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New DLBCL diagnosis for my mother, advice for a patient advocate?

MomsAdvocate

New member
My 80yo mother had a biopsy in taken in early December related to swelling in her leg, and within a few days was informed she had a Non-Hodgkins Lymphoma. An appointment was set with an oncologist for mid-January. With that much delay between diagnosis and first appointment, we took some mis-guided comfort in what we saw as an apparent lack of urgency, i.e. "Cant be that serious".

Last week was the appointment, and the more-detailed diagnosis of DLBCL, described as aggressive. A PET scan is scheduled for next week, as well as an echo-cardiogram (she has a history of cardiac issues). Than another 2 weeks before she sees the doctor again to discuss the scan results and a treatment plan.

Mom assumes that the slow cadence of test, appointment, test, appointment is just how it goes, and unlikely to push for a faster pace. We, her children and now her patient advocates, are less comfortable with the lackadaisical pace. We have a plan for one of us to be there at each of her appointments, to take notes and ask questions, but we're wrestling with how aggressively to insert our opinions about her care schedule. Mom is currently seeing her doctor 30 min from home which is convenient, but she could also be at an NCI location in Ann Arbor with a 3 hour drive - where the scan, discussion, and start of treatment would happen in a few days (we imagine, anyway).

So this is the first of many questions I expect to ask here: How significant is the length of time between first diagnosis and start of treatment, and is 10-12 weeks excessive? Are we going to find ourselves a few months down the road saying "If only we'd pushed to get her started a few weeks sooner"?

I'm happy to have found this community. Any advice is appreciated.
 

frankhond

Member
Welcome! 10-12 weeks sounds like a lot. Couldn’t you find an arrangement where she would be diagnosed and treated at the center, with checkups and the like closer to home?

In general DLBCL is treatable at all stages, so it’s not one of those cancers where you must proceed with super speed. And the pathology analysis can take up to 2 weeks to complete properly. But there is no reason to wait longer than necessary, and less disease is always better than more.

We always recommend that people go to specialist cancer centers, at least for a second opinion. And in the case of an 80 year old patient, you need extra good care.

All the best to your mom, let us know how it goes.
 

andym

Super Moderator
I'm really sorry that your family has to face this disease. The time between diagnosis and treatment can be very difficult as you adjust to the situation and deal with the shock.

A good thing with lymphomas is that they are rarely urgent but this still seems a bit slower than I would want. A hint to whether this is making a difference is just how she is feeling. Has the swelling in her leg changed? Have any other symptoms changed?

BTW, I had a different lymphoma but also had leg swelling at one point. The first treatment I had didn't work for me (it was a try at a low toxicity treatment that wouldn't be tried for DLBCL) and so I had the swelling for close to 6 months and it did not long-term damage. Things went back to normal once I got a treatment that worked.

Overall, I agree that a good reason to get a second opinion at Ann Arbor is her age and history of cardiac issues. The standard treatment for DLBCL does have some cardiac risks that need to be managed and so expert advice could help with that. And Ann Arbor is an excellent center.

I also agree that it might be possible to have the major center guide the care but get infusions and routine blood tests closer to home.

Good luck pushing things forward and please let us know how it is going.
 

MomsAdvocate

New member
Thanks for the feedback and kind words! We are working through the shock and adjusting to the new reality.

Mom's schedule difficulties are in large part due to her location in rural N. Michigan - her doctor travels a circuit and is only in her area one day a week. When the PET scan didn't line up well, it threw almost a full week delay into the schedule. But luckily, her swelling is pretty much unchanged - so at least she's not feeling any worse.

We are going to try to get her into the NCI center in Ann Arbor for a second opinion, and hopefully that'll happen before her treatment begins. We won't delay the treatment any further, in any case.
 

zac495

Moderator
Welcome to our friendly forum. So sorry you need to join us, but you'll find us a friendly bunch. I'm so glad your mom has such a great advocate.

I concur with others. This cancer isn't as urgent as others, but that's a long wait. I would really like to see you get her to a big cancer hospital that specializes in lymphoma. Can you take a week and go there and stay in a hotel if necessary? I wouldn't want to wait that long- but neither should you panic.

Please let us know what you decide moving forward. All my love to your dear mother.
HUGS
Ellen
 

MomsAdvocate

New member
Thanks everyone for the feedback and good thoughts. We did get Mom in to the Rogel center in Ann Arbor for a consultation, and their recommendation is aligned with her local hematologist's.

Her PET scan showed multiple involved lymph nodes in back & neck, stage 3 DLBCL. She starts treatment with R(mini)CHOP next Mon, which has 1/2 dosage rate of C,H,O components and 80% of P - due to her age and frailty. If she tolerates it well they will titrate up to full strength by the end of her 6 rounds.
 

earthling

New member
It's encouraging you got the original therapy confirmed at an acknowledged cancer center. Also, their plan about titration sounds good - seems like you are in fine hands overall :)

Wish you the best of luck with the treatment and beating this thing as so many people had beaten it!
 

andym

Super Moderator
Getting the treatment plan confirmed is excellent. Now you can move forward with full confidence that she is getting the best treatment and focus on helping her through the process.

My way of looking at R-CHOP is that the first week, especially with the prednisone, is spent keeping bodily functions moving along. Take the anti-nausea meds without waiting for full nausea to set in. It is far easier to prevent it or stop it early than stop it once it has really hit. Ask about stool softeners or laxatives because the vincristine can stop you up. And take the prednisone in the morning to give a good chance of getting some sleep. And don't hesitate to take a sleep aid. She will be taking a lot of drugs that can make her better but that can have some nasty side effects. So also take the drugs that make the process easier.

For the first Rituxan infusion the main key is to tell the nurses the moment she feels anything odd (tingling, itching, cold, hot, shakes). They can deal with the infusion reactions by stopping or slowing the infusion and adding other drugs. But once again, it all works better the sooner they can intervene. For most people it goes in like saline. For the rest of us they can help us get through the infusion.

Good luck next week!
 

MomsAdvocate

New member
Encouraging progress

Just a quick update on Mom's progress. She had 2 mini (50%) R-CHOP treatments and tolerated them really well. Minimal to no nausea, minimal to no pain, just general fatigue and some "chemo-brain" confusion. She was already having some minor memory/cognitive issues before this, and the increased mental fog seems to be the most distressing thing for her - though she's comforted that this is probably temporary. She just had her 3rd R-CHOP at I believe a 75% dose, and that's also going well according to Dad. So far, so good.

As for progress, that's going well too. Her first followup PET scan last week found almost no trace of the smaller nodes in her neck and back, and significant reduction of the main sites in her groin. The swelling of her leg that was the initial sign and biggest discomfort for months has completely resolved.

Overall, I feel like she's doing as well as we could have hoped for. Thanks again to the members of this forum for the advice and encouragement!
 

andym

Super Moderator
That’s great that she is getting so much benefit from the treatment.

Cognitive issues are really frustrating. Hopefully she will see some improvement as she recovers and that will give her hope for even more improvement over time.
 
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