jhale17

Lee, thank you for sharing Jim with us. I'm so very sorry for your loss. May you be surrounded by the kind thoughts of all the people whose lives he touched.

Oh dear Lee, I am so sorry.

Just checking in to see how you're doing Brother Hale. How goes everything?

Just wanted to thank you for the advice! I called on a friend today, had my first real meltdown since it all started. She came, held me while I cried, and put me in the car and took me to the lake. I had to get past my pride, and reach out. It helped so much. I am married, but my husband is in total denial that I have a serious, life changing illness. He has had to take me to emergency room a few times, but has yet to see me off for a chemo treatment, or come to a dr. appt. with me. I hear him tell people that I am doing so good, and he thinks its gone. Poor guy. Again, thanks for being there...

What an incredible journey..Congrats and great post..I was diagnosed with DLBCL last summer. ..Had 6 sessions of R-CHOP. I had lymphoma in medistinal area ( behind sternum)and under am pits..and mets in pelvis..Now in remission...Last chemo was Nov 20 2015. Anything you can give me in advice is great..I read your post about patience and breathing and all that..Super!! I eat so so well. I sleep so well, i have a few aches and pains from chemo still but they say this is the norm and can last way way after chemo is finished..My scan results said Excellent response to treatment, which was LOVELY to read..I have had 2 PET/ CT scans and both fine..My bones are "remodelling" they say so that shows up as a low grade uptake on scans..My oncologist says for me not to worry but that it can return......Now only 7 months from last chemo..So far --so good..LOL Bye for now..Mimmi

I would love to hear more about your DLBCNHL diagnosis and treatment. I was diagnosed in Jan 2011 with DLBC, had 3 rounds CHOP-R, and was in remission until July 2014....figured I had won, but nope :-(. Came back in July 2014 as Follicular NHL, did several rounds of Rituxan, PET CT showed no signs of cancer as recently as Sep 2015 but in less than a month, October, it was back (neck prior, groin this time). This time surgical biopsy done showing return of DLBC again. Localized to right groin. Doc (well respected - Georgetown Univ Hosp, Wash DC) suggested do Treanda/Ritux (just completed my first of 6 rounds) with option of Stem Cell Transplant to follow. Since I have some time to make up my mind about that (according to SCT doc) they are going to go ahead and harvest my stem cells after my next round (versus after 6 rounds, making them more viable) and freeze/store them to use if I decide to proceed with SCT at some point. I feel I am getting mixed signals from oncologist and stem cell doc. Have you used the BR regimen more than once? Have you considered SCT? Would appreciate hearing more about your experience. Thank you so much.

I asked, "What happened to medicine, where it takes a year to make an eFFing nose? Back in the 1550s they made a nose in 6 weeks, and they didn't even have antibiotics-except for vodka. Why should I be impressed with medicine in the 21st century, when it takes a year to make a stupid nose? Why should I trust you, if you are so backward? My grandson was thinking about this, and he said, "You keep saying surgery, but do you really mean multiple surgeries?" "Ah, yes,. many surgeries."

What I would have liked was for somebody not paid by the hospital, nor a relative and close to me, to go in with me for my first visit. Everyone said, "But you have the nurse navigator to advocate for you." I told them that I didn't pay the NN, She would advocate for the doctor to keep her job, and that's exactly what happened. She was as useless as a hind tit on a boar hog

jhale - I really like your advice. You have a practical proactive approach that I prefer. I wish I saw you more often in my WhatNext feed. Do you have a blog? Or a Facebook presence? I would love to read one of your longer informative posts once a week. And if you are up to it, little nuggets of wisdom sprinkled throughout the week.

Amy

Thank you for your comments. Always been super mom despite what been going through always push through. Today just can't as feeling the effects more today for some reason. Thanks also for your advice.

