It’s back

Anaid2160
Anaid2160 Member Posts: 20
in Lymphoma (Hodgkin and Non-Hodgkin) #1

Hi,

In July 2017 I was diagnosed with aggressive large B cell stage 2 lymphoma. I had 6 rounds of R Chop. I had been NED since December 2017. I was treated by an oncologist. I was told I could have the port removed.

Fast forward to October this year. I had been running a low grade fever every night. In November the temp is over 100 every night, mouth sores, night sweats, pain in stomach pain. October 31 normal CT. November 19 normal CT. Back in Emergency room on December 3 a mass is now seen around stomach. They did an exploration surgery. And a biopsy was done. Waiting on results which are taken longer because COVID. The doctors are now convinced lymphoma. I am having PET on Thursday and see my oncologist.

I have lurked on this site long enough to know it's not cancer until biopsy come back positive.

With COVID my spouse is not allowed to the appointment with me. I think I should have a hematologist. Under stress I'm easily confused.

thank you for reading and any advice for this terrified nana

 

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Comments

  • PBL
    PBL Member Posts: 366 Member
    edited December 2020 #2
    The wait...

    Hi,

    The wait is always a difficult time. I am sorry you have to go through it again. Fortunately, if I read you correctly, it's only a couple of days until you see the oncologist - and I assume it will be not just with the PET results, but with the biopsy results as well - so you will not remain in limbo for too long.

    Now, as to the notion of "is my oncologist sufficient for this?" (although a relapse is not necessarily your doctor's fault), it cannot hurt to get a second opinion, especially when things are no longer as straightforward as they seemed. A relapse (if it does turn out to be one) definitely justifies seeking the competences of the most qualified in the field. If you are in the United States and are not already being treated/followed up at one such facility, you may want to ask for an appointment with a hematologist at one of the National Cancer Institute Designated Cancer Centers or at least at a teaching hospital [https://www.cancer.gov/research/infrastructure/cancer-centers].

    Regarding your understandable need to have emotional support (plus a second pair of eyes and ears) at that upcoming appointment, have you considered having your spouse "virtually" present through some form of videoconference?  

  • Anaid2160
    Anaid2160 Member Posts: 20
    edited December 2020 #3
    PBL

    PBL

    Thank you for your reply. I plan on putting husband on speakerphone when Dr comes in. It seemed to work well while I was inpatient last weekend. I'm hoping the result from biopsy on Thursday.

    I realize that none of the steps will be rushed. I just want to know options and get belly pain under control.

  • PBL
    PBL Member Posts: 366 Member
    edited December 2020 #4
    Hang in there

    Do let us know how it goes Thursday.

  • Anaid2160
    Anaid2160 Member Posts: 20
    #5
    I will. It's going to be a

    I will. It's going to be a long day. I pretend that I'm calm. Inside I'm terrified. I want to do whatever will give me the best outcome.

  • ShadyGuy
    ShadyGuy Member Posts: 922 Member
    edited December 2020 #6
    Anaid2160 said:

    I will. It's going to be a

    I will. It's going to be a long day. I pretend that I'm calm. Inside I'm terrified. I want to do whatever will give me the best outcome.

    Its OK ..

    to be scared. In fact I would worry about anyone who was unconcerned about such a situation as the one you face. Courage and bravery are the overcoming of fear. A person who is never scared cannot be brave. Fear is normal. Don't let anyone tell you otherwise. Continue being brave. All my best wishes and I will be thinking of you.

  • PBL
    PBL Member Posts: 366 Member
    edited December 2020 #7
    Breathe!

    ShadyGuy has put it better than I could have. You've been through R-CHOP - who would face a potential relapse without any degree of apprehension?

    Just try to keep your breathing in and out slow and even - it physiologically helps with the manifestations of anxiety. Remember that fear will not change anything to what the doctor says  tomorrow...

  • Anaid2160
    Anaid2160 Member Posts: 20
    edited December 2020 #8
    I had typed a reply on

    I had typed a reply on Thursday.

