Stage IV follicular lymphoma. Eek!!!

[riderinthestorm]

I never knew there was a cancer support group here at DU and wow!! I am in shock at reading the posts here. I just never knew.

My husband has been diagnosed with follicular lymphoma. The mass in his abdomen is 14 cm, the nodes in his neck are 4 cm and 3 cm each. The mass on his thyroid is 2 cm with two lesions on his liver as well. We never knew this was coming as he has never had a single symptom. We went to the ER cause he had severe abdominal pain which we thought was appendicitis but it turns out it was the abdominal tumor wrapping itself around the ureter and backing up the kidney.

I am terrified! For him, for me. He's already had the tumor and bone marrow biopsies (shockingly enough it's NOT in the bone marrow!!! yay!), CT scans, bloodwork and a bunch of other ultrasounds to rule out other types of cancer. They've put in a stent to relieve the pain and pressure on the ureter and to allow the kidney to drain.

I would definitely love some feedback at this stage though - we need to nail down a treatment plan and I just don't have enough experience on the logistics of this thing to figure out what to do.

Scenario A: Use the local oncology center and the standard 6 sessions of R-CHOP chemo. If he relapses this oncology center will fall back on Bexxar. They don't do stem cell transplantation. Drawback - we weren't terribly impressed with the doctor we've been using and asked for a referral for a second opinion. This oncologist is the one who has done and/or requested all the testing so far. The positive side is that this center is very convenient to our house and has a decent reputation. The treatment for this type of lymphoma is very standard and this doctor will be following a protocol that is well established.

Scenario B: We just got back from the University of Chicago Center for Advanced Medicine - one of the best of the best oncology centers on the planet. U of C is also the only cancer center in the Chicago area who have a clinical trial going that my husband qualifies for. We LOVED this team, LOVE their plan, LOVE the clinical trial (5 sessions of R-CHOP, final session is CHOP and Bexxar). Also, if he relapses they will go straight to the stem cell transplantation. Big drawback; it took us over 90 minutes to get there and 90 minutes back home today! The trial would require him to get the treatment at U of C (he couldn't get treatment at a local center working under U of C's direction). AND there are other days when we would have to go to U of C for various other tests mandated by the clinical trial. We estimated we would have to be there probably 15 times in the next 3 months!

Does anyone have any experience driving that kind of distance that often for treatment? Does anyone have any experience participating in a clinical trial? For his health, we would make the time to do this thing but the hassle factor looms large from my perspective. He is leaning towards doing it because it would be something he can contribute to the general knowledge base of treating this kind of cancer. He also really connected with the lead doctor heading the study - they were laughing and easy together right away. The whole U of C experience was amazing and I know how important it is for the patient to like and trust their doctor and he really liked the U of C doctors instantly in a way that he hasn't felt comfortable with any of the other surgeons, urologists and oncologists so far...I just don't know if the logistical problems pose too great of a barrier...honestly, for me.

I am struggling with trying not to be weepy every single minute. My husband is handling this so well, calm and stoic. I am a basket case. I worry that I won't be a good enough caretaker - especially if he has a rough ride. I am saying to him that I am up to doing anything, and I think I will be when it's time to dig in, but from here Chicago looks like a mountain that I don't have the energy to climb.

[LeighAnn]

1. Very shocking

While I'm terribly sorry for this shocking turn of events in your lives, I'm glad you've got your wits about you, are thinking logically, and ready to fight!

Your Scenario B sounds very promising... could you stay over in Chicago part of the time to avoid having to make the trip so often?

Praying for you and wishing your husband a speedy recovery!

[riderinthestorm]

3. Yes, we probably could stay over but it's expensive!

We just aren't in that kind of financial place to stay overnight. Wish we could though!! Great suggestion.

[wakemeupwhenitsover]

6. You might be able to look into hotels/motels & ask

if they have a discount rate for patients. I went to a family memorial service a few years ago & the hotel gave us a huge discount when we told the manager why we were there.

It might be worth a shot. Maybe not for every time, but even spending one night once in a while might lighten the load for you.

:hug: to your & yours.

[LeighAnn]

7. American Cancer Society's "Guest Room Program"

On the University of Chicago's website they've got a list of Downtown hotels, and below that it says,

"The American Cancer Society (ACS) offers additional reduced rates at various downtown and suburban hotels to cancer patients. For more information on the ACS's 'Guest Room Program' please contact Mary Herbert or Patricia Parker at [phone] or visit the Cancer Resource Center ( http://www.uchospitals.edu/specialties/cancer/crc/ )"

Here's another place that might be able to help

http://www.cancercare.org/get_help/assistance/cc_financial.php

and if you start a fund, let me know!!!

