Last chemo... to do or not to do...that is the question
OK, please let me preface this by saying that I know that everyone is different, I know that the chemo aids the radiation, and I do know that ulitmately this is my husband's choice. With that being said; My husband's last chemo treatment is on the 17th of April, a week from today. He has been really on the fence since last chemo treament as to whether he should do the last one. When he was having issues with his creatinine levels both the radiation oncologist and the oncology head nurse told my husband that if he couldn't finish the chemo course he would have a very good shot at achieving NED. He was able to do the second round. Here's the deal though; over the weekends he pushes fluids like crazy. I help him and witness the fluid intake. Every weekend without fail his creatinine levels go wonky. This time was the highest it ever was. He's stable as long as he gets fluids everyday; which I am a huge fan of. This second round was even a lower dose. He told me that he is very worried about his kidney function in the end. I am too. He has not seen or talked to the actual oncologist for weeks. I am not exaggerating. He sees the rads dr every week. The last chemo day the ocologist wasn't even there. He had to talk to the nurse (which is fine with me). But, that also tells me that seeing the rads dr is more important because the rads is the main factor in getting this cancer out. He's really torn. I have read some people throw the kitchen sink at this, I have read that some people don't even have chemo they have more radiation but no chemo, I have also read that some people cannot finish chemo for other health reasons. I have read that some people are ONLY prescribed two chemo treatments and are healthy. I have read that the treatments prescribed are overtreating the symptoms. I have been told that chemo ruins the good in the body. I have not read if someone just says Enough, I have had two chemo treatments and that is enough. He is 9 treatments away from being done. His tumor is shrinking and is smaller every week. So we know that the treatments are working. How much does the chemo really aid? I want to help him make a good decision. I don't know if anyone can really say yay or nay but it's quite a dilemna. Also, please no horribly negative talk. We are NOT saying that he is refusing the last treatment. I am just asking for advice. Thanks!! You have all helped in ways that I will never be able to fully vocalize.
Comments
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It is utter bull* that your
It is utter bull* that your chemo oncol is not making himself available. It is his job to review those test results and consider the impact of the medicine he has prescribed. Call, and don't take 'not available' for an answer. He has an on-call backup.
It is very good if he is getting daily hydration infusions. I love my infusion team, it got me thru.
I was scheduled for eight carbol/taxol, was having extreme reactions by number five, was seriously ill by number six, and only got seven. I was told that by number six, 95% of the benefit had been obtained. But, it all depends on the patient's condition. I was fighting blood clots, and depleting me with chemo was making the clot fight more difficult.
For all of that, I am now three months post, and will spend the day outside doing yardwork. This does come to an end, it does get better.
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THANK YOU!!! I have been so
THANK YOU!!! I have been so unimpressed with the oncologist from the get go. She is gone all the time. Orders us to do these things but isn't there to answer questions. I feel bad for her nurse because she is the one that has to play telephone (literally) with the dr. about reslutls, whether he can do chemo, etc... I expected after the last round that he would meet with her. NOPE. She'll meet with him the day he supposed to get chemo. He's had two, one was the full max dose and one was a little less than 1/2 of the max dose so he's had a lot of chemo. Plus, we have been told it still "cooks" even after the chemo week is over. He is getting infusions every day, that's how we keep the creatinine levels down. Without them, the levels are wonky. It makes me very nervous. I did tell my husband that he needs to tell them that he wants to meet with the oncologist before monday. We will see what they say.
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FWIW
My husband skipped his last of three chemos, because he developed an all over body rash and felt awful. His chemo oncologist thought he was being kind of wimpy since his numbers were technically okay, but he allowed it.
The chemo was recommended in the first place because he had 4 lymph nodes involved, one with extracapsular spread. So, as far as whether people are being overtreated, I would think it depends on the pathology.
In any case, it does seem unreasonable that your chemo doc is unavailable to answer your questions, so perhaps you can ask to speak to another one, since the info you have (cancer details, creatinine levels) should be enough for anyone to offer an opinion.
