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Anaid2160
Posts: 23
Joined: Apr 2018

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

 

PBL
Posts: 327
Joined: Jul 2016

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
Posts: 23
Joined: Apr 2018

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
Posts: 327
Joined: Jul 2016

Do let us know how it goes Thursday.

Anaid2160
Posts: 23
Joined: Apr 2018

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
Posts: 702
Joined: Jan 2017

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
Posts: 327
Joined: Jul 2016

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
Posts: 23
Joined: Apr 2018

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 Hodg...
Posts: 3689
Joined: May 2012

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
Posts: 23
Joined: Apr 2018

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 Hodg...
Posts: 3689
Joined: May 2012

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
Posts: 23
Joined: Apr 2018

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
Posts: 327
Joined: Jul 2016

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

lindary's picture
lindary
Posts: 710
Joined: Mar 2015

Yep. That was me!  Short history. Disgnosed with Follicular non-hodgkins lymphoma just before Christmas of 2014. Had my first chemo (Chop) early january. Rituxan was waiting for approval. My treatments were on Tues. The Wed before my second treatment I went to bed as normal and woke up a few hours later with horrible abdominal pains. Had my husband call 911 because I couldn't stand. At the hospital they determine that the enlarged lymph node that was resting against the bowels has shrunk. In doing so it tore a hole in the bowel. When they did the surgery to fix the bowel they also put in my port. As it turned out I was ready to start treatments as of what would have been the 3rd treatment. Of course this time the Rituxan was part of it. 

Over time I have learned to watch how much I eat, especially fiber. The site of the bowel repair has scar tissue. This tissue does not expand like normal bowel tissue does. I have ended up back in the hospital twice with pains because of a blockage. So I watch how much I eat, espcially the fiber. I drink water with ALL meals. I still have time I eat too much and my gut feel uncomfortable. So I tell my husband I am on a liquid diet for the next 24 hours. Water, juice, tea, chicken broth. Then slowly add back solids, sometimes using a laxative.  Not fun  but it does liven up the day. (I do have a weird sense of humor at times.)  

 

Anaid2160
Posts: 23
Joined: Apr 2018

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
Posts: 327
Joined: Jul 2016

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's picture
Scubamom for two
Posts: 27
Joined: Apr 2018

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
Posts: 23
Joined: Apr 2018

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's picture
Rocquie
Posts: 857
Joined: Mar 2013

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

 

Max Former Hodg...
Posts: 3689
Joined: May 2012

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

TCfuss
Posts: 1
Joined: Dec 2020

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?

John W.
Posts: 2
Joined: Dec 2020

Hi TCfuss,

I am in a similar situation as you. I finished 4 rounds of r-chop plus 2 rounds of rituxin at the end of April 2020. Plenty of instances where I forget things such as what did I do just 5 minutes ago or what is my cousin‘s name again? Also, yesterday was a bad day with fati for me. I was on a pretty good run of 4 goods in a row and then yesterday’s fatigue hit me hard. Feel a little better today, but struggling again. I’m thankful to be in remissio. Now working on adjusting to the recovery proces.

Anaid2160
Posts: 23
Joined: Apr 2018

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.

Anaid2160
Posts: 23
Joined: Apr 2018

Hi,

I went for hydration therapy on Tuesday. Made arrangements to have zoom meeting with other dr.

They did labs off of my port. Said my counts were low. They drew labs from other arm. Got results back. I need to go for blood transfusion. It's scheduled for 8  pm. Got transfusion thru port. Done at 11. Went home straight to bed.

Had appointment on Wednesday to get hydration and see PA.

Woke up on Wednesday with temperature. Called clinic. had labs. White blood counts have bottomed out.

Do you want to go by car or Ambulance. If you go by car you could wait in waiting room awhile.

I now have not much of an immune system. I guess I will do ambulance. They take me right back to a bed.

At 8 pm. Finally in room in oncology. They can't access my port. Vascular comes in. She accessed but no blood return. Good news is fever broke last night.

Hoping to be home tomorrow.

PBL
Posts: 327
Joined: Jul 2016

Hi,

The clogged port is a bummer! It may not have been rinsed quite thoroughly after the late-night transfusion... Maybe saving it for chemo only would help prevent that.

The low blood counts, I guess, are more or less to be expected as bumps in the road go.

Hang on to the idea that you're going through this with the prospect of future, happier Christmases, birthdays, graduations and other celebrations in mind. It may not seem helpful just now, but the future can only be accessed through the present - just as giving birth was the price to pay to have your children.

Sending sympathy and resolution your way.

PBL

Anaid2160
Posts: 23
Joined: Apr 2018

Hi, I have been the hospital since 12/23. I'm scheduled to see in infection Specialist today. My mouth is covered in sores. My white blood count is up to 15000. The platelets and red blood cells need to turn up, the blood Infection is supposed to be from my intestines or my port. They think the mouth sores could be viral. No discharge date. I have a very maybe for Thursday 

PBL
Posts: 327
Joined: Jul 2016

Very sorry you have to go through all this. I do hope the infection is eradicated soon and that you can get back on course without any further hiccups.

Has your husband been able to accompany you and offer support?

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