Posted by Line on Apr 19, 2019 8:16 pm
My 92 year old father has recently been diagnosed with non-Hodgkin Lymphoma Large B cell. The recommended treatment is 3 rounds of chemo followed by 3 weeks of radiation. I'm his daughter I'm very torn as to whether at this age he should have the chemo and the radiation or just the radiation. The oncologist did say at his age that the chemo could kill him, but that if he was in was father's shoes, he would risk it. My father is in good shape for his age, but nevertheless, has had some health issues. His treatment is scheduled to start on the 29th, but we still haven't made up our mind, and we can still cancel. Are the risks and side effects that he may encounter worth it considering his age?
I'm wondering if anyone knows someone who has gone through treatment at that age. Your comments and feedback would be VERY appreciated, as we are so unsure and worried.
Posted by cancertakesflight on Apr 20, 2019 12:37 am
It's a tough position to be in. No one really wants to be the person who has to make this kind of decision on someone else's behalf.
My question to you is whether or not your father is capable of making the decision. You indicate that you have to decide about your father's treatment, so I was wondering if that means your father is incapable of making his owns decision (chemo or no chemo). You don't say in your post if you are able to talk to your father to determine what he would like to do. If you can't talk to your father, does he have a do not resuscitate order? If he does, this could be a clue as to how he might feel about doing chemo.
You don't indicate what stage his cancer is at and does the doctor believe the chemo will cure him or is chemo just a way of slowing down the cancer growth.
There are a lot of factors to consider and it's not an easy decision.
Sometimes the deciding factor is quality of life. It doesn't sound promising that the doctor said that the treatment could kill him even if he says he would have his father undergo treatments if he was in your shoes. It's one thing to think you know what you would do, but until you have been in the actual position, reality might be a lot different.
So, I'm not sure what I would do, but I would consider the answers to the questions I have included in this post before I would make a decision.
Good luck to you and your father and please let us know what you decided.
Posted by ACH2015 on Apr 20, 2019 6:30 am
I'm sad to say I was in your position 3 years ago with my 84 year old father. Same cancer, and same treatments offered. The difference here is that your father's oncologist is suggesting because of your fathers overall health, its worth the risk to go through the chemotherapy treatments.
My father's cancer was in his brain, and was too advanced for curative or quality of life treatments to be used. That with his overall health taken into consideration. Like cancertakesflight asked, what are your father's thoughts on the treatments being offered and the risks involved? Does he understand the risks and benefits of treatment, and what are his wishes and thoughts after considering all the information?
I would suggest that the confidence and opinion instilled by the oncologist is a major factor here. If my father had been offered that chance, we would have suggested and encouraged dad to take the chemo and radiation treatments.
There is no right or wrong answer. However, for myself, being provided with all the facts is very important to me in any treatment decisions.I have been dealing with my own cancer for almost 3 years myself. Making sure you and your father understand all the risks and benefits are so very important, and consideration for his wishes, quality of life and desire to go through treatment must all be considered.
You are doing the right thing here. Seeking knowledge, experience and support is the best thing any of us can do in situations like this. I commend you for that. As I've said before, we are all unique in our circumstances, and no two people will react exactly alike to treatments or recovery. Gather all the information, discuss this with your father, the oncologist and make your decisions based on your fathers best case scenario.
I understand your being torn, and I hope the suggestions here and elsewhere help you make the right decisions with your father in moving forward.
ACH2015 - Andy.
Posted by Line on Apr 20, 2019 8:04 am
Thanks for getting back to me so quickly and I guess I'm not very clear in my message. My father is very sound of mind, and like me he's not sure what to do. I think he understands how sick he could be. He has stage 1A cancer. The growth is in a very awkward place though; in his upper left palate. In the fall of this year, the growth started there, and a biopsy was taken and it came back as negative. We were soo happy. Then about 1.5 month ago, it started again. So another biopsy was taken, and sadly it was diagnosed as cancer this time. It was very worrisome, cause we didn't know what it was, and I kept running to emergency to get it looked at, and he was prescribed many rounds of antibiotics. We live in a remote area, and our primary caregiver is a nurse practionner. It took a while before we were able to see a throat specialist, and then more time before the results of the biopsy came back.
What the oncologist said is indeed very scary, and he was talking about himself, (not his father) when asked what he would do. But like you said, until you are there, you don't really know.
