Need information and insight

menoozie

Hello everyone,

This is lengthy, so I apologize in advance. I found this site today and will confess I’ve already committed the two cardinal sins, but am hoping you will still indulge me and allow me to ask a few questions.  My two “sins” are 1) searching the internet regarding symptoms I’m experiencing and 2) presuming a diagnosis before I have one.  That being said, based on said searching – whether symptoms individually or together – the recurring answer is the likelihood of Hodgkin’s Lymphoma of some type/stage or other.  I won’t bore you with all the symptoms that align with that possibility but ask that we all presume for the time being that I am correct. 

Knowing these are very broad question due to no diagnosis and the myriad types and stages of Hodgkin’s: 1) how quickly did you start treatment after your diagnosis; 2) if you had surgery, how soon after did you start chemo and/or radiation 3) if you had chemo, how often and for how long; 4) what was the severity of your reaction/how debilitating was it for you?  My reason for asking these particular questions – we made major life changes last year as we began construction on a new house in April while living over 1100 miles away; my husband retired in July after 40 years as a civil engineer in private practice; sold our home of 34 years in October; and moved from our hometown for 44 years from Mississippi to North Dakota in December!  (Our youngest son and his wife had asked us to move up here when his dad retired – we have two other children in two other states.)  Terrible time to move (contractor's fault, not ours) as the weather kept us quite isolated for several months.  We have met only a handful of people in our little community, none of which I would call friends at this point.  We are attending a small church with nice people, but again – acquaintances not  friends.  Our kids have demanding jobs with long hours – son works for Microsoft and d-i-l is an attorney – plus they have a 3 year old daughter and a 5 month old son, so already have all they can do without having to help with me!    My husband is not particularly medically savvy or caregiver inclined. 

 

As daunting as it would be – if I’m right about my condition – wondering if we would be better off trying to move back to Mississippi where we have friends we could call /depend on for help or,  in everyone’s experience (realizing no two are the same), is this something we can do pretty much by ourselves right where we are?  Any comments, opinions, info very much appreciated.   

ShadyGuy

Guessing

don't guess at your diagnosis. Instead go to an oncologist. To me it seems unwise to make life changing decisions based on sketchy info and guessing. I lived just next door to ND in MN for a very long time. I can tell you definitively that you will not find better care anywhere. Good luck.

menoozie

Oh for sure going to the

Oh for sure going to the doctor. Will have to start with a walkin clinic as we haven't needed a dr up here so far. And I more wanted some idea from people's experience as to whether we might need more help/a better support group than we currently have. We live in a community of only just over 100 people and know literally no one here we could call on for help other than our son and daughter-in-law and as I said, they have very busy lives that I don't want to burden with my care. Thank you for your thoughts. 

PBL

Carts and Horses

Hello Menoozie,

A lymphoma diagnosis is a precise (and often lengthy) process necessarily requiring a biopsy. There are many different types, each with their own specific treatments. Treatment options also depend on a variety of factors, such as the patient's age/condition, other medical issues, symptoms, affected site/organs, etc. They range from "watch and wait" to radiotherapy, combination chemotherapy, and all the way to allogeneic transplant.

Therefore, as Shady Guy above has already replied to you, there is no point in diagnosing yourself. Symptoms of lymphoma can also be symptoms of something totally different, that an MD has been trained to detect, and that  we mere mortals may not even be aware of. If you are experiencing symptoms of "something", get thee to a doctor's and let him/her start the diagnostic process. Then, by all means, if indeed you have guessed correctly, come back with your definite diagnosis and treatment plan and I am sure you will find many people here to answer your questions.

As regards the need to be surrounded by a cohort of helpers, no need to worry. You and your somewhat reluctant (if I read you correctly) husband will probably be able to manage on your own - you might consider paying someone for a few weekly hours of housecleaning work IF you ever have to undergo chemotherapy and IF it makes you feel too ill. Perhaps - but there again, that depends on treatment - if neither you nor your husband can drive, you may need assistance getting to and from hospital.

Just to give you an idea, last year I had six rounds of a chemotherapy regimen which is generally considered to be towards the harsh end of the spectrum. It did not stop me from going out most days and taking care of my own shopping and cooking. I have since resumed work.

Hope this answers your current preoccupations.

Do let us know what a professional MD finds!

PBL

Rocquie

menoozie

I will answer your questions as they applied to me, without further comment.

1.  I started treatment about 2 weeks after diagnosis.

2.  I had a surgical lymph node excision which led to my diagnosis. I started treatment about 2 weeks later.

3.  I had chemo (R-CHOP) every 3 weeks for 8 treatments. I then had Rituxan maintenance for 2 years. 

4.  I don't speak very often about what I went through during my treatment for a number of reasons. I don't want to discourage anyone, especially one who has not been diagnosed. I will say I am glad I did it and would do it again.

