I finally found a web page to discuss and see that others are having the same symptoms and side effects as me. I was diagnosed mid August with B Cell NHL (Stage 1E) and am half way through my journey. I have completed 3 of 6 cycles of the CHOP chemo. I have to say the first was the most horrible thing I have been through, but the last one I had was so much better. They say each treatment you have your body can tolerate it more, lessening the side effects. I just call myself Girl Interrupted now since I am living my life by a calendar. My next treatment is next Wednesday which will get me closer to the end of this journey. I think the port was the best thing we decided to do since one of the CHOP chemo can burn you skin and muscle if not directly in the vein. One thing I can say is I feel lost in all of this. I never had a chance to stop, think, and adsorb all of this info. I went straight from the GI doctor, to the oncologist, then straight to chemo. I know my life will never be the same and I think that is what scares me the most. All comments and encouragement is greatly appreciated >^_^<
I see your diagnosis is 1E....which tells me it's non-nodal. If you don't mind me asking, exactly where is your cancer and how was it discovered.
Mine was also non-nodal (in the palate of my mouth) but it's uncommon to see many posts on those particular types. Good luck with your treatment....hope it's not too brutal on your body.
it was discovered in my small intestine. I was having awful stomach pains, with bouts of diarrhea that came with any or everything I ate which had been going on more than a few months. What sent me to the GI doctor is the nausea that appeared out of no where--- that is when I knew it was more than stress. So far I have lost 18 pounds, of course the hair fell out, the nail beads in my hands have turned gray, and recently just a little more depressed. I know they say God does not give you more than you can handle, but I sometimes feel I missed that class.
I know where you're coming from......just hang in there, things will get better, I promise.
I didn't have the CHOP....my oncologist prescribed a different regimen (Treanda w/Rituxan). It's not near as toxic as CHOP, from what I hear, but still did a number on me the first few treatments. I didn't lose my hair, but it did thin out considerably. I lost a few pounds while in treatment but have gained it all back now :).
This whole thing blind-sided me and sometimes I still feel like it's all a bad dream that I should wake up from! This support group has helped me tremendously in coping with all the ups and downs, as I'm sure it will you, too.
Welcome to supportgroups--
Daynal is there a reason you're receiving CHOP and not R-CHOP? If your cancer was a T-cell lymphoma I could understand. Maybe you had a reaction to it the first time? Either way I would expect that Rituxan would have been an automatic aspect of your treatment unless there was some outstanding reason to exclude it.
outlook, the treanda/rituxan regimen gained steam last December when it was compared to R-CHOP in patients with .... I think SLL/CLL or maybe follicular lymphoma ... either way it was in patients with indolent lymphomas and found to be just as effective but significantly less toxic. In this case, the regimen itself may have been tough to get through and seemed pretty miserable, but where you may 'see' the difference is down the road, months or years from now, but how you'll see it is in its absence-- meaning, not getting R-CHOP means not receiving doxorubicin, which means your risk of cardiotoxicity from the drug is, of course, zero.
Y.Worry, I'm sorry to read of your dx as well. I assume your onc will go over the risks involved in the chemo you're getting, and one of them will be heart issues and doxorubicin. There are others too, but for treating moderately aggressive and aggressive B-cell NHLs, R-CHOP has proven to be effective. And while side effects are well-known, there's no certainty that you'll experience them, or that they'll be as bad as you imagine.
I hate to read about patients who feel or felt rushed into treatment. In the case of lymphomas, there are only a few of the 65 or so subtypes that, once diagnosed, call for immediate treatment because they're so aggressive, and those are fairly rare subtypes. A patient should be given time to get second opinions on their pathology results, to speak to a second oncologist, to be presented with all their options. This is just personal opinion, but there are very valid reasons for having second thoughts about any oncologist who is anxious to rush a patient into incredibly serious and major anti-cancer treatments like chemo without encouraging them to first get a second opinion. This is especially true if the oncologist has a conflict of interest-- in other words, if the chemo he or she is encouraging the patient to receive will be administered at his or her private practice office or clinic. It is one of cancer treatment's ugly open secrets, that oncs in private practice have a vested financial interest in administering chemotherapy to patients. I realize that these people have bills to pay and a business to run, but that should not have any effect on the treatment course they think is best for you.
Ross, yes the actual protocol name is CHOP+Rituxan, so is that also called R-CHOP? The entire combination is Doxorubicin, Cytoxan, Vincristine, and Rituxan. The oncologist explained all were excellent agents for treating NHL, needless to say, its an all day visit so I pack a lunch, snacks, and crossword puzzles. I would always get extremely sick from the Neulasta shot given the next day and told the doctor. She decreased the dosage since my white blood cells were in good range and most of those side effects from the first two treatments were minimal. I was a little taken by the possible side effects from the Doxorubicin also. She said the cancer cells should be killed by the fourth treatment, which is coming up Wednesday, so I am going to ask, or better yet tell her I would prefer not to take that chemo any longer.