So, my husband was T1N2bMO. He had surgery to remove tumor, neck dissection with finding of 4 nodes, one extracapsular. He had 33 radiation treatments and 2 of 3 big chemos. He is almost 4 years out with no major issues, taste and saliva nearly normal. Oh yeah, his thyroid went kaput so he's on synthroid. I can't say I don't still worry if skipping that last chemo was a mistake, but so far, so good.
Good luck with your decision.
Helen
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I also missed the third round, due to toxicityMMDowns said:THANK YOU!!! I have been so
THANK YOU!!! I have been so unimpressed with the oncologist from the get go. She is gone all the time. Orders us to do these things but isn't there to answer questions. I feel bad for her nurse because she is the one that has to play telephone (literally) with the dr. about reslutls, whether he can do chemo, etc... I expected after the last round that he would meet with her. NOPE. She'll meet with him the day he supposed to get chemo. He's had two, one was the full max dose and one was a little less than 1/2 of the max dose so he's had a lot of chemo. Plus, we have been told it still "cooks" even after the chemo week is over. He is getting infusions every day, that's how we keep the creatinine levels down. Without them, the levels are wonky. It makes me very nervous. I did tell my husband that he needs to tell them that he wants to meet with the oncologist before monday. We will see what they say.
The medical oncologist assessed that the 3rd cisplatin round was already too toxic for me, due to my condition (deteriorated). However, 1 month after I finished radiation I had the follow-up chemo with 5FU and carboplatin. Cisplatin was too toxic due to hearing loss.
So couple of things: firstly: check if switching to carboplatin is an option (not so nephrotoxic). Secondly, the medical oncologist is the best to assess his condition and decide if cisplatin is too toxic, or if can substitute with carboplatin.
About the efficacy: I started the first round of cisplatin 3 days after the first dose of radiation (so radiation effect hadn’t kicked in at that time). My lymph node (easy to palpate at the neck) decreased by roughly 50% the next day after cisplatin; after the second round of cisplatin, I couldn’t even feel it.
I am now almost 5 years post diagnosis.
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I finished
I had all 3 of my chemos - and all 30 radiations. I suffered, and my radiation onc gave me a week off every 2 weeks.
I don't recall the med onc involved a whole lot - I know I didn't see him every week like I did the rad onc.
Those 2 weeks off made all the difference - I would not have been able to complete otherwise.
I did have surgery for the tonsil cancer first, before radiation and chemo.
For the 2nd cancer - I only had surgery - as the margins were clear (but close). I am chosing to save radiation for the next one
Lorna 2007 & 2014
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Carboplatin is not an option.corleone said:I also missed the third round, due to toxicity
The medical oncologist assessed that the 3rd cisplatin round was already too toxic for me, due to my condition (deteriorated). However, 1 month after I finished radiation I had the follow-up chemo with 5FU and carboplatin. Cisplatin was too toxic due to hearing loss.
So couple of things: firstly: check if switching to carboplatin is an option (not so nephrotoxic). Secondly, the medical oncologist is the best to assess his condition and decide if cisplatin is too toxic, or if can substitute with carboplatin.
About the efficacy: I started the first round of cisplatin 3 days after the first dose of radiation (so radiation effect hadn’t kicked in at that time). My lymph node (easy to palpate at the neck) decreased by roughly 50% the next day after cisplatin; after the second round of cisplatin, I couldn’t even feel it.
I am now almost 5 years post diagnosis.
Carboplatin is not an option. This may sound like I am being snotty but she has stated by words and actions that Cisplatin is the ONLY chemo drug she will entertain. I was so upset before the second round because they scared the crap out of me when they called me to tell me that his creatinine levels were so elevated. Then the next week acted so casual about the levels (which were still elevated) and said he could do the chemo as long as fluids were given every day. Without fluids we can't control the levels. He also has ringing in the ears still and we told her she claimed she never said there could be irreversible damage to the ears. Which she did state. I wrote it down. Basically what I am saying in the ramblings is it's "her way or the highway" kind of attitude. We have never been told that he has to have a follow up chemo. It's 3 rounds and 35 rads and thenm done. I think at this point the chemo is and will continue to aid the radiation.
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Oh! I hope there isn't a nextlornal said:I finished
I had all 3 of my chemos - and all 30 radiations. I suffered, and my radiation onc gave me a week off every 2 weeks.