My husband and I made it just fine through my treatment on our own.

Best wishes,

Rocquie

 

Sandy Ray

First knowing which of the many kinds of Lymphoma you have makes a huge difference in treatment etc. I like others on this forum can only give you their experience and even on the same treatment that is different. Every person responds differently. Some have very view side effects and some have many. So I will answer your questions but do not want you to have a false sense of security that now you have all your information to make a decision.

I first went to Dr 2/5/2017. Diagnosis was around 2/24/2017 of the specific type of Lymphoma.

I had 2 very rare types one Hodgkins and one Non Hodgkins. One was indolent and one was aggresive.

Started treatments on 3/21/2017 after getting 2 more opinions from Oncologist for course of treatment.

Treatment 1-3 were ok still got out except on A few bad days. Treatment 4 and 5 I have been more fatigued but still up and about. I have slept very late for long periods of time maybe 4 or 5 days of the 15 weeks of treatment thus far. Helps to have someone who can pamper you on bad days but I can do it if push comes to shove.

I have been on RCHOP. I have hopefully 1 treatment left. 

Remember everyone is different and what kind of treatment you get makes a big difference. I am also 53 which I am told by all my Dr's is young . 

Sandy Ray

po18guy

Google is a mortician, not a doctor

The World Health Organization lists 68,069 known human diseases and conditions. Of those, only about 125 are cancers. Our bodies are capable of producing about 150 different symptoms. By simple math, that is 450+ potential diseases per symptom. Two symptoms, 900+ possible diseases, and so on. So, multiple symptoms can point to thousands of different diseases, with only 125 being cancers. So, chances are very slight that it is a malignancy. Particularly if you suspect lymphoma, as lymph nodes routinely enlarge as they react to the polluted air, water and food we take in. If they did not, we would quickly succumb to common infection - our greatest enemy.

menoozie

Thank you all for your

Thank you all for your information and "chastisement". I realize that a list of symptoms do not equate to cancer and just wanted some insight in case they do. I am almost 69 and had (have) what seemed unrelated issues/symptoms until three new ones occurred. While researching one (nodes on right side of neck), when lymphoma came up, it was like a checklist for what's been going on with me for the past six to nine months or so.  I intend to see a doctor next week (wanted to give nodes opportunity to possibly go away if just inflammation) and go from there. Sorry if in your minds I'm being silly but thought "they've been there - they'll understand". Apparently not but blessings to all. 

Sandy Ray

Chastisement

Please do not feel like you are being beat up. We are all really here to help. There is probably not a one of us who have run down a road out of worry and found nothing at the end. Most everyone here speaks from personal experience. Your questions and concerns are very valid. You are just running way ahead and need to get some answers so you know where you are headed. It is human nature to start thinking the worst and wanting to figure it out. However with Lymphoma it is almost always a must to wait for the Dr to give results. Even during my diagnosis the test were sending us all directions until we got the only thing that really matters. That is the final pathology report from a biopsy.  Even the needle biopsy looked much worse because it did not have enough info.

I hope you get a diagnosis soon and if it it Lymphoma come back and rest assured there are lots of caring people here ready and willing to help.

Sandy Ray

po18guy

menoozie said:

Thank you all for your

Thank you all for your information and "chastisement". I realize that a list of symptoms do not equate to cancer and just wanted some insight in case they do. I am almost 69 and had (have) what seemed unrelated issues/symptoms until three new ones occurred. While researching one (nodes on right side of neck), when lymphoma came up, it was like a checklist for what's been going on with me for the past six to nine months or so.  I intend to see a doctor next week (wanted to give nodes opportunity to possibly go away if just inflammation) and go from there. Sorry if in your minds I'm being silly but thought "they've been there - they'll understand". Apparently not but blessings to all. 

Just keep in mind...

That cancer produces symptoms, but symptoms do not produce cancer. Once we are suspicious of something sininter occurring, we tend to notice each and every ache, pain and oddity of bodily function and aggregate them, when they may be completely unrelated. You are not silly to be concerned about your health, as conditions arrive and multiply as we age. The point is that lymph nodes are not cancer detectors, but integral parts of our immune sytem. If they did not react and enlarge, we would all soon expire of massive infection - the most common enemy we have. Simply keep doctor updated on any new concerns and let the medical degree decide.  