Posted by Line on Apr 20, 2019 8:20 am
Thanks so much for taking the time to respond to my email and providing your input. Sorry to hear you are dealing with cancer yourself. It is such a terrible disease. I hope you have the upper hand and beat it!
I did provide more info about my father to cancertakes flight.
I agree with you that having all the facts before making a decision is important. However, we live 4 hours away from the cancer treatment center, and getting hold of the oncologist is by phone only, and never in real time. I feel like we are bothering them when I call and that time is of the essence.
There doesn't seem to be much info on the stats about the elderly like my father about the chances of survival and outcomes of receiving chemo at this age. It is a suggestion I have made to the cancer society when they contacted me to do a survey. It is unfortunate, as our society is living much longer and there seems to be so much cancer.
I hope that through this medium, someone who knows of a person who went through chemo in their 90's can respond.
Take care and stay healthy!
Posted by Cynthia Mac on Apr 20, 2019 8:27 am
This was the first time in Dad’s journey that I had to sit on the sidelines and allow him to make the decision. I knew what I wanted him to do, but, as I said to him, “Dad, I can’t help you with this one — it’s your body, it’s your choice.” Ultimately, Dad’s philosophy was, “They recommended it for a reason, and I can always stop the treatments if they make me too sick.” In that moment, I think I understood fully how HE felt the day I told him I was going to get married at age 20!
You indicate that your Dad is able to make his own decisions. We can care about them, we can care for them and we can help them gather information, but as long as they are able, we have to respect their right to make their own decisions. After all, they’ve still got a couple decades of life experience on us!
I wish you both well through this agonizing decision process!
Posted by ACH2015 on Apr 20, 2019 9:56 am
I looked up some information that backs up looking at all the factors and not just the persons age re Large B cell NH Lymphoma treatments:
From the article:
Background: Very elderly patients (≥80 years old) with non-Hodgkin's lymphoma (NHL) frequently have co-morbid conditions and are generally excluded from clinical trials or even from treatment. The optimal treatment of these patients is unknown.
Patients and methods: We reviewed the records of 109 patients ≥80 years at diagnosis of NHL (65 F/44 M; median age: 84 years, range; 80–95).
Results: Seventy-eight patients (72%) had aggressive NHL, 25 (23%) had indolent and NHL, eight had unclassified disease. Advanced-stage disease was noted in 54%. Forty patients (39%) had a poor ECOG performance status (PS), and 52 (49%) had an intermediate or high risk International Prognostic Index (IPI). Seventy-nine patients (72%) were treated with chemotherapy and 37 (34%) with radiotherapy. Initial chemotherapy consisted of chlorambucil in 15, oral etoposide in 2, and combination protocol in 62. Only 16% of patients received full-dose therapy, and only 50% completed ≥6 cycles of combination chemotherapy. The overall response rate for the 69 evaluable patients was 84% (complete 56.5%, partial 27.5%). Overall 5-year survival for the whole group was 39%, and median survival time was 26 months.
Conclusion: A high response rate can be achieved in very elderly NHL patients despite aggressive histology, poor prognostic features, and reduced doses of chemotherapy. Age alone should not be a contraindication to treatment.
Sometimes we don't find people dealing with exactly what we are going through. We have to find the best information we have to help us make our decisions. I want to reinforce, you aren't bothering the oncologist when it comes to your father's or anyone else's life. Like the rest of us dealing with cancer, these are important decisions you have to make. If you feel your questions have been answered, that's great.If not compile your questions and satisfy your needs.
I am in Ontario, and I know that video conferences can be arranged from a hospital near to you and connected with the oncologists so that you can conference and ask any questions you or your father have from afar.
Any one of us undergoing cancer treatments can suffer side effects that range from mild to severe - even life threatening. That's why its so important to look at all factors here, and not just the age issue. Reducing, changing, deferring treatments are issues that affect many of us going through any systemic treatment regime.
Oncologists can only offer their educated opinion given what they see, have tested, found in results and have observed in their practice and discussed with their peers.
I hope you get a response from someone that has gone through chemo in their 90's to help you in decision making. But like I said before, we are all unique regardless of similar circumstances such as age factors.
ACH2015 - Andy.
Posted by Line on Apr 21, 2019 1:10 pm
Thanks for thé info Andy. There's lots of information in there. I did read some of it, and I gathered that they still don't have much stats on patients over 80.
Thanks again for your response and support.
