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I'm a newbie and have some questions

Vincevette78
Posts: 2
Joined: May 2016

Things have moved very fast in the last 5 weeks. Had a lump in my groin and thought it was a hernia. Turned out to be Non-Hodgkin lymphoma. The one thing that has helped me out the most was something I read. It said look in the mirror and say I have cancer. Well it did help me,, 

I've been reading all the different post on here and I'm so thankful for everyone's post.  I have a positive attitude for now at least. We'll see when I start the chemo. Still have 1 more test on the 95th and my follow up on the 13th. That's when they I get the results from the bone marrow biopsy. 

 One question, ok that's not true I have thousands of question. The one I have is about the port. At what point do they remove it?

 

 Thank everyone for being so informitive. God bless y'all 

Sten's picture
Sten
Posts: 162
Joined: Apr 2013

Hi Vincevette78,

It is good to have a positive attitude. It helps.

Ports are there because they are practical. They are removed when no longer needed, which can vary a lot. You can ask the doctors about what they think in your case.

You are welcome to put your questions here. I and others will try to answer them all.

Lymphoma can be cured. I had highly malignant primary central nervous system lymphoma (PCNSL) in 2012, and I am now NED (no evidence of disease) since more than three years.

I wish you good luck!

Best regards,

Sten

Sal0101's picture
Sal0101
Posts: 136
Joined: Sep 2015

vincevette78,

I finished R-chop plus methotrexate treatments in January.  I am thinking about having my port removed after my next scan in June, but quite frankly it's not bothersome, easy to access, and I don't have to worry about the veins in my arms.  I am grateful I had it through my treatment.  I'm NED for now, but if my lymphoma returns I would not hesitate to have another port put in if I do indeed decide to have it removed. 

Good luck with your treatment!  Stay strong! We are here! 

Max Former Hodg...
Posts: 3701
Joined: May 2012

Vince,

Port removal varies a lot based upon several factors, but mostly is a judgement calll from your doctor. If he or she feels y9ou are very unlikely for near-tem relapse he will order it removed quickly. Otherwise, it could ber left in indefinitely.

My next-door neighbor and I had lympohoma at about the same time. Mine was an indolent HL, his an aggressive NHL. Our doctors were next door to one another in the same office.  My doc had my port removed immediately after my post-treatment PET scan. My neighbor's doctor left his in for well over a year.  So, it varies a lot, but mostly is the doctor's judgement.

I never much minded a port, and would have not minded if it had been left in for a while.

Have you been told what form of lymphoma you have, and what drugs will be used ?

max

lindary's picture
lindary
Posts: 711
Joined: Mar 2015

I was diagnosed with follicular NHL Dec 2012 and had my first R-Chop in Jan, no port. Port was put in before the second treatment. I was declared in remission Nov 2015 and the Dr wants to do a stem cell transplant to keep it that way but there have been complications preventing us from going forward. In the meantime I am getting rituxan treatments every 8 weeks, using the port. Indications are that I may have it until sometime in 2017 or 2018. I love the port. Veins in my left arm did not hold up long so I only have my right arm which is used when I have the Pet/CT scans. So the port is a welcome part of me. 

po18guy's picture
po18guy
Posts: 1223
Joined: Nov 2011

I had my Power Port for almost eight years. Of course, except for one six-month break, I was in constant treatment for those eight years. They took the port out last month to replace it with a more modern Smart (Vortex) Port, but it looks as though I will not be using it for awhile. I wanted mine left in, just in case.  

pdkoul
Posts: 3
Joined: May 2016

My NHL story began almost exactly like yours. Long story short I am in remission for 8 years with minimal side affects working and living like I never had it.

No one is more important than you rite now, take advantage of any assistance, trust your doctor trust your nurses more trust your gut the most. You will get thru this and come out stronger.

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