Last week, I learned that I was to have chemo two Mondays in a row and skip only one week. I went thru chemo last Monday and didn't do too badly for the first few days. I had a bit of a muscle tension headache for the first two days. I was tired every day, but I did have a burst of energy one day before I had to settle in for my now daily nap. I was constipated the next day. The following day, I ate something I shouldn't have and got wicked diarrhea. Then I got constipated for another 3 days, finally ending that tonight. I had bad abdominal pain, like gas pains, almost any time I moved. Getting up and walking, I had to hold my gut in. Sitting down, I had to sit down gingerly. I was weak and shaky. My voice got hoarse, but I had no cold symptoms. I wanted to go to the ER, but my husband would've had to drive me and he had to be up early the next two days to meet with a handyman and run our granddaughter to various things while her mother attended a weekend course and her father watched their two year old during nap time. Today, I had my appointment at the Cancer Center. I was honest about how crappy I've been feeling. After explaining everything, the doctor looked at my blood work and saw it was basically okay, except for the WBC's. He told me that he was worried that if he gave me chemo today, I'd end up getting admitted later this week. I agreed with him, being shaky and weak. My husband discussed whether we could prolong chemo a week. The oncologist told us it wasn't the ideal thing to do as we want to bash out this cancer, but he implied that he had to weigh quality of life and quantity of life. I could read between the lines that skipping treatment could be risky to my life, but I didn't feel up to going through it today and just being worse off than I already am. He told me that he thought my voice hoarseness might be just from being weak. He says it happens in lung cancer patients due to some physical problems, but it was very unlikely to be anything else than weakness in me, and he's probably right about that. He prescribed Tramadol for the bad abdominal pain, then sent me downtairs for some IV fluids and potassium. Although I've been trying to keep up on my fluids, being so tired that I've had to nap over half the day away has prevented me from drinking as much water as I should. The fluids and the Tramadol have made me feel a little better. The problem now is that I'll have chemo the next two weeks in a row, and I wonder if I'll be able to handle even one of them. I understand that it's harder and harder with each recurrence, and this is my third time around. The schedule that I was originally set up for was Avastin, Gemzar, and Cisplatin the first week, just Gemzar and Cisplatin the second week, and labs the third week. I'll be seeing the doctor every visit for the first month, then less often as I go on.
The Cancer Center was very busy today. I joked that they must be having a half price chemo sale. Normally, everyone in there is around my age (70) or older, but today there was a young bald mother in there with about a two or three year old boy. I was amazed that he sat there quietly, entertained by a video game and some snacks. My grandson would be running all over the place. It was sad to see someone so young as the mother there, although I know that in a lot of other hospitals, that's common. It can't be fun dealing with a small child and chemo also.
Comments
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Oh Pinky, I'm so, SO sorry
Oh Pinky, I'm so, SO sorry you're having a hard time and wish I had something comforting to say, but I'm drawing a blank. You should not have had to go through this even once, much less 3 times. Your courage and grit is an inspiration to all of us.
I wonder if you're feeling extra-special bad because of the dehydration? You touched on that and said you feel better after having fluids, but I wonder if they could set you up on a regular hydration schedule. Last summer when I was undergoing radiation, I was too nauseated to eat or drink and got into really bad shape. I wondered if the end had come and couldn't find the energy to care if it had. They had me come in for a couple of rounds of IV fluids, because when your body has that big a deficit you can't entirely recoup it by yourself. I also drank as much Gatorade as physically possible. The intense hydration protocol pulled me out of that tailspin after a week or so, thank god, and I was able to complete my radiation treatments. I know it's not the same situation as yours, but I'm just offering this as an idea; I was shocked at how insidious dehydration can be and wonder if that's a factor in your situation. Best wishes my dear, we are all pulling for you. B
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Second Vote for Extra Fluids, etc.
Pinky,
I, too, am sorry to hear of how hard this chemo combination is for you. But I'd like to second DerMaus suggestions of extra fluids on a scheduled basis. When I started my second phase of chemo (Ifosfamide/Mensa/Doxorubicin), I knew that I might have more side effects than I had with Paclitaxel/Carboplatin.
But I was completely unprepared for how debilitated I was after the first infusion of the Ifosfamide/Doxorubicin. I could barely stand for more than a few minutes and I wasn't eating or drinking very well. I also had more severe nausea and some bad bouts of diarrhea. As this went on for a few days, I seriously doubted that I could actually complete this phase as planned.
When I dragged myself into the oncology office for my usual lab work the following week, the nurse immediately hooked me up to an IV and gave me fluids and antiemetics. I did feel better after this. I also went in three days later for another session of fluids. We decided to go ahead and just schedule these "topping off" sessions for the week after the remaining three treatments. The doctor also changed up the third day's antiemtic to a longer-lasting one and had me take some steroids the first couple of days I was home from the inpatient infusions.
With these changes/additions, I was able to get through the next three treatments easier than the first and stay on schedule, but it was still tougher than the carbo/taxol.
