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NHL, no info.

alleycat42's picture
alleycat42
Posts: 16
Joined: Aug 2009

hi, i have follicular non-hodgkins lymphoma, grade 3 stage IV. i am thru 4 cycles of R CHOP and am due to have 2 more.

recently, while in hospital for a day visit, i was given my notes to take with me to the eye clinic. while waiting to see the doctor i read them and took some notes. after researching them i find there is alot more going on inside me than they are telling me.(i havent seen the doctor who is supposed to be dealing with my case since the first time i stayed in hospital, 4 months ago).

my questions are.... can they do that, not tell you whats going, playing everything down? are they not suppost to give it to you straight? anyone else have a simular experience?

personally i would prefer to know what is happening, i am not a child!

DennisR
Posts: 148
Joined: Sep 2009

Hi Alleycat42,

I've found the myself in the very same predicament over the past 9 years and two cancer diagnosis. I finally learned to be a whole lot more proactive in my treatments, researched my disease on-line, wrote down any questions I had and demanded clear, consise answers regarding my condition, prognosis, treatments, side effects, odds of success, etc. until I became very knowledgeable and able to communicate with either the Nurses or Oncologists I spoke with. Sometimes I didn't like the answers I got, but I find that I'm able to deal with hard facts and reality much better than I could being confused, frightened, unsure, and in the dark about what was going on. I researched every drug I was receiving in the R-CHOP regime, learned what to expect, and I watched and questioned everything they did to me.
I never allowed them to say anything I didn't clearly understand, including why I was only scheduled for 6 Chemo treatments when 8 are the proscribed norm for that particular regime and my type and stage of cancer. ( Which was also Stage 4 or 5 NHL) I wound up getting 8 treatments and the cancer went into complete remission for 8 years (I don't think there's any correlation between the number of years and the length of the remission, but what the heck). I did recur last May, but it is again in complete remission, after 8 more Chemo treatments, and a BMT/Stem Cell Transplant in February, 2009.
I think sometimes Doctors and Nurses become weary of trying to explain complicated and deadly diseases, treatments to people that haven't bothered to become proactive and knowledgeable about their conditions. I downloaded a list of Cancer medical terms (about 150 pages) and familiarized myself with those that appeared on my pathology and lab reports and was able to communicate with the Oncology Doctors, most of whom seemed to be in their own private little worlds until they learned that they couldn't just overwhelm me with BS any longer or at least learned that I could indeed keep up with even their most complicated explanations. Now, when I see them our relationship is much better and I never leave their office until I know and fully understand exactly what's going on in my body. It's even reached a point that they occasionally ask me to speak with some of their other patients, especially with regards to the fear of the unknown aspect of this disease, side effects, and coping skills.
Sorry to be so lengthy.
DennisR

alleycat42's picture
alleycat42
Posts: 16
Joined: Aug 2009

thanks for the reply,

when i was first diagnosed i was in spain and had little to do until i came back to ireland to get treatment. during the six weeks waiting i studied NHL in great dept and cancer in general to a lesser extent. i continue to look up everything they give me and am in touch with several people with the same cancer as me in different stages of treatment to compare notes. i know the questions to ask and when i get my notes i dont even have to ask questions because i can find out myself. but as i said i havent seen an oncologist in months, the nurse that deals with me fills me with all sorts of BS, and has lied to me on a number of occasions. its like she says, dont worry your pretty little head about it. i ask the questions i just dont get any answers.

my question, really, was CAN they do that. can they lie and mislead and fob-off? is there not some law that says they have to tell the truth when asked? (anytime i get my notes to take with me now they are sealled in an envelope). i guess they are used to dealing with older people who are proberbly better off not knowing what kind of a state they are in but im losing it and the next time im in hospital i am going to demand to see an onc or i aint leaving.

thanks again and keep up the good work.

Hestia
Posts: 26
Joined: Jun 2009

I am in remission as of April 09 (NHL). I totally agree that a patient needs to get all the information possible in order to discuss condition with medical staff. I know that I would speak with nurse who you feel is trying to fill your head with all sort of BS. I would tell her I have a difficult time accepting what she is telling me, challenge her comments and remarks and insist on seeing an oncologist. I made myself a notebook with all the terms, statistics, treatments, etc., that I could get on the internet. I found American Cancer Society and Leukemia/Lymphoma a good source. I am now in process of gathering information on late effects of chemo and/or treatment since I seem to have some problems in that area.

The one statement you made that I need to comment on is that "older people are probably better off not knowing what kind of state they are in." I'm not sure where you are coming from here. I am 73, be 74 in November and my need to know what is going on does not reflect my age. I want to live as much as someone years younger. I firmlly beieve we all, regardless of age, need to be as aware as possible, question as much as possible and not let any medical staff push us aside as to our concerns. We must be as involved as possible in our treatment. I would not be better off traveling thru this cancer journey not knowing what kind of state I'm in.

There are always exceptions, but hopefully those of us too ill right now to be concerned with more than getting thru treatment have a "on-hands" caretaker. I do not, my main caretaker lives 1200 miles away. She helps keep track of my appts, listens to me vent (daily) via phone and e-mail, and is always there for me. Yet I must go to all appts alone, deal with doctors and other medical staff alone. There are a great many of us doing this alone (physically alone at least), regardless of age.