I don't recall the med onc involved a whole lot - I know I didn't see him every week like I did the rad onc.
Those 2 weeks off made all the difference - I would not have been able to complete otherwise.
I did have surgery for the tonsil cancer first, before radiation and chemo.
For the 2nd cancer - I only had surgery - as the margins were clear (but close). I am chosing to save radiation for the next one
Lorna 2007 & 2014
Oh! I hope there isn't a next time for you! He gets 2 weeks off every time he had chemo. Rads are every day Mon-Fri. They technically say 3 weeks but it's 2 weeks off, the 3rd week is the week he gets chemo. The last time was a full 3 weeks because his white blood cell count was low and the creatinine levels were all over the place. He did OK the last time. Full of meds but OK. It's not so much the side effects at that time that bother us. It's the long term side effects. He has diabetes that so far he has been able to manage with meds and diet. Well now that may not be an option. His sugars are really high because he has to drink these super sugary drinks for calories and portein. Then the kidney function. That's the biggest worry. So far we hae been placated with "we will monitor you every day." Well, they did. The first week of the 2nd round. That was it. This is a hard place to be. We just want to be done. 8 more treatments to go
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Was Scheduled For..
Seven rounds of Cisplatin. Right up front my medical oncologist said that seven treatments was ambitious, and that most ended up with either five or six. He went on to explain that most of the studies were based on five treatments.
After six treatments my nausea got cranked way up, and I was feeling pretty terrible. We made the decision to skip the seventh treatment and it turned out to be the right call as my condition worsened and I was in pretty rough shape on the day my seventh treatment was scheduled for.
We have no regrets about skipping that last treatment, no doubt the rads and chemo teamed up to kick my butt nice and thorough like.
My Medical Oncologist was absent quite a bit too, but he had a great RN and team of nurses who met with me religiously and I would get feedback from the Oncologist if I requested it. We were a definite team and it is wrong if you don't have that same experience.
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Always love your input. ThankJoel4 said:Wishing You Guys....
The best no matter what you decide and as always, We'll be praying.
Always love your input. Thank you for kind words. I think we have a great team of oncology nurses and infusion nurses. Maybe I'm in the wrong and that's the way the oncologists work. Especially if he only has 3 rounds of chemo. I'm sure if it was more he would see her more. I don't know... I absolutely think the chemo and rads he's done up to now has definitely gotten him and good. Which, crazy enough, is what we want. Shrinking of the tumor every time he sees the dr. I think the hardest part is that there are NO promises no matter what. That's the hardest part of it all. The only thing that gives me some tiny bit of comfort is the fact that my husband was told when we weren't sure if he could even go forward with the chemo is that he still has a good shot of NED. So that doesn't change if he decides not to go ahead with the third. He'll talk to his rads dr tomorrow and then either Deb the oncology nurse or the actual oncologist. I'm a firm believer in trusting your gut feeling. So hard. Thank you for your prayers. It all helps.0 -
We're not crazy with my hubby
We're not crazy with my hubby's medical oncologist either. But, her nurse practioner was heaven sent. I don't know what we'd do without her. She is upfront and honest but available and kind too.
I do not understand why your doctor will only consider Cisplatin. Ours said from the beginning that if Cisplatin proved to be too much, they would switch to the Carbo one. Yes, Cisplatin is considered the "gold standard " but quality of life had to be taken into consideration too.
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She has never mentioned carbo
She has never mentioned carbo and When my husband asked the last time she said she has never used carboplatin and only used erbitrex (sp?) a few times but wasn't that wild about it and we had to go to the hospital to get it done. Her plan was a lower dosage and monitoring him. That's it. I love our nurse practitioner as well!! She is great and Deb, the oncology nurse is wonderful as well. Not to mention the infusion nurses. I'm not sure what we would do without them. They are the ones that have gotten us through this journey. Big decision needs to be made this week.