I can't imagine doing two treatments just a week apart. You're much braver than I am! But perhaps getting the extra fluids, vitamins and minerals on a scheduled basis after the chemo infusions would help to alleviate some of the awful side effects you experienced this time..
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I am so sorry. I wonder if
I am so sorry. I wonder if the worst of the drugs was the cisplatin. They used to use that instead of the carboplatin in conjunction with adriamyacin. When I couldn't take taxol the recommendation was adriamyacin and cisplatin. I was scheduled for a kidney test, etc. as it is rough on your kidneys. After reading up on cisplatin (some referred to it as cisflatten) I asked if I could have the carboplatin instead and the doctors agreed that was a good substitute. They used to give cisplatin as an inpatient infusion so it is a rough one to take. I had chemo for front line treatment but maybe ask whether carboplatin would be an ok substitute?
Since it affects kidneys I agree dehydration could be a big part of it.
Hope you feel better quickly.
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Hi Pinky!
Hi Pinky!
I continue to follow your progress and am sorry you have hit this 'bump' in the road! I can't imagine the frustration and perhaps fear associated with not being able to tolerate the treatment regimen.
As you know I can offer NO experience with radiation or chemo having not had either...
However, the ladies who have gone down that road always offer excellent advice...like above!
I will echo the advice about staying hydrated. I had weight loss surgery after my cancer, and have a heart condition. I was advised by both my doctors the importance of drinking decaffeinated beverages all day long or I would be faced with many of the symptoms you are dealing with. I suspect much of yours is related to treatment, but I can become weak, dizzy, fatigued, etc. on days I don't keep up with my drinking regimen!
And I almost had to laugh at your 'napping' - because of my heart condition I get so tired in the afternoons you would think I had partied all morning like it was 1999. I have to lay down for at least an hour or I can't function.It sucks to feel SO worn out and like you are 'wasting' precious time, but the body needs what the body needs! And sleeping is a 'treatment' I can deal with!
Anyhow know I am sending my thoughts and prayers.
Hugs!
Kathy
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Been thinking about you!
I've been wondering how you are doing and so I am happy for the update. I hate that you're having a time of it, but I guess it's always a struggle to get through for everybody and probably more so when it's not your first trip to the rodeo.
I remember how hard it was to drink as much as you are supposed to. I was never a big drinker to begin with, so it was a chore to choke it down and I don't think I could have done it without my husband constantly bringing me glasses and haranging me until I drank what I was supposed to. I still had such issues with constipation, but it could have been so much worse. You need your family helping you with this and if that's not possible, then getting "topped off" with IV's sounds like a viable alternative. You clearly need more than you've been getting to get through what you have to get through.
The issues with your WBC's dropping is a concern. The last thing you need is someone bringing you a cold or the flu right now, so as hard as it may be, I hope your husband is being careful about who he interacts with. My son and his family seem to always have at least one of them sick and after being so sick in January from exposure at Christmas, I'm a bit gun shy about spending time with them lately. We're babysitting Friday and my son is sick with a sinus infection, so I told him I'm coming over with my bottle of Lysol! ;-) Cleaning with it while my kids were little and always sick seemed to help keep me protected way back when, so I'm hoping it will help this time around! It's ok to be a germaphobe while in treatment!
I'll be keeping you in my prayers that you can get through this the rest of the way with a positive outcome that will make it all worth it. Don't hear no fat lady singing yet!
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Hi Pinky
Hi Pinky yes I too am sorry you are having a rough time. I hope and pray that the next sessions go more smoothly.
Next week hopefully if all my labs are ok I will be joining the clinical trial. I am ready for it as my bone mets are starting to complain and cause me more pain. It is time for the chemo and immunotherapy to put them to rest!!!
Anyway as we both go on this unwanted journey I hope that both of us have positive outcomes and that all the side effects will be worth it. Hang in there! xoxo
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Lulu, glad to hear you'reLulu7582 said:Hi Pinky
Hi Pinky yes I too am sorry you are having a rough time. I hope and pray that the next sessions go more smoothly.
Next week hopefully if all my labs are ok I will be joining the clinical trial. I am ready for it as my bone mets are starting to complain and cause me more pain. It is time for the chemo and immunotherapy to put them to rest!!!
Anyway as we both go on this unwanted journey I hope that both of us have positive outcomes and that all the side effects will be worth it. Hang in there! xoxo
Lulu, glad to hear you're going into the clinical trial. May it knock those bone mets right on their a**es ! Please do keep us posted, ok?
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Dehydration
My husband and I have discussed how it might be a good idea to come in mid-week for extra hydration. We'll see how it goes after the next chemo. I only got one bag of fluid on Monday plus a syringe of potassium, so i don't think I was down a huge amount. Still, it did perk me up a bit to have it.
To barnyard girl, I had carboplatin and taxol in 2010, then carboplatin and gemzar in 2017. At my next to last vfsit in that series, I developed an allergic reaction to carboplatin and was switched to cisplatin (still with gemzar) at the last visit. I actually feel that the gemzar is harder on me than the cisplatin. My dose of that had to be reduced after my first visit of round 2. I couldn't even move for a day, so the oncologist gave me an 89% dose for the next and all the remaining visits in 2017. I'm still on an 80% dose of that now and wondering if it should be more like 60% this time around. I'm sure I'm more frail now that I'm 70 and have lost about 14 lbs. (not on purpose).
