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Two experts, two different recommendations: What do I do next?

Todd_Whitmarsh
Posts: 8
Joined: May 2011

Hi Folks,

Here is a good one for the collective wisdom of this fine assemblage of unwilling subject matter experts. Please read the entire message; and it is bulky, like my disease.

I finished 6 rounds of R-FND this past August. Before that I underwent 3 rounds of R-CVP that produced minimal results. Eight months and 9 cycles in total of chemo infusions.

In the last 11 months I have enjoyed 4 CT scans, two PET scans, one bone marrow aspirate and bone chip extraction, one surgical biopsy of a larger lymph node, two ultrasounds and one standard chest x-ray. Diagnosed with SLL, stage 4a, advanced and bulky confined to my abdomen, spleen and bone marrow. 50 - 60 % marrow infiltrate, FISH results good, CD 38 good, B2 Micro-globulin good.

The second PET scan two weeks ago showed the spleen nearly back to normal in size (21 cm enlarged vs 15 cm today), the cancer in my my abdomen appears dead and lymph nodes have shrunk to almost normal in size (splenic hilum lymph node is largest remaining at 2.4 cm by 3.2 cm vs 11 months ago 4.4 x 4.9). The greatest SUV uptake in any node is 2.0. SUV uptake in the spleen is 1.9. Portocaval nodes have shrunk from 6.6 x 4.5 to 2.0 x 1.0 today.

I obtained a second opinion from DR. Jakub Svoboda at the Perelman Center for Advanced Medicine, Univ. of Pennsylvania on 28 Sept. He recommended a bone marrow aspirate and biopsy (BMB) to determine if the cancer has been cleared from my marrow and he recommended no further treatment until evidence of progressive disease. Pending the BMB, he believes I am in complete remission. His practice is part of a not for profit public medical center.

The hematologist/oncologist that has treated me for the last 11 months recommends Rituxan follow on treatment every three months for many years. He sees no need for another bone marrow aspirate and biopsy. He believes I have shown a remarkable response to treatment but did not use the term complete or partial remission yesterday when I had labs and a consult with him. His name is Dr. Robert Reid in Fairfax Virginia. Great doctor and very compassionate person. His practice is part of US Oncology out of Houston Texas. A for profit corporation.

My CBC results for the last two months have been nearly perfect and my blood has never shown a propensity towards cancer/lymphoma/CLL.

Which way do I go?

Two qualified experts, both provided the exact same information, and offer completely different recommendations for follow on. And I am not smart enough to figure out the best option.

Thanks in advance for your thoughtful responses.

jimwins's picture
jimwins
Posts: 2111
Joined: Aug 2011

I did a little research on both physicians but I wouldn't say that was
exactly helpful. I noted Dr. S: attended Yale Univ Medical School so
he is probably not a dummy.

Boiling it down to simple terms:

Cancer Type = SLL (researched: Indolent type, generally not
considered curable)

Dr. S:
Pending results of BMB (goal, clear from BM), no further
treatment until evidence of progressive disease. Believes
you are in complete remission.

Dr. R:
Does not recommend BMB, didn't use term remission but thinks
great response to treatment and recommends Rituxan maintenance
every 3 months for 2+ years.

Okay, this is a tough call. I know there are people on here
who are on Rituxan maintenance for indolent lymphomas and hopefully
they will chime in.

1 I would ask both doctors their reasoning behind their recommendations.
Maybe that will help you with your decision.

2. Also, what does Dr. S. plan if your BMB is not clear?

From my reading, with slow growing/indolent lymphomas, I think some
physicians like to buy as much time as they can by holding off on some
treatments until necessary (watch and wait is an example).

If it were me and affordable, I'd probably want BMB results (I can't believe I
said that - I don't really want to go through a BMB again ;) to find out if
it shows "clear". That would maybe bring some peace of mind (or not I suppose).

Indolent lymphomas tend to have recurrence but it could be a very long time
before that happens. Dr. R. is wanting to prevent recurrence with maintenance
and Dr. S. is kind of saying do nothing until recurrence?

Anyway, I hope I haven't muddied the waters even more here but it's my
take on it.