[seemunkee]

2. Not familiar with that type of cancer

But I will say that having confidence with the doctor can make a big difference. When my mother first got breast cancer she started with a doc that she didn't care for. She had no confidence that she would last very long. After switching to a very understanding and knowledgeable doc she felt better about her treatment and had a positive outlook. She made it through 15 years of recurrences. Clinical trials show that people who go to support groups have longer survival rates than those who do not. Positive attitude counts.

Read the info on the clinical trial carefully. What is the protocol? Is it phase 1,2,or 3? Are there different arms of the trial? Is there a possibility that he would get randomized to a placebo arm? How long has the trial been open and have there been any preliminary results reported? Any adverse events reported?


Good luck

[riderinthestorm]

4. I didn't know that about support groups but the positive attitude makes sense

I'm not sure I could convince him to go to a support group but we both understand and (try to) practice having a positive attitude about stuff. That's part of what's got me really upset is that he's dealing with it all really well, and I am not. It's just so not like me. I'm thinking I'm the one who needs the support group!

Anyway, we've both studied the trial. It's been going on since 2000 and this is the third phase. The first arm was discontinued in 2002 when it was apparant that it was harmful to the patients (they got chemo without ritumxib). He would be randomized into one of the other two arms: chemo with ritumxib (R-CHOP) or chemo with Bexxar. R-CHOP is the standard protocol for lymphoma at the moment so the study at least gives him a 50/50 chance with the "wonder drug" Bexxar. Nobody gets a placebo. I haven't seen any study results published yet - just some preliminary anecdotes about Bexxar which are pretty damn amazing. The relapse rates for those who have had Bexxar are so minimal as to be negligible. It has the same effect as a stem cell transplant without any of the terrible trauma of a transplant.

Adverse results are the same ones anyone gets from R-CHOP (the chemo with ritumxib). Bexxar is a radioactive drug so he would get the same side effects as anyone does from that which aren't persuasively negative as far as he is concerned.

Just writing all of this down is calming me down. I just really needed a sounding board and hate to unload this kind of stuff in the lounge. I have got to get a grip on the fear and anxiety.

[seemunkee]

5. Your perception of what is "normal" gets changed

I'll readily admit that I'm very lucky in that my cancer was found early and is often treated with just removal at my stage. However, I was talking to my wife while waiting for surger about how my idea of what is normal changed drastically. Get some support for yourself if you need it, even if your husband does not.

Can he get treatment with Bexxar without going on the protocol anywhere? Sounds like they are comparing treatment protocols to see which has the better survival and/or recurrence rates. I don't envy you the choice you have to make. My wife works on an NCI contract managing clinical trials and I still can't decide if I should go on one or not even with some her knowledge.
When do you have to make the choice?

Can you get friends or family to help with the driving. Even if you go on every trip it might help to have some company to lighten the load and the mood.

[flamingyouth]

8. I'm so sorry to hear this.

There's an organization called the National Organization of Hospital Hospitality Houses:
http://www.nahhh.org/ Maybe they can help?

(Pete Gross House here in Seattle is a member of that group, for people who come here for clinical trials at Fred Hutchinson Center and the University of Washington.)

This is all so overwhelming, I know. But I do have some good news. One of my good friends was diagnosed with TWO kinds of lymphoma two years ago and underwent nine months of chemo (one type was experimental - I'm sorry I can't recall the name but I can find out). He's doing very well now - in fact, he feels totally back to normal.

Someone (I think it was somebody here in this group) passed on this link from the American Cancer Society about families coping and my fiance and parents found it really helpful. Maybe you will:
http://www.cancer.org/docroot/NWS/content/NWS_1_1x_The_Family_Who_Learns_Together_Copes_Better.asp?sitearea=NWS&viewmode=print&

I know there's a Gilda's Club in Chicago. They are a tremendous resource - contact them and they can help you too.

I've had cancer twice in the past year. IT SUCKS. But we're here for you. :grouphug:

[pecwae]

9. I'm sorry to be so late in replying to your post.

I'm ever so sorry to hear about your husband. I hope you can work out something to take advantage Scenario B. A close friend of mine participated in a clinical trial for Stage IV NSCLA. Her tumor progressed during the trial and she switched to chemo for about 6 months duration. This was two years ago and she's still getting clear scans every three months.

Let us know what the decision is. We're here for the both of you :hug:

[seemunkee]

10. Did you decide on what treatment program to go with?

Please keep us informed on how things are going.