My husband and I pretty much keep to ourselves so our biggest risk is when we have to babysit our grandkids, who are frequently sick. But fortunately, our daughter has cut back on our doing that since I was found to have a recurrence . We do go out once a week to eat and go out to shop for groceries, etc. Actually, I guess my biggest risk is actually in the Cancer Center waiting room. I was surrounded by hacking people this week, and there was a definite shortage of seats away from them. I wanted to tell some of them to go get a mask, but many looked like they wouldn't be smart enough to take the suggestion.
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Sending you good thoughts
Sending you good thoughts dear Pinky
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Hi Pinky, are you feeling
Hi Pinky, are you feeling better with the extra fluids? You are such an inspiration to me, and I'm sure to many others here as well. You are one heck of a fighter and you give so much hope to me also being USC stage4B. You are one remarkable lady! Sending you lots of hugs.
Dawn
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How I feelDM_K said:Hi Pinky, are you feeling
Hi Pinky, are you feeling better with the extra fluids? You are such an inspiration to me, and I'm sure to many others here as well. You are one heck of a fighter and you give so much hope to me also being USC stage4B. You are one remarkable lady! Sending you lots of hugs.
Dawn
I feel better psychologically. Sometimes I feel better physically, but a lot of the time, I don't. If I get at all behind on my Tramadol, the pain comes back something wicked. I took a nap earlier and got behind on the meds, and now I know what I'd feel like if I weren't taking them at all. I get super, super tired every time I eat. I slept until noon today, felt great when I got up, but then was exhausted just a couple of hours later. I forced myself to stay awake until after my husband and I went out to dinner (our Friday tradition). When we came home, I was going to get on the computer, but my husband had to look up something quickly. When he offered me the computer back, I was conked out on the sofa, just barely awake. I slept for another 3 hours or so. I'm certainly not getting much done around the house. I'm going to try to force myself to do some housework tomorrow, but I'm afraid I won't have the energy to complete it. My husband says he'll do it all for me, but he alreadyhelps out with vacuuming, and he's been on the run all week. I'm afraid he'll get worn too thin, too. I can just wait to see what the next chemo does to me.
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good to hear from you, pinky.
good to hear from you, pinky. Maybe you and your husband both should take the day off
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I think you both need a day
I think you both need a day off, too. I understand it bothering you though. Maybe just pick one thing, do it, and rest.
We'll be thinking of you!
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Trite but true
It's so hard to let go and not care about what we normally do, but during treatment you really have to let go and not sweat what doesn't get done. Your tiredness is telling you what hard work your body is doing fighting the battle and the best thing you can do to contribute is give yourself permission to rest as much as you need to and not feel guilty about it. Not easy, but necessary. Same goes for your husband. He can't take care of you if he doesn't take care of himself. If you need other family to help him out more, let them know so you can rest easier. They may not quite understand how hard this is for you both this time around and be relieved that there's something they can do for you to pay back for all the times you've been their for them. Sometimes people are just waiting for you to tell them what you need.
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Had Chemo Monday
I had chemo Monday after having a two week break. The PA saw me at the Cancer Center, and she was wary of giving me chemo, afraid that I was on the cusp of ending up in trouble and being admitted. She reduced my dose of Cisplatin and Gemzar, and I didn't get Avastin this week. I told her I was tired, and she told me that my blood work this week actually reflected how I was feeling last week. My hemoglobin was down to 9.7 and a bunch of the other blood work was off. She was afraid that if my hemoglobin dropped below 8, I'd have to have a transfusion. I'm going to have labs again Monday and will be asked to wear a red armband in case I need a transfusion. I've been super-tired today and I know I haven't gotten enough fluids into me because I keep falling asleep. I took a two hour nap today and then fell asleep watching a recording of American Idol. My dumb cat ate a bunch of begonia leaves that had fallen off a hanging plant yesterday, and my husband and I spent most of yesterday cleaning up the barf out of our bedroom carpeting. I wanted to tell her that I was the one who was supposed to be barfing, not her. Today, she seems to be recovering, which I'm very glad of, since she is a terror to take to the vet. The last time we took her, she peed, vomited, then had diarrhea in her cage just as we were getting home. She's a long-haired cat, which made the mess all the worse. I had to throw her in the sink and give her a bath, and I certainly am not up to that now.
The good news is that in spite of being so tired, my abdominal pain has almost totally gone away. Every week that I don't have chemo, it seems to get so much worse. So I guess I made the right decision in having it in spite of the PA's worries. She told me I have almost no chance of having it again on Monday due to my blood counts, but I'm going for testing and I'll probably end up getting more fluids.
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Pinky, thanks for the update
Pinky, thanks for the update and so sorry you are struggling with the chemo. You are such a strong woman.
Keeping you in my thoughts and sending an extra hug for baby kitty!
Love and Hugs,
Cindi
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