    I had a pet scan Thursday. I had Dr appointment at 4:15. I think doctor made a slot for me.

    Most people were gone for the day. I was brought into exam room.

    The diagnosis is DLBCL stage iv i don't know if double or triple hit.

    Dr came in concerned. He said the lymphoma has grown against mesintary wall. He's concerned that as the lymphoma shrinks I might have a hole in bowel. 2 treatment options were given.

    The 1st option is R-gdp is outpatient. The con to this one is if something goes wrong I wouldn't have meducal help.

    2nd option R-ICE. Done in hospital.

    We are doing R-ice. I go in on Monday. I will be inpatient for 5-7 days. 
    I will be going to Rochester eventually to discuss either a stem cell transplant or CAR-T. Thank you for reading.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #9
    Treatment

    Anaid,

    There is relief for most people in making a decision and getting to work with treatment.  IF you have intestinal penetration, most likely surgery is in the future for you, or at least radiotherapy.   I hope and pray you good progress for what will likely be another tough fight.   Please continue to share,

  • Anaid2160
    Anaid2160 Member Posts: 20
    edited December 2020 #10
    Thank you. I'm trying to

    Thank you. I'm trying to figure out the schedule. I have been to see Dr Google.

    I can't find the answer. I know that I will be inpatient for 5-7 day. How long is the wait between treatment?

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #11
    Anaid2160 said:

    Thank you. I'm trying to

    Thank you. I'm trying to figure out the schedule. I have been to see Dr Google.

    I can't find the answer. I know that I will be inpatient for 5-7 day. How long is the wait between treatment?

    R-ICE

    https://chemocare.com/chemotherapy/acronyms/rice.aspx

    Above is some data on R-ICE, which of course is "ICE", with Rituxan added.    Only your doctor can tell you what your schedule will be.

  • Anaid2160
    Anaid2160 Member Posts: 20
    edited December 2020 #12
    Max 

    Max 

    This time the is so much different then 2017. The 1st time the dr was 100% positive I would beat it.

    When I went on Friday he told me that this time there is a high mortality. He wants to know if I want to be Revived if I code. I am 60 years and have grandkids I need to see grow up.

    I go into hospital tomorrow for 1st round of chemo.

  • PBL
    PBL Member Posts: 366 Member
    edited December 2020 #13
    Keep faith

    Anaid,

    It makes sense for your doctor to treat you as an adult and discuss that possibility - do not let it depress you. Your medical team will be aware of the risk level and will do their best to help you through this. 

    One of the regular posters here, if I remember correctly, did have a perforated/torn bowel as a result of her tumor shrinking in response to chemo. She is doing well now, as far as I know, and still posts occasionally.

    I will be thinking of you. Do keep us posted on how things go.

    PBL

  • Anaid2160
    Anaid2160 Member Posts: 20
    #14
    Today is my third day

    Today is my third day inpatient. Today I was able to have a shower. It felt wonderful. They are running a 24 hour drug. Epst something. They tell me as they hang them. I don't seem to comprehend. I might be released by Friday.

    Waiting to see other doctor who will do the stem cell or car-t

  • PBL
    PBL Member Posts: 366 Member
    edited December 2020 #15
    Etoposide, maybe?

    Hi Anaid,

    Glad to read your news!

    Based on this description:

    [https://www.macmillan.org.uk/cancer-information-and-support/treatments-and-drugs/r-ice]

    you may have been getting Etoposide, which closes the round of drugs.

    Congratulations on completing that first round! I hope you are safely dispatched home and able to rest comfortably until round 2.

     Do keep us posted on your progress.