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Demand
Demand to see your oncologist or who is on call. This should not even be an issue for you guys. I had 7 weeks of Cisplastin and 35 rads tx. I had my Radiation and Heme oncologist cell phone numbers and was to free to call them when ever I chose too. Also discuss this with your nurses, they will call your oncologist if they believe the is a true concern. I had just slightly elevated BUN/Creatinine and really low platlet counts, they almost stopped my treatment but we continued on with 2 more weeks of treatment and shortly after that my labs stablized. Its time to grab the bull by the horns and voice your concerns. Fight the Fight. There is light at the end of this tunnel. I'm not trying to be evil, just saying to start demanding some answers from someone.
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He's going to talk to theSprint Car Dude said:Demand
Demand to see your oncologist or who is on call. This should not even be an issue for you guys. I had 7 weeks of Cisplastin and 35 rads tx. I had my Radiation and Heme oncologist cell phone numbers and was to free to call them when ever I chose too. Also discuss this with your nurses, they will call your oncologist if they believe the is a true concern. I had just slightly elevated BUN/Creatinine and really low platlet counts, they almost stopped my treatment but we continued on with 2 more weeks of treatment and shortly after that my labs stablized. Its time to grab the bull by the horns and voice your concerns. Fight the Fight. There is light at the end of this tunnel. I'm not trying to be evil, just saying to start demanding some answers from someone.
He's going to talk to the rads dr tomorrow and talk to the nurse practitioner as well. She workd with the oncologist and I like her so much. She's great. I'm absolutely ready to demand answers. So is my husband. We're down to 8 treatments and we want to end on a high note. Thanks for the words of encouragement.
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Our team does not consist of
Our team does not consist of the ENT that first treated my husband. We will only see him IF, god forbid, the chemo and rads didn't take care of the cancer and my husband would have to have surgery. We talk to the radiation oncologist and the oncologist. That's it. He goes in today for fluids and rads and has his weekly meeting with the rads dr. He will talk to him. Good luck today!!
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So my husband talked to his
So my husband talked to his rads dr today. He first told my husband that there is no data that shows a difference between 2 rounds of chemo or 3. He then told him that he sees more of a reduction after the chemo and what is left of the tumor would benefit from the chemo. But he also told my husband that the radiation still works for 4-8 weeks after the treatments are over. He also told my husband that the kidney situation should be factored in his decision. He mentioned fluids, etc... Mixed signals. Again. We are even more on the fence than before. This is also about quality of life afterwards. What happens when we don't go in for fluids everyday? When we take care of the levels at home we seem to "fail" in their eyes. He gets lectured again about his levels, and kidneys, etc... What if he decides not to do it? What gurantee do we have that the full treatments works? What guarantee do we have if he does 2 rounds and not three? There is none. I see and read stories from all of you; some didn't or couldn't do all the treatments are have been NED for years. Some of you have done multiple treatments to the full extent and it still comes back. How does he make such a difficult decision? Where is the line? Messed up kidneys but no cancer? Kidneys are fine but the cancer is back or they treatments didn't get it all.
I told him to ask about another reduced dosage. Something has to be better than nothing, right? Friends, I don't have cancer and I am feeling so much anxiety over this. I cannot fanthom how you are doing this. How do you make tough decisions? Is it as basic as "go with your gut, your instincts?" Are there any reassurances that helped you? This just sucks.
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Yeah. He gets fluids every
Yeah. He gets fluids every day, especially during chemo week. we have the support of the chemo nurse and that's about it. I do love the nurse practitioner but we have only met her once. He's asking for a meeting on Thursday. thats all we can do now. That and pray. Very tough decision to make.
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Continue hydration infusion
Continue hydration infusion post treatment, it will aid recovery. We tapered from daily to every other, but it was over the course of six weeks (post). It will also allow your nurses to keep an eye on things.
Part of this is just learn by doing, but part of yours is lack of support. I saw my oncols every other week, but they coordinated so they alternated, thus I saw one weekly. The week I didn't see the oncol I saw their PA. We also had phone numbers for everyone, plus Kaiser has a communications app which is waaay better than their website. An email got seen by all the team, with a primary responder. My ENT was pretty much not a factor after we ruled out surgery. He did do the final NED PET exam.
Keep something in mind about support. There is an old joke about medical school.
Q: Do you know what they call the lowest scoring student in every medical school class?
A: Doctor.
Know what you want, and ask for it. If they won't provide it, force an explanation.
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