Great news about the workshop! It's funny how quickly we become de-conditioned and how slowly it seems for the strength comes back. Listen to your body and don't push yourself too much(I'm sure you already knew this, hahaha). I used to work in physical therapy before becoming an RN....have you tried aquatic therapy? Very good for strengthening even if you just walk from one side of the pool to the other,shallow end of course. Just a thought for you.
Have a great weekend!

Thanks much, JHale17, for your response to my question about sleeping problems. My treatment is going the same way as yours except that I had the Benedryl and the corticosteroid as pills. I am feeling a lot better even though I only had about 3 hours of sleep last night. Best wishes to you on your journey!

Thank you for your response! I hope you have a great weekend!
Muriel

Love the music posted on the Pinboard....
Check out
http://www.youtube.com/watch?v=TmmKsT-f2XU

I had a few things to do this morning but once I started reading your wall Jhale it was like a bestseller that you just could not put down. Your experiences and your advice are so moving and heart felt. Thank you for posting and keeping an positive outlook on this journey we have all found ourselves in. Your an inspiration to so many of us.

Best laugh of the week. Thank you. Did you pee on anyone after three days had passed?

Hello jhale17,

You my friend are a very strong inspiration to me. I was lucky to find your post today (directed by Greg's post) on a day when I was suffering from the worst syndrome of all. I call it PLOM syndrome (Poor Little Old Me Syndrome). Thanks for your courage and inspiring message!

My best to you & yours,
vet613

jhale17,
The DLBCL returned about every 3 years in your experience. Is this the typical timing for a relapse? Have you learned your DLBCL subtype, such as GBC, ABC, or Primary mediastinal?
My subtype is GBC and my oncologist says it tends to relapse late.

jhale17,
Thank you for being you. I am filled with hope each time I read your DLBCL journey, and your experience with your wife. You have been through the mill and still have such a positive outlook and great perspective on life. Thank you for being here.

Well said...beautiful and heartfelt...I am so sorry for the loss of your wife...carry on warrior, for that is what you are. God bless!

This is my first time on this website after a very bad week. You have given ME hope and I will pass it on.

Thank you for sharing your story of Hope. My husband and I are also a "cancer couple". My condolences to you for the loss of your wife. It sounds like you both were fortunate to have one another. My husband has been fighting prostate cancer for 14 years, and it has come back for the third time. You are one up on him! I have been in remission from DLBCL for almost two years, and am feeling great!! During my R-CHOP, my hubby was there for me every minute! Now it is my turn to help him kick this monster in the teeth for he third time. You are indeed a great warrior, and reading your story gives me hope!! God bless you!

Hi Jhale17! I would like to ask a question.Did you had Lumbar puncture In your treatments? And wht are your experience about that if you take this treatment? thank you Margarita.

Thank you for your thoughts. It must be tough to have had to go through this 4 times.

I love mediation - I just ordered the CD and will uploaded to my guided mediation play list on iTunes. Thanks for the heads up.

Happy Birthday to you!! What a special birthday it is, too! I also am in remission from DLBCNHL. I also consider myself lucky to be in remission after six treatments of R-CHOP. Your story is very inspiring. I don't worry too much about recurrence knowing that there are treatments to knock it down again just as you have done so many times! I credit my luck to my faith though. Just couldn't get through without it!! Much love to you.

Oh, here is a funny. I was admiring your photo and looked at your arm thinking it was a band-aid from possibly blood withdrawal or a scan. Upon closer inspection, it said "Olan Mills". HAHAHAHAH.

Congratulations - you are such a fighter. My doctor told me that reoccurance after 2 years is rare. You are an exception with four reoccurances of DLBCL. Thank goodness there is a new Treanda+R chemo available. Thank you so much for joining and sharing. There are many of us out here that benefit from your experience. Thank you and God bless.

Thank you for sharing your experiences. You have been through a lot. It is encouraging to know that you achieved remission each time. I have DLBCL and am 5 months past treatment. How did you learn that the cancer reoccured? How are you doing today?