    Kind regards,

    PBL

  • Scubamom for two
    Scubamom for two Member Posts: 27 Member
    edited December 2020 #16
    Greetings Anaid,

    Greetings Anaid,

    Stay strong!  Your first post on this thread regarding the initial diagnosis sounded similar to mine in that I also was diagnosed with a very aggressive/High Grade DLBCL in July of 2017, but I completed my treatments in late January of 2018 because I had to have 6 rounds of DA-R-EPOCH and then 2 consolidation rounds of High Dose Methotrexate and I also had a one week delay after round two due to getting a PICC-line infection.  I was moved by by your post.   I also have beaustiful grandchildren to see grow up and that helped motivate me to get through the grueling treatments and to the other side.  I haven't been on here much because I have been doing pretty well and feeling much more like my pre-cancer diagnosis self.  I jumped on today because it was exactly three years ago today that I was in-patient getting my 6th round of combo chemo and my first and only (I hope) blood transfusion on my 54th birthday!  Anyway, it sounds like you have a great team as you face this battle.  PBL always has great advice and support!  I am sending so many positive thoughts and good energy your way right now and I am pulling for you to get to Remission!  Stay Strong and win thi sbattle and then the war!

    Sincerely,

    Diane

  • Anaid2160
    Anaid2160 Member Posts: 20
    edited December 2020 #17
    Scuba mom,

    Scuba mom,

    Congraulations on 5 years. With covid this year I stopped following this thread,

    I'm at clinic today getting IV hydration. My BP is 70/52. Last night my legs gave out on way to Bathroom. I had to crawl into bathroom. It was difficult getting back up on my feet. Hopefully rest of week is better. I have appointment with nurse practitioner on Wednesday. I should be getting a call from Dr doing next step on Tuesday. 
    I'm praying they let my husband come in for transplant discussions 

  • Rocquie
    Rocquie Member Posts: 869 Member
    edited December 2020 #18
    Anaid

    I recently had a medical appointment where we were instructed to call to when we got there. We then waited in the car, rather than the waiting room until they were ready for us. They called when we were to go inside. There was a woman at the door who checked for masks, asked questions, and took termperatures. She told my husband to wait for me in the car. I quickly told her I needed him to go in with me and why. After she grudingly let him in, no one else seemed to give it a second thought. Keep in mind that no medical office is going to have key personnel minding the door. She was most likely a clerical employee or a medical assistant.  Tell the "gatekeeper" you need your husband because you get easily confused (as you stated above). If that doesn't fly,  ask to speak to the triage nurse. 

    I wish you the best. . .

    Rocquie

     

  • TCfuss
    TCfuss Member Posts: 1
    edited December 2020 #19
    late effects of chemo

    I finished 6 rounds of chemo back in march of2020, so far all scans have come back clean. But, I am having serious issues with my memory, very forgetful, can't seem to remember hardly anything short term. Has anyone else experienced similar issues?

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    edited December 2020 #20
    Rocquie said:

    Anaid

    I recently had a medical appointment where we were instructed to call to when we got there. We then waited in the car, rather than the waiting room until they were ready for us. They called when we were to go inside. There was a woman at the door who checked for masks, asked questions, and took termperatures. She told my husband to wait for me in the car. I quickly told her I needed him to go in with me and why. After she grudingly let him in, no one else seemed to give it a second thought. Keep in mind that no medical office is going to have key personnel minding the door. She was most likely a clerical employee or a medical assistant.  Tell the "gatekeeper" you need your husband because you get easily confused (as you stated above). If that doesn't fly,  ask to speak to the triage nurse. 

    I wish you the best. . .

    Rocquie

     

    Excellent

    These are superb insights, Roc.    I have learned for certain at work that covid "Temp Takers" are always the most junior personnel 

  • Anaid2160
    Anaid2160 Member Posts: 20
    #21
    Thanks for the advice. I will

    Thanks for the advice. I will inist that he be with me for stem cell or car-t. It's too important of a decision for me to make filled with poison. Went in for another IV hydration. I had to use a wheelchair to get to infusion. With this hydration I actually felt human and was able to walk out to the car like a big girl. They decided to do hydration on Tuesday and Wednesday. I didn't realize this is a 14 day cycle. The thought of going into hospital on Monday. I have mouth sores. I'm rinsing with salt water or baking soda. I have magic mouth wash if I have to use it.

    Thank you for giving me a place to ramble who understand what I'm talking about.

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