Hopefully others will offer better help :).

Sending you warm and positive thoughts and congratulations on
responding well to your treatments!

Jim

catwink22's picture
catwink22
Posts: 281
Joined: Sep 2009

Hey Jim you beat me to the post, but I'm glad we both kind of said the same thing.
Sorry Todd the waters are probably real swampy now!
Cat

catwink22's picture
catwink22
Posts: 281
Joined: Sep 2009

Hi Todd,
If things aren't hard enough huh? Certainly we aren't doctors and can't tell you what is the "Right" treatment, but maybe we can point out some issues for you to consider.
How do you feel about the BMB and not knowing if it’s in your marrow or not? If it were me I think I would want to know, although the thought of going through that procedure again is tough! If it’s still there you may want to continue with some kind of treatment, if not then maybe a “watch & wait” approach is ok.
Rituxan has been used in treatments and maintenance with very good results and few side effects, but is that something you want to keep in your back pocket for down the road if you should need it?
How will you be monitored if you do the “watch & wait”?
I can tell you that I've been told Non-Hodgkin is incurable and most of the time is referred to as NED (no evidence of disease) because supposedly it never really goes away - hence incurable (although there are some here who can say otherwise), so the fact the doctor never said the word “remission” is not surprising.
I don’t feel like I’m making your choice any easier, but hopefully these are good questions to ask yourself before you decide. Good Luck! Let us know how things go and we’re here for you!
Cat

Todd_Whitmarsh
Posts: 8
Joined: May 2011

Thanks to you both Cat and Jim.

DR. S. would make treatment decision and follow-on recommendation based on how much if any infiltrate from the SLL is remaining in the marrow.

Dr. R. does not care about the bone marrow because either way he recommends one Rituxan infussion every 3 months and a CT scan every year for many years (his words). He believes that considering how advanced and bulky the disease was when I started chemo in December of last year, the probability of a durable remission is not high.

My concern is that repeated exposure to Rituxan can deplete you B cells and thus your immune system, there is that 1/10 of one percent chance of the fatal brain disease unique to just Rituxan use, and finally the information I have read concerning your cancer cells developing resistance to the Rituxan over time and with increasing exposure. Rituxan has some downsides. Certainly not as toxic as the Fludarabine, but something to consider.

jimwins's picture
jimwins
Posts: 2111
Joined: Aug 2011

Hi Todd,

I like Lisha's suggestion as it probably would help.

Take "statistics" and what you find on the Internet
with a grain of salt. The 1 in a 1000 chance of fatal brain disease -
I'm assuming that is 1 in 1000 patients (not 1 in 1000 individual treatments).
That means that 99.9% of patients don't get the brain disease - very good odds :).

I would also factor my age and quality of life considerations as well.
The more time you buy, the more chance of new drugs/treatments
becoming available in the future.

I know you're wanting to make a 100% rational decision but you may
have to rely a little on your "gut" as well (no pun intended but you
can laugh if you want to ;)).

As Cat and Lisha can attest - I'm the silly one at times.
I was so tempted to title my first response "And a partridge in a pear tree..."
because your list of the past several months struck my funny bone that way.

(Disclaimer: I'm in the hospital on my final cycle (6) of R-EPOCH- YAY!
and under the influence of prednisone.)

A little levity is good for "longevity".
There's no shortage of hope and support here, Todd.

Jim

forme's picture
forme
Posts: 1162
Joined: Aug 2010

Hi Todd

I have read what Jim and Cat posted. You seem to have some good advice and some good doctors too.

Since you have received two different thoughts from your docs, given the same info, if it were me I would go a step further.

What about a third opinion at another major cancer center. Bring your medical history to the new doc. Then, based on the third docs recomendation, see which other is closest to this third one. There are pros and cons with both, so any extra advice could really help you out.

This is what I would do. I would go with the two that are the closest or the same.
Having two thoughts that are very different, a third could be the best way to make a very difficult choice a little bit easier.

Best of luck, let us know what you decide.