Y.Worry, you may not even have the same side effects because everyone reacts differently~~ I know you will fare well. Please make sure you keep us posted on your journey, reading similar posts gives me comfort that I am not alone on this trail.
Outlook1... thanks for the words of encouragement, please keep me updated of your status as well.
Ross, I understand why you suggest a second opinion but I feel confident from the references I've had to this oncologist. Since abdominal nodes and neck nodes have already been affected, waiting for another appointment will also let the disease progress further, no? I'm open to suggestions and I will ask him about alternatives on the next visit. Will also ask about effects of Doxorubicin, thanks for bringing that up.
Danal, I'll take it as it goes. I hope your body will adjust soon and I will relate my experience, thanks.
Y.Worry-
Well, so far as is known, in lymphomas it can’t be argued that waiting for another appointment will allow your disease to progress. But we’re talking about a short amount of time, a couple weeks at most, not enough time to really risk letting the cancer get out of hand.
Now, you feel confident in the references to this oncologist, and that’s good. However keep in mind that your oncologist isn’t the physician charged with making your diagnosis; your diagnosis comes from the pathology lab after review of your biopsy. Your oncologist then orders a work-up that includes all those tests – CBC, LDH, PET/CT, the whole list of them, along with a history and an exam – tests that are essential in the clinical staging of your cancer. The reason I mention this is because, while not true for everyone, many people don’t feel comfortable with telling a doc they want a second opinion, but in these cases, pursuing a second opinion is to ensure that the lab got it right, not the onc. And you don’t have to go very far on the internet to find case upon case upon case of misdiagnosed cancers that were then improperly treated.
Now you have a B-cell lymphoma, and these are said to be easier to diagnose properly, with fewer misdiagnoses and altered diagnoses than T-cell lymphomas. Still, when a recognized international expert in blood cancers like James Armitage says “I won’t treat a patient for a lymphoma unless an expert hematopathologist [blood pathologist] … has reviewed the slides” it should give some pause.
I know you’ve got a ton on your plate already, so do this: if you have a copy of your biopsy results it will include the name of the pathologist. If not, it’s easy enough to find out. Hematopathology in the US is a subspecialty among pathologists requiring board certification (American Board of Pathology). The person who signs off on your biopsy should have this certification. He or she doesn’t need it to review your biopsy, but they should have it.
Ross
Hi all and welcome! Y-worry, what kind of B cell Lymphoma do you have and do you have a stage yet? I completely agree with Ross on the second opinion. After I was DX, all I wanted was to get treatment and the last thing I wanted was to get a second. But it turned out I didn't have an agressive form of B cell (1st DX was Diffuse large B cell) I rushed to get the Port put in. It was my husband that thought everything was moving too fast. I was in the panic mode, while he was being pretty rational. The second proved I have a slow growing form of small B cell lymphoma called SLL and though my stage is IV, all my numbers have been good, so I am on "Watch & Wait" which though it takes some mental adjustment, it allows me to wait on using the Chemo drugs until I have to, because my type is incurable, I may have to have treatment more than once and I don't want to build up a resistance to the drugs early, when I may need them more later on. Once I found out my subtype,I could zero in on all the info about it and gain more info than any doctor has time to share. After research help me fill in the blanks, I had more confidence about my treatment plan. As in my case, many times the truth can be read different ways. I do have some large B cells, but most were located in the node they took the biopsy from.
I know how you feel, we all just want this to be over and done with, but it's like remodeling a house, (been doing ours for a while now) it all seem simple when you begin but once you tear down that first wall you discover, "Oh ****, the plumbing is bad!" or a hundred other things that screw with your fantasy time line. You start to wonder if you will ever be done, will you live in this mess forever, etc? But you won't, you will make the proper repairs, (some, you'll hire out) and room by room it will get finished. Granted, when it's finshed it won't look the same, but you will feel secure in knowing the structure is sound, the eletrical works and the plumbing won't leak. With this SLL I am thrown in with a bunch of engineers who like to spread out the plans and ponder for months, so I told them, just give me a call when you guys are ready to tear down some walls, for now I'm going to lunch and shopping. Hope this helps some. We are here for you.
Y-Worry, I too am in agreement with KBeale and Ross on the importance of second opinion in lymphoma treatment. We really can't be of much value to you without knowing type and stage as there are huge differences to the approach for dealing with NHL, depending on those two factors (Grade is another one that is worth knowing).
