My Little Chat With The LLS

So, for those of you that are not familiar with what the LLS is, it is my abbreviation for the Leukemia and Lymphoma Society.  The LLS is an awesome advocate for those that have been diagnosed with blood cancers, such as:  Lymphoma, Hodgkin’s Lymphoma, Leukemia and Myeloma.  They are also an awesome resource and offer support to families and friends afflicted with one of these horrible diseases.  On their website, they have a little button near the top of their main page that says “Live Patient Help 10-5 ET”.  Lately, as many of you know because of prior posts, I have been worrying about whether or not MOPP is the best treatment for me, and whether or not it is working.  I have gone back and forth in my mind, for a probably way too long, 2 months or so about getting a 2nd opinion and how to go about it.  I have also been afraid, as other’s have often held the same fear, that I would almost be “cheating” on my oncologist, or being unfaithful to him.  And I was afraid that I would offend him, or make him think that I was doubting his medical ability, by asking questions and seeking that 2nd opinion.

Now, let me preface the rest of the post by saying, I am not doubting the ability of Dr. Clark in the least.  Dr. Clark has been more than a wonderful doctor to me, and I have always felt comfortable with him (which is unusual for me and doctors) and he has MANY times gone above and beyond for me, be it calling on random nights to check how I am feeling, or rearranging his schedule on his days off to attend and perform surgeries for me.  He has done so much for me, and his medical attention to me has been out of this world.

Again, the only thing I am doubting wondering, is whether or not this MOPP treatment is the best treatment for me.  To bring some of you up to speed, if you haven’t been following my story so far, is that I am not able to receive the “prime” treatment for Hodgkin’s, which is ABVD, because I am not able to receive the B-portion of the regimen, Bleomycin.  The reason I am unable to receive the Bleo is because it is often quite toxic to the lungs and can actually cause fibrosis to the lungs, and worse.  Because of that, Dr. Clark chose to put me on MOPP, which used to be the standard and best treatment for Hodgkin’s.  Granted that was 20+ years ago.  ABVD has since shown to be superior in treatment itself, causing less relapse, causing less long-term side effects, and causing less secondary cancers down the road.

Also, since I have started MOPP, my night sweats have returned, which had disappeared after my very first treatment of A_VD.  Now they are occuring almost nightly.  My cough seems to slowly be coming back, which had since disappeared, and there is controversy whether or not 2 chest xrays taken a month apart, had shown enough progress.  So with all that being said, I decided to take advantage of the Live Chat Feature on the LLS Website and this is how it went:

Chat with Brandi (brandi@mylymphomastory.com) - August 7, 2008 2:04 PM
Browsing www.lls.org from ____________
Please wait for an operator to respond.
Your call is being transferred to a new operator.
Your call is being transferred to a new operator.
Your call is being transferred to a new operator.
Your call is being transferred to a new operator.
Rhonda: Welcome, my name is Rhonda. May I ask you some questions before we begin in order to better serve you? [2:05:45 PM]

Rhonda: Are you inquiring about yourself, a family member or friend? [2:05:51 PM]

Brandi: Sure [12:05:53 AM]

Brandi: About myself [12:05:57 AM]

Rhonda: Is the diagnosis a leukemia, lymphoma or myeloma? If so, can you tell me approximately when it was confirmed? [2:06:08 PM]

Brandi: Dx 4/08 Stage IVB Hodgkin’s [12:06:23 AM]

Brandi: Mixed Cellularity [12:06:30 AM]

Rhonda: May we have your date of birth and your ethnicity? The Leukemia & Lymphoma Society (LLS) is a health organization and this information enables us to assess and improve our services. [2:06:38 PM]

Brandi: 1.2.79 Caucasian [12:06:49 AM]

Rhonda: Okay thank you. Finally, may I have your zip code for our records? [2:07:13 PM]

Brandi: _____ [12:07:17 AM]

Rhonda: Thank you, how may I help you today? [2:07:43 PM]

Brandi: Well, I was wondering what is the standard treatment for those that cannot receive ABVD because of the Bleo. [12:08:02 AM]

Rhonda: Often the regimen will be given without the Bleo, especially if the patient has already had two or more rounds of it. What has your doctor suggested? [2:09:11 PM]

Brandi: He has put me on MOPP, which is concerning me. I have just started my 3rd cycle of MOPP. I don’t think it is working as well as the A_VD did. I never received the Bleo, because my PFT’s had not been done yet. [12:09:58 AM]

Brandi: But instead of treating completely with the A_VD, he put me on MOPP [12:10:33 AM]

Rhonda: Why did you not have your PFTs? That’s strange. The MOPP is understandable though because of your stage. Perhaps that doctor felt that AVD would not be aggressive enough. Why do you feel that it’s not working as well? [2:11:55 PM]