Lisha

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Getting a 3rd opinion sounds good to me..it sure can't hurt. Best wishes to you and please share back what you decide to do. Sue (FNHL-2-3A-6/10)

KC13167's picture
KC13167
Posts: 215
Joined: Jun 2010

Hey, Lisha,
You took the words right out of mt mouth.

A third opinion may sound a bit much but; I've done it so people do, do it. Mine was for pain control but, if you aren't sure of the path to take, aren't 100% happy with options or just aren't comfortable with the answers you are getting, then another opinion is the way to go. Like the others have said, sometimes it's better to wait on more chemo and sometimes it's not. The point is that the first time you use it is when it's most potent in your body. I feel that i would want to save it for when I really needed it. As you know, this is a serious decision.

Wishing you get the best info to allow you to make the best possible decision.

Kellie

bluerose's picture
bluerose
Posts: 1112
Joined: Jul 2009

This is pretty common, two doctors seeing the disease different ways as far as treatment options are concerned so if neither clicks with you totally I would go for the 3rd opinion. I would do that if it were me in that position but I would do some research into your specific type of cancer and see who is the leader in that particular type in the states then go see that doctor. I did that with my lymphoma, went to the best in the country and got his impression and went with his opinion as it seemed the soundest.

You could also think of going to places like Dana Farber in Boston where they also have late effects clinics so that they might be more tuned into the what might happen down the road if you went with this treatment or that treatment. Just an idea.

It's a tough call but the 3rd opinion with a little homework and research about where that 3rd should come from, the most specialized in your type, would make the most sense to me.

Good luck with it all and keep us posted.

Blessings,

Bluerose

Todd_Whitmarsh
Posts: 8
Joined: May 2011

Thanks everyone for your heartfelt but brain centered responses. I still do not know which way to go. I guess I will flip a coin. I suspect if I get a third opinion, I will have a third opinion. Quite frustrating. There must be body of knowledge/experience somewhere that is recognized as the final word and treatment plan for SLL/CLL.

bluerose's picture
bluerose
Posts: 1112
Joined: Jul 2009

What did you mean by 'duh....spittle drooling down my chin' and 'brain centered responses'?

The value of a 3rd opinion is about getting someone else's take on it so that it might link up more with one of the other doctor's ideas as to what you should do for treatment thereby making your decision easier.

As far as a 'body of knowledge/experience' that is recognized as the final word, most likely there is a well accepted protocol for this or that kind of cancer and staging but each person's situation can be just a little different from the norm so not all protocols fit the person exactly. Hence the difference in opinions. Unfortunately there is still alot of question marks when it comes to treatments for cancer, would be nice if things were in final word form but unfortunately there is alot that they still simply do not know and can not predict. What works for some may not work for others even if the cancers are the same.

Hope all goes well with whatever choice you make.

Bluerose

catwink22's picture
catwink22
Posts: 281
Joined: Sep 2009

Hi Todd,
I feel for you, this is so difficult.
Maybe as an outside observer I can shed a little light. I went back and re-read all the posts and your post about Dr. S and Dr. R jumped at me. You mentioned a lot of concerns about the Rituxan with Dr R, but I noticed you didn't mention any concerns with Dr. S.

Maybe make the ole list with two columns Pros & Cons and see which one has the most Pros.

I thought I read a post (Jim?) which broke it down as Dr. S wants to wait and see if there is a recurrence before he does further treatment and Dr R wants to treat now whether there is a recurrence or not. Something to put in your Pro or Con column?

I think you know which way you are leaning and you want to hear someone say "Yes, that's what you need to do." The only person who can say that is you. Be informed, weigh your options and make the best decision you can with the information you have. That's all any of us can do in our own journeys.

Good Luck! I pray that the knowledge and answer will come to you.

jimwins's picture
jimwins
Posts: 2111
Joined: Aug 2011

I think you are basically hoping to avoid have further possibly
unnecessary treatments which I understand wholeheartedly.

Maybe you should get the BMB test/results and let that guide you?
Getting the BMB done doesn't commit you to either choice and
may help you in deciding.

If the BM is clear, then maybe you can hold off on treatments.
If the BM is not clear, go forward with treatments.