[OzarkDem]

11. U of C is a very good option

They will have the most experience and access to clinical trials for him. The travel may be a hassle, but its worth it. As things progress you may be able to see if there is some way U of C can coordinate his treatments or other care with the local oncologist so you don't have to travel all the time.

More and more cancer centers are finding ways to work cooperatively with outpatient oncologists in these situations.

Sorry to hear of your husbands news but it sounds as though he's in good hands with U of C.

[riderinthestorm]

12. Update!

So, my husband procrastinated and denied and didn't take any action for what seemed like the LONGEST time. He just didn't want to make the decision and I just didn't want to force him making any decision that HE would perceive as hasty. I will say though, that just having to be still, and wait, has calmed me down enormously. I feel a lot better about handling everything that is coming down the pike.

Anyway, last week he finally went and made an appointment with our primary care physician to get permission to do the clinical trial at U of C and today we got the referral letters from his primary care doctor, the green light from the insurance company, and we notified U of C that he's ready to start. He was supposed to get his scheduling nailed down from U of C today about when he should come in to begin this thing (he's still at work so I don't know yet when he starts but they indicated initially that it would be very rapidly).

I have to confess, I posted here in the first few days after we got the news and did the initial tests, biopsies, scans etc. and I was embarrassed to come back here after I exposed my weepy, wrecked, selfish self to you all (I mean jayzus, I was freaking about something as trivial as driving!?)

And now, now, I am wow! just incredibly touched at the people who responded with such love and concern and REAL links to helpful places and well... I just don't have enough skill to adequately express how grateful I am to all of you.

Anyway, I guess my updates are that we have strapped on the hiking boots and are preparing for the climb up this mountain. I am in a much better place on every level to really be there for him. And he's been working hard at boosting his immunity, gaining weight (he's 6'4" and 165 lbs so he needed some extra to start!), reading voraciously on his options and what to expect.

Wish us luck, good vibes, all that jazz. I am really, really hoping he gets into the Bexxar arm but we are both prepared to take where he's placed. From here on out I'll check in more frequently - perhaps even from one of the excellent hotel recommendations so graciously provided upthread!!

[seemunkee]

13. Good luck

No need to apologize for being emotional.

[mwdem]

14. Best of luck!

and keep us posted, please.

[JohnnyLib2]

15. So glad that a plan is shaping up.

And very best wishes to you both. As others said, don't let the emotionality faze you. Probably everyone here has been there, either as patient or family members. An astute oncologist once said to my wife, "welcome to the new world-- of cancer." When we chuckled, he said, "and are you soggy messes yet? " It helped to hear the Doc. say that.

[Maestro]

16. Yes, please keep us up-to-date

and no need to apologize. A fight with cancer is challenging but certainly winnable. Positive mind and body will certainly help the fight.

[riderinthestorm]

17. My husband had his first treatment yesterday.

He's in the R-CHOP arm of the study which while disappointing for me personally, will be fine. He really likes the U of C staff and that makes it all worth while - he is very philosophical and relaxed about everything.

So the first infusion yesterday was the Rituxin (5 hours). Afterwards it was like he had a really bad case of the flu: chills, fever, headache, aches and pains. He spent the rest of the day asleep and woke up this morning ready to go.

He's just taken off with our kids to a competition (we raise, train, and compete sport horses), camping no less. He's armed with a load of Tylenol, a thermometer, and the most ridiculous fur hat you ever did see (he loves this hat - I'll post a pic of it someday!) in case he gets chilled again, but he said he felt fine. It's the last competition in our area for the season and he was determined to be there.

Next week he gets another infusion of the Rituxin and his first chemo (CHOP) treatment.

As they say in our sport "Kick on and kick ass!"

[Auntie Bush]

18. Hey, "Kick on and kick ass!"

Where you been? You said you'd report more often. Your as bad as me and that's petty bad. Kick some ass on this site. I need to make a post update too.

How's it going? Yee gads...you must have some gas billwith all that traveling! That's almost as worrisome as the treatments. Only kidding!

[Hawkeye-X]

19. Consider SCT...

My father is a recent survivor of B-Cell Lymphoma (I have documented his story here, I'm sure you'll find it). He is now over 60 days past his transfusion and he is feeling good and growing his hair back. RCHOP was the same treatment that my dad went through with some success, but it came back - that's why he went through another round of chemo with SCT.

Lots and lots of family support helped my mother get through the battles of dealing with a sick person. Of course, living 4 blocks away from my parent's helped.

I hope this helps...