Brandi: Well, my night sweats have come back - which they had stopped right away after my 1st treatment of AVD. I didn’t have my PFT’s because they couldnt get me in right away - because we moved so quickly in getting me treated. The plan was to hold the Bleo until I had my PFT and then tack it on at the end. But yes, my night sweats have come back, but wondering if that is due to the prednisone. On 5/12 I had a PET, right after my very first AVD Tx, and it showed shrinkage. I have had 2 chest xrays, since, a month apart, there is a little bit of shrinkage, though not a great amount. My onc also mentioned that the radiologist doesn’t think there was any change in the xrays. My onc also mentioned last friday that he is concerned that I have not lost my hair. [12:15:19 AM]

Rhonda: How many rounds have you had of the MOPP? [2:16:13 PM]

Brandi: # 5/5/08 First cycle of A_VD given # 5/12/08 First PET scan, showed shrinkage # 5/19/08 Second treatment, end of A_VD given # 6/6/08 First cycle of modified MOPP given, substituted Nitrogen Mustard with Cytoxan # 6/13/08 Second treatment of modified MOPP given # 7/3/08 First cycle of the full MOPP regimen given, including the Nitrogen Mustard # 7/11/08 Second treatment of MOPP given [12:17:15 AM]

Brandi: and then started this cycle last friday [12:17:22 AM]

Rhonda: Some doctors have been prescribing RICE or ICE for more advanced or aggressive cases. Why was your MOPP modified? [2:18:21 PM]

Rhonda: Also, where are you being treated? [2:18:56 PM]

Brandi: they didnt have the nitrogen mustard on hand so they did a cycle and substituted it with the cytoxan [12:19:06 AM]

Brandi: ________________ [12:19:21 AM]

Rhonda: have you considered going for a second opinion at ___________ Albuquerque? [2:20:43 PM]

Brandi: I have, but wasn’t sure what to do and how to go through that, and also I didnt want my onc to feel I was doubting him. I know stupid. [12:21:11 AM]

Rhonda: I think you need to ABSOLUTELY go to ____________ for a consult. There are several things about your case that suggest you are perhaps not getting the best care. [2:23:56 PM]

Rhonda: Any halfway decent oncologist would encourage you to go for a second opinion at a larger center if you do not seem to be responding well to current treatment. The fact that they had to modify your MOPP because they had no nitrogen mustard is ridiculous and dangerous. [2:25:07 PM]

Brandi: Ouch. [12:25:20 AM]

Rhonda: All you need to do is call ____________, tell them you have Hodgkin lymphoma and want a consult with a hematologist oncologist. Your current doctor can have all of your records sent over. [2:25:58 PM]

Rhonda: I apologize if that sounded harsh, but this is your health and your life, and there is no reason to not get the best care available, [2:26:25 PM]

Brandi: Do you know about how long the process will take? No, not at all. And I understand and appreciate everything you have been saying. I only get one chance with this, for the most part, unless I want to send myself straight for an SCT, which I would love to avoid at all costs. I just don’t know the best way to handle all of this. So you really have been helpful. [12:27:34 AM]

Rhonda: Thank you for understanding! Do you mean the process of getting the consult? [2:29:13 PM]

Brandi: Yes. [12:29:19 AM]

Rhonda: It could be very quick. Call _________ at _____________. [2:30:24 PM]

Brandi: Awesome, I appreciate that. [12:30:43 AM]

Rhonda: Then as soon as you have the appt. call your doctor and ask to have all paper records, scans and biopsies sent over. [2:30:55 PM]

Brandi: Ok [12:31:03 AM]

Brandi: You have been tremendous help. I really do like my oncologist, and have been very happy - I am just wondering now if this is best thing, and especially with what he said about the radiologist, and now he is concerned I still have my hair. I just thought it might be time to take action now. I really do appreciate it. Is there anything specific you would suggest me asking or looking for? [12:32:13 AM]

Rhonda: With regard to what? [2:32:45 PM]

Brandi: Asking for my consult, or while receiving my consult/second opinion. [12:33:33 AM]

Rhonda: Make sure you feel comfortable with the new physician. If you are not, you can always ask to see another doctor at ________ or even go to a different center. Some people go for 3 or 4 opinions. I would also ask the doctor at ___________ about clinical trials. That may be an excellent next step for you and the doctors there should be knowledgeable about them. [2:35:21 PM]

Brandi: Awesome. Well I do thank you very much! [12:35:50 AM]

Rhonda: You’re very welcome. Good luck with everything! And please contact us again if you have any questions. [2:36:25 PM]

Brandi: Definitely! Thank you [12:37:03 AM]

Rhonda: You’re welcome. Take care. [2:37:17 PM]

Operator ended chat
Length of chat: 00:33:33

So.  With all of that.  I decided to contact another Cancer Center today, for the sole purapose of gaining a 2nd opinion.  I actually hope to get 3 or 4, if possible, by the time all of this is done.  The problem with all of this, is even though it is a science, it is never an exact science.  This is really one of those times that a manual would be nice to know exactly what to do.  And even after all the opinions I get, I really do hope to still be treated at my current Cancer Center, and by my current oncologist.  What is all your guys’ takes on this?  What do you think?  Some direction right now would so be appreciated and helpful.