Unknown

menoozie said:

Thank you all for your

Thank you all for your information and "chastisement". I realize that a list of symptoms do not equate to cancer and just wanted some insight in case they do. I am almost 69 and had (have) what seemed unrelated issues/symptoms until three new ones occurred. While researching one (nodes on right side of neck), when lymphoma came up, it was like a checklist for what's been going on with me for the past six to nine months or so.  I intend to see a doctor next week (wanted to give nodes opportunity to possibly go away if just inflammation) and go from there. Sorry if in your minds I'm being silly but thought "they've been there - they'll understand". Apparently not but blessings to all. 

Have you seen the doctor yet?

Have you seen the doctor yet??? I am curious to know what you have found out. I am very much like you, in that I google everything! Sometimes it has caused me unnecessary worry, but there are times it has brought me a measure of relief as well. The key is to stick to reputable sites. Regardless of whether you "google" or not, don't  wait to see your doctor! It is worth the peace of mind it gives you to know or at least to be on the path to knowing what is going on. 

That being said, you sound like you are a planner and perhaps that helps you to cope with worry. See what the doctor says...it could very well be something completely unrelated to cancer. If it is lymphoma, don't panic! They are making great strides in treatment. And regardless of what the prognosis is, don't be afraid to ask for help and take it when offered! And if your husband isn't helpful, talk to him about what you need. Do not think of yourself as a bother! We all need help and care sometimes...you are an important part of your family, and need to think of yourself as one. Now go see that doctor! (And don't even think about moving at this point!)

Unknown

Have you seen the doctor yet?

Have you seen the doctor yet??? I am curious to know what you have found out. I am very much like you, in that I google everything! Sometimes it has caused me unnecessary worry, but there are times it has brought me a measure of relief as well. The key is to stick to reputable sites. Regardless of whether you "google" or not, don't  wait to see your doctor! It is worth the peace of mind it gives you to know or at least to be on the path to knowing what is going on. 

That being said, you sound like you are a planner and perhaps that helps you to cope with worry. See what the doctor says...it could very well be something completely unrelated to cancer. If it is lymphoma, don't panic! They are making great strides in treatment. And regardless of what the prognosis is, don't be afraid to ask for help and take it when offered! And if your husband isn't helpful, talk to him about what you need. Do not think of yourself as a bother! We all need help and care sometimes...you are an important part of your family, and need to think of yourself as one. Now go see that doctor! (And don't even think about moving at this point!)

Unknown

unknown said:

Have you seen the doctor yet?

Have you seen the doctor yet??? I am curious to know what you have found out. I am very much like you, in that I google everything! Sometimes it has caused me unnecessary worry, but there are times it has brought me a measure of relief as well. The key is to stick to reputable sites. Regardless of whether you "google" or not, don't  wait to see your doctor! It is worth the peace of mind it gives you to know or at least to be on the path to knowing what is going on. 

That being said, you sound like you are a planner and perhaps that helps you to cope with worry. See what the doctor says...it could very well be something completely unrelated to cancer. If it is lymphoma, don't panic! They are making great strides in treatment. And regardless of what the prognosis is, don't be afraid to ask for help and take it when offered! And if your husband isn't helpful, talk to him about what you need. Do not think of yourself as a bother! We all need help and care sometimes...you are an important part of your family, and need to think of yourself as one. Now go see that doctor! (And don't even think about moving at this point!)

Oops...sorry for the double

Oops...sorry for the double post...new to this...

lindary

unknown said:

Have you seen the doctor yet?

Have you seen the doctor yet??? I am curious to know what you have found out. I am very much like you, in that I google everything! Sometimes it has caused me unnecessary worry, but there are times it has brought me a measure of relief as well. The key is to stick to reputable sites. Regardless of whether you "google" or not, don't  wait to see your doctor! It is worth the peace of mind it gives you to know or at least to be on the path to knowing what is going on. 

That being said, you sound like you are a planner and perhaps that helps you to cope with worry. See what the doctor says...it could very well be something completely unrelated to cancer. If it is lymphoma, don't panic! They are making great strides in treatment. And regardless of what the prognosis is, don't be afraid to ask for help and take it when offered! And if your husband isn't helpful, talk to him about what you need. Do not think of yourself as a bother! We all need help and care sometimes...you are an important part of your family, and need to think of yourself as one. Now go see that doctor! (And don't even think about moving at this point!)

Looking ahead

I work in IT and I always approach problems looking to gather all of the information I can. Then dig through it and figure out the options. Next step is to determine the pluses and minuses of each option. That is how I prepared and got through it all. 

Miracle3

Mississippi native

Just thought I would write. I'm also a Mississippi native.I don't have a lymphoma diagnosis, but I'm waiting on biopsy results.  Please don't take this the way it sounds, but you mentioned your son wanted you to move north. I know they are busy with kids, but when I was a kid (one of three), my parents worked AND took care of their own parents who had chronic illnesses. I would do the same for my parents and hope my children would too. Let us know what you find out.