Posted by Line on Apr 21, 2019 1:20 pm
Thanks for your message. My dad will decide on his own if he wants to undergo chimo, but he does rely a lot on me for information and guidance. I think if I said yay or nay, he would follow that path. But he still has all his marbles and is very sharp. We are meeting at our local doctor's office tomorrow, and will make our final decision after that. He did tell me a few days ago, that God will let him make his decision. However, at this time, I think we may be leaning towards radiation only. The thought of how he could be sick as a result of the chemo is very scary, and almost unbearable.
How did your dad do with the chemo treatments?
Posted by Cynthia Mac on Apr 21, 2019 5:01 pm
He did get a little neuropathy, and he, like others, complained about vision being “off” - I don’t know, but wondered if this could be one of the symptoms that could contribute to the nausea.
He still doesn’t feel 100%, but he also has a chronic pain issue that could be preventing a full recovery.
The cancer treatment centre staff were phenomenal.
I wish your Dad well with his decision - it’s not an easy one to make!
Posted by Line on May 11, 2019 8:48 am
Dad did decide to go on with his first round of chemo which was on April 29th. It was a very worrisome and scary time for us. The two day treatment themselves went very well, and we were quite relieved. The day after treatment there was diarrhea, and I had to bring him to emergency cause he had a hard time voiding. He had this issue beforehand, but the treatment just exasperated it. Of course there was nausea, but we were able to control it with the meds. So for the first 4 days after treatment, I thought if this is it, we'll be lucky. But around the 5th day, when he stopped taking the prednisone, more side effects started kicking in. He's been feeling sore all over, headaches, and lots of trouble with digestion. (This is also an issue he had before chemo, so of course made worse post). He's still.eating though, just a lot less. He's been feeling very week and tired, bit we try to go out or a little walk every day.
Also, he has a urine infection, so now he's taking antibiotics for that.
All to say, that at this point we're unsure if he's going to proceed with the next round of R-CHOP, which is scheduled for May 23rd. Wondering if it's worth it. If he doesn't, then it will be radiation.
Posted by ACH2015 on May 11, 2019 9:14 am
Thank you for keeping us in the loop with your father's treatments. Hopefully the side effects will be short in duration and strength and appetite improve.
You are so right, we all have to weigh and balance our treatment decisions before - during - and after each. Reassessment is a vital part of treatment.
I have always done what has been suggested by my medical team. I find it important to know all the information, weigh it and move forward with the plan that sits well after being digested in thought.
I have had many surgeries, treatments and recoveries. One thing I'll share about me is that I had a recurrence in 2017. 2018 was full of reassessment and the opportunity to participate in a clinical trial involving immunotherapy. The immunotherapy did not work, and resulted in surgery #4.
I do not regret in any way participating in that clinical trial. There would always have been that nagging thought "what if" especially should another recurrence be in my cards. I can't live with "what if's" or "why didn't I do that's" in my life.
My balance has always swayed toward doing everything suggested to me from a treatment perspective. No regrets later, be the treatment successful or not.
There are no wrong decisions really. Provided you have all the information in front of you to make the best decisions for yourself.
I've always trusted my instincts. That's why we were born with them.
Keep well, and I'm sure your father will trust his instincts in moving forward.
ACH2015 - Andy.
Posted by Line on May 11, 2019 8:18 pm
Dad is scheduled for two more rounds, and I was wondering if from your own experience will it get easier or harder with the next treatments?
Posted by ACH2015 on May 11, 2019 8:50 pm
Some of my side effects were cumulative and did increase as treatments progressed. The fatigue and bone pain were the most noticeable. However, I became more able to tolerate the effects with both medications and knowledge of what was to be expected. I have to say, my chemotherapy drugs (carbotaxol) are a different combination from your father's R-CHOP, so perhaps different side effects will present.
The good news is that your fathers nausea was well managed with medications, perhaps digestion could be improved with medications, smaller more frequent portions, ensure or similar meal supplements to increase calorie and energy levels. Hydration and any regular body movements are important to help flush out the chemotherapy and help reduce side effects as well. Checking with a dietitian at the cancer center could help as well.
Another important thing to remember is that the oncology team will monitor your father's blood work and many other factors to keep on top of his ability to tolerate further treatments. The main reason that chemo treatments are spaced out at specific intervals is to give your body the ability to recoup and recover from the previous treatment. The oncology team will look at your father and his physical and mental status before Round 2. At times, a persons dosage or schedule may be adjusted depending on their unique needs. That is something that is carefully assessed.
So, my answer is somewhat mixed. Some side effects became more challenging, but preparedness, medications and coping were of great benefit to help work through them.