Please don't discount us good ole folk. We too need information, guidance and support.
Thanks,
jacky

DennisR
Posts: 148
Joined: Sep 2009

Hi Alleycat42,
Thanks for the reply. Sounds like you're being as proactive and informed as you possibly can and I know it's difficult to be aggressive or assertive towards people like your Doctors and Nurses in whose hands you've essentially placed your life. That being said, it's still your life and you do indeed have a right to know the absolute facts with regards to your treatments, prognosis, side effects, etc. and they have a moral obligation to keep you informed honestly and completely. Sometimes they simply do not have the answers you are seeking and are in a wait and see what happens next situation, sometimes Nurses are restricted in how much info they are allowed to give you because they're Nurses, not Oncologists, or Doctors.
I agree that you should ask to see your Oncologist, Primary Care Physician, etc and get an appointment them with a list of the issues you are experiencing, anxiety, fear, confusion, etc and talk to them about it.
I don't mean to be admonishing you in what I'm saying here, so please don't take anything I say that way, I've experienced nearly everything you've posted about and have developed a zero tolerance for any sort of BS from any of them and I don't allow them to put me off or dismiss my questions as unimportant or too minor to bother with.
I have a very good Medical Program through the Veteran's Administration however, and see one Primary Care Physician, one Oncologist, and the same Chemo/Oncology Nurses every week and am on a first name basis with every one of them. I even have their Home Phone Numbers so I could call them 24/7, espwecially when I was somewhat critical, with any concern I have at any time. Most of them are Customers in my small business and I know their families, wives etc, and have even weighed their children on my scales at work and watched them grow from babies to seniors in HS or even graduate from College, get married and have children of their own. I'm very Grateful and fortunate.
Your Cancer, like mine is very treatable, the Oncologists have a great deal of success in curing it and you will do just fine. Keep up with what you're doing, you're on my prayer list.
DennisR
PS: I AM one of those old people, 68 years old and a two time survivor with all the bells and whistles, scars, and memories to prove it.

alleycat42's picture
alleycat42
Posts: 16
Joined: Aug 2009

i am blushing and my tail if firmly between my legs as i respond to your posts. i do whole-heartedly apoligize for the 'old people' comment, i wonder would 'youthfully challenged' be better? (only joking). it was a generalization and based solely on personal experience. consider it retracted fully.

thank you both for your advise and support. my ct scan results should be back when i go back for 5th chemo on thursday the 24th. for this i will be armed with a 100 questions and an answer-demanding attitude.

as for my humour, my only defence is, im irish.

keep up the good fight, ty again. alleycat

DennisR
Posts: 148
Joined: Sep 2009

Hey Alleycat,

No need to apologize, you were just attempting to express a legitimate concern based on your experiences, sometimes the written word can be misinterpreted or taken in unintended ways, my answer was no different than yours in that context. I'm not at all really offended in any way by anything you posted. It just sounds that way.
DennisR

mona zaky
Posts: 3
Joined: Oct 2009

Hi DennisR,

My mom 71 Y just got diagnosed with stage 4 NHL after living 8 years with Chronic Lymphocytic Lukemia. Now I need to ask you will she need to go for that Rituxan + chemo therapy? I am not sure did you also was diagnosed with CLL first? she never had night swet or lumps on the neck? Can she tolerate that treatment? . she has no pain now.
Mona

DennisR
Posts: 148
Joined: Sep 2009

Hi Mona,and Mom,
I had, and have, NHL, so I don't know a whole lot about your Mom's disease. However, if the Oncologist and staff determines that your Mom can withstand even a reduced cocktail of Rituxan and Chemo, I think I would be inclined to go ahead with it. Many people your Mom's age are in very good health, except for the Cancer of course, and can tolerate a whole lot more than we sometimes give them credit for. I'm sure they'll have her in the Hospital during the first few Chemo sessions at first to watch for any adverse indications, and they have an ability to counteract nearly any possible bad reaction to the drugs.
I'm sorry your Mother is having to go through this and I know how difficult these decisions are.
I pray for the Lord to provide you both with the guidance, comfort, and strength, you will need during these most difficult times in your lives.
I personally know several local patients and survivors, some older than your Mother, who underwent Rituxan and Chemo and are now Hale and Healthy and are in complete remission.
Hope this helps,
DennisR

mona zaky
Posts: 3
Joined: Oct 2009

I can not THANK you enough for talking with me. My mom has Stage 4 small Lymphocytic Leukemia. Started as CLL for about 8 Y and now it is NHL. I am not sure why they waited till stage 4. My mom never had night sweats or neck lumps or even pain. Did not loos weight or any skin rash so I am not sure if this is the correct diagnosis. however I needed to ask you about a drug that is manufactured in Canada and can cure cancer as they claim. It is called DCA. it is a white powder and they have a person that took it and was cured from NHL. The story is in DCA.com web site. Have you ever heard of it.I have to Waite to make the right decision for my healthy mom. she has good life now and is very afraid from that treatment. Let me know please if you have info about DCA.( Sodium Dichloride Acetate). THANK YOU VERY MUCH
Regards,
Mona

DennisR
Posts: 148
Joined: Sep 2009

Hi Mona,
No, I don't believe I've ever heard of DCA, but I would ask my Oncologist of his opinion of the drug, or treatment, or even if he has heard of it. They generally tend to keep up with the results of clinical trials, and new drugs on the market.
You also might try the Luekemia & Lymphoma Society website to see if it's mentioned there, they also have an online medical staff that you can contact. They seem very up to date with clinical trial info, and new treatments, etc.
Hope this helps you find the answers you need, good luck, give your Mom a Hug from me.
DennisR

mona zaky
Posts: 3
Joined: Oct 2009

Hi Dennis,
God bless and protect you in your journy.If we get DCA and my mom got any improvment I will let you know. She refused Chemo at this point.We will try the green way.
Thank you,
Mona

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