Find out what Dr. S plans if the BMB is not clear, maybe he
agrees with Dr. R on the treatment plan in that case?

We will support you in what ever YOU decide.

Hugging through the mud :),

Jim

Todd_Whitmarsh
Posts: 8
Joined: May 2011

Thanks again to all for the great responses. My two doctors have discussed my situation on the phone. For clarification, they both specialize in NHL cancers. Both are a board certified hematologist and oncologist. Dr. S participated in the development of the new T-Cell chimeric that was widely reported just two months ago as a possible cure for CLL/SLL and other cancers.

I will be undertaking the post induction Rituxan every three months for years and years. One CT a year for restaging purposes and no new bone marrow aspirate test.

I sit down again with my attending physician the first week of November. I am scheduled for the first Rituxan treatment the first week of December. I have not had chemo since 6 August.

This disease sucks. It is official.

catwink22's picture
catwink22
Posts: 281
Joined: Sep 2009

Hey Todd,
I'm glad you were able to work it all out and come to a decision. I think that's half the battle! I have been on “Rituxan only” maintenance for 2 years, once a week, for 4 weeks every 6 months. It's very tolerable, it took almost all the Lymphoma away except in one tiny spot under my arm and I have had NO increase in that spot.

I do want to give you a head's up on your first infusion, it's not uncommon to have an allergic reaction. It's usually severe shaking (like the DT's) and sometimes throat swelling...not trying to scare you...these are managed with pre-treatment drugs like Benadryl and a steroid (and other cocktails). They should stop your infusion immediately and wait until your symptoms go away and re-start with a very slow drip. This will all be explained in detail.

I'm telling you this because I want you to know that I DID have the reactions and I was managed FINE and it was only on the first infusion (it took 8 hours to administer). I start my 4th one on Nov 1, I am down to 4 hours for the infusion and that’s with 3 other drugs given by IV also.

Another hill to climb to getting better! Wish you the best! and yes this disease sucks, but it could be oh so much worse, at least we have treatments that are working!
Take Care!
Cat

jimwins's picture
jimwins
Posts: 2111
Joined: Aug 2011

I'm glad you came to a decision and
super extra extra good luck!

In my chemo I was given rituxan at the start and
I was fortunate that I never had a reaction.

And yes, cancer sucks big time!

Hang in there :).

Jim

Todd_Whitmarsh
Posts: 8
Joined: May 2011

Thanks for the comments. I have had nine cycles of chemo with Rituxan and I had the shaking reaction during the second infussion. The last seven Rituxan infusions over 6 months had no associated reactions. My concern is the that regular and unending Rituxan exposure can cause the cancer cells to build up an immunity to this monoclonal antibody, and of course the whole fatal brain infection without a cure is a bummer too. Sucks to be me.

jimwins's picture
jimwins
Posts: 2111
Joined: Aug 2011

The brain disease I think you said is a chance of 1 in 1000 (assuming patients).
I know there are people here who have been on the rituxan for close to two years
successfully (maybe some longer).

Unfortuanately none of us chose to play this card game of cancer but I'd say
you've been dealt a pretty decent "hand" at this point.
I'm grateful for that for you :).

I try real hard to focus on the positives but I'm just as human as anyone
and I do have my pity parties. I'm very thankful for the anxiety medication
because it really takes the edge off of that.

Sometimes it's very difficult to read or respond to posts here because the
situtations are so bleak, I have no clue what to say and I have to be very
careful not to let it bring me down as I'm in this battle too and need
positive energy for my own healing.

I think it's fine and normal to have concerns but we can't let them dominate
our thinking or we're defeating ourselves by joining the "enemy".
The only side of cancer I'm on is the one kicking it's butt ;).

Despite everything that has happened to me Todd, I have so much to be thankful
for. All I have to do is read some of the posts here and I realize how
fortunate I am.

I didn't mean to get on a soapbox and please understand I'm not being judgemental.
I do understand where you're coming from. Sometimes we have to look at things
from a different perspective and that's where I'm coming from.

It sucks to be any of us having to deal with this.
Kick some cancer butt! You got all of us on your side you know :).

Hugs,

Jim

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