It is very hard to watch a loved one undergo treatments that bring them down in body ans spirit. That is the tough part of fighting cancer with the systemic treatment process. Remember that good cells are affected in controlling and ridding the body the cancer. The treatments are designed to kill the cancer, and the affected good cells are able to regenerate themselves.
I hope this helps both you and your father.
Keep well, and take care for both you and your father.
ACH2015 - Andy.
Posted by Line on May 12, 2019 6:11 pm
We live 4 hours from our Oncology team, and his next treatment is scheduled at our local hospital. And as far as I know, the only thing that will be assessed is his blood the day before. I don't believe our Oncology will be I touch with us. I sure wish someone would examine him though to check how's he doing and if they think he could withstand the next round. I'm very concerned with his bladder issues. I am planning to call the oncologist nurse tomorrow to.ask if there us something he can take.to help.with digestion. He has been eating small portions at a time and taking small walks. It is hard to see him weaken and go through this!
Posted by ACH2015 on May 13, 2019 7:18 am
Since there is a distance / travel issue with the oncologist, I'd suggest having your father assessed by the Nurse Practitioner that is closer by.
Your father's age is an issue, however all of us going through chemo etc... can need additional care and attention for our unique set of circumstances.
Digestion, eating, bladder and any other areas of concern can be addressed with your Nurse Practitioner. The side effects and complications are unfortunately part of the process. Some of us sail through relatively free of these issues, others - not so much.
It is very hard to watch someone weakened and fatigued with chemo treatments. But remember, as long as the person can tolerate the process, the aim is to kill the cancer.
When my treatment process started I was 56. After 6 rounds of chemo, I could not get out of a chair unassisted, slept 18 hours a day and suffered many other symptoms.So age is not a factor in many common side effects. But it is important to look at the whole person, and monitor and seek assessment of any problems that arise for intervention to reduce or control them.
I am not sure if anyone mentioned "chemo brain" to you. Many of the chemo drugs can cause memory issues and cognitive impairment. I mention this so that you understand what may be causing any mental health issues that may occur. This too is a potential part of the process you may not have been made aware of.
Use the resources you have at hand, and hopefully this will help to keep on top of any issues at the lowest level.
ACH2015 - Andy.
Posted by Essjay on May 13, 2019 1:04 pm
i had a blood test the day before chemo and saw the doctor each and every treatment. The first time was very thorough - is had a full physical exam, and after that the doctor examined me only if there was a particular concern. The nursing staff were great and asked lots of questions about my well being and symptoms - they want to know everything, nothing should be missed.
My oncologist was keeping an eye on progress from the electronic records and the local doctor checked in with her a couple of times when I was experiencing issues. There was no need to see the oncologist - the local doc had everything under control.
Not having to travel far made a big difference to me - my husband could drop me off and go to work, and it wasn’t far to my bed when I was feeling rough post chemo.
Having the same staff each time was nice too - they get to know you well.
i hope this reassures you a little - your Dad is in good hands.
Posted by Line on May 16, 2019 1:41 pm
Dad was debating whether to go forward with the next round, but he is feeling so much better now, (it's like a miracle!), so he's decided to press on.
His next treatment is on May 23rd, and on the 22nd he will see a doctor and have his bloodwork done. I will be discussing his issues with the doctor then.
As far as the "chemo fog' he's been pretty good. He has mentioned being a little forgetfull, but nothing major.
You are correct, it is very hard to watch someone suffer and being so fatigued. I live with my parents, and I'm the only one, so they mean the world to me.
Thanks again for your response and support, it is very appreciated!
Posted by Line on May 16, 2019 1:48 pm
Thanks for your response and reassurance. I called our oncologist and asked if there was someone who would check my dad other than the bloodwork being taken the day before, and she did say that some hospitals have internist, but didn't know if our local hospital did. So I called our hospital, and was told that after my dad has his blood work done, he is to see a doctor for an exam. This is a new process at our hospital. It's a good thing I called, because the nurse had forgot to tell me when she called to schedule his next round of chemo. I was a little upset about that.
Anyways, dad is feeling much better, so that's encouraging, and it's looking like he wants to go forward. I sure hope it won't be too difficult on him.
All the best to you!
Posted by Cynthia Mac on May 17, 2019 8:57 am
This is hard on us - I hope I never have to see Dad in “little blue paper slippers” or a gown ever again.
Your parents are very fortunate to have you so close to them!