I suspect, based on your doctor's reaction, that you have been diagnosed with DLBCL (diffuse large b cell lymphoma) or one of the other aggressive NHL subtypes. However, I have also observed quite a few people on these boards with indolent (slow growing, incurable but treatable) lymphomas who have moved right to treatment. There is a pretty big school of thought out there that this limits future options, as KBeale wrote about. If you do have dlbcl, you should still discuss second opinions with your doctor. If there is any doubt,at all, about the diagnosis or you have an indolent, you should get a second opinion.
I have an indolent lymphoma. I have had three opinions at this point and have yet to do any treatment beyond radiation which I did because I was dxd at an early stage and that is an accepted protocol in early stages. It is the only point where I had a shot at a cure but it failed in my case.
In any event, I wish you welcome and a journey as uneventful as it can be as you deal with this situation. One last question, since we are of a similar age - did you serve in Vietnam? If so, you should know that you are eligible for compensation from the VA as there is a direct connection between NHL and Agent Orange exposure. I have a claim pending as the VA says anytime in country is presumed to have caused exposure.
Good health,
kermica
KBeale,
This is all new to me so I didn't ask the oncologist for type and stage detail. At this point I'm too ignorant on the topic to ask many questions. He did say that I'm high grade which means the aggressive type, right? From what I've been reading here I'll be able to ask a few questions next visit. Apparently this disease has been going on for several months and I was under the impression that the longer it lives that the stage will worsen. At the same time I want to be sure that the treatment is correct. I should have done more reading before I went on the first visit. thanks for your reply!
Y-
Right, high grade is aggressive, although the term is relative; these days grading is generally reserved for indolent lymphomas, like follicular lymphoma, SLL, etc. At any rate, since you're in the midst of doing blood tests and scans, you very likely haven't been staged yet because they don't know (although they probably have some idea). That's what all these tests are for, so you're on the right path.
Ross
Dear Y-Worry, boy do I understand what you are feeling! It was all Greek to me, I didn't even know there where soooo many types of Lymphoma. I read a recent report that said most Americans have no idea that there are different kinds of Lymphoma, all needing different forms of treatment. I went for almost a year trying to find out why my neck nodes wouldn't go down. And that fact told my first Onc that the first DX had to be wrong. It raised a red flag, that if I really had "Diffuse", I would have had a large growth extending out from my neck. It grows that rapid. She said you would have come to see me months ago. But because she had me put a port in while she went on vacation, then, questioned the Path findings after she got back, made me uneasy. That's when we sought a second. She was correct about the Path DX being wrong,and suspected it was SLL and wanted to treat it with Chemo. She never mentioned the "Watch & Wait" option. At MD Anderson, they repeated several tests, bone marrow,CATS, and did a heart test that I hadn't had done before, which told if my heart could even handle the chemo. Then, they took a new node sample from under my arm pit, to see if the orginal DX from the neck nodes was correct. All this testing confirmed the SLL, but with only small amounts of large B present. I have been on the Watch and Wait for 6 mos now and at first I thought this is dumb- why not kill the cancer now? Even though my doctor explained the why to me, I still didn't understand completely. It was too much to digest and even though I still have days of panic (when wierd stuff happens to my body) I now have come to understand that if this SLL "transforms to an aggressive form" I still will have time to get treatment and kill it, which takes some of the stress off. I hope you have the "Watch and Wait" option.
Speaking of Agent Orange- I grew up at Pease Air Force Base during the 60's and my own research has shown that in the 70's the base was discovered to have been dumping jet fuel, and other toxic chemicals into one of two natural water systems that flow under the base. Hmmmmmm, the same systems we got our drinking water from. Would love to see a study on how many of us have now developed some kind of cancer. The base had to do massive clean up under EPA that has taken several years and I believe still going on. I know the boomers are all coming of age to start the ol cell mutation stuff, but the rate is alarming at how many now have cancer. Please keep us in the loop after your next visit. I will let you know what I find out from mine next week. I'd tell you not to worry, but know I did regardless of what anyone said. What did help was crying, talking,reading (skip info 3 yrs or older, too outdated) and most of all- praying, by myself and by others!
Kermica: Regarding Viet Nam, I barely missed out on that due to pure luck (the December 1969 draft lottery), so Agent Orange is not involved for me. Thanks for the kind wishes and I also hope that the coming months are uneventful for us both and I can see the reasoning of holding off treatment in your case.
Ross: In two weeks or less I should know the outcome of the test results. My oncologist is also a hematologist, which I just looked up as being different from a hematopathologist. UR right, this is confusing...
KBeale: I've always been adverse to going to the doctor, much less having ports installed for toxin delivery. The thought makes me somewhat uneasy but I remind myself that many people go through much worse than that. I trust in the Lord to deliver me.
KBeale, there was also long term ground water pollution at Camp LeJeune during the time I was there (this one caused by a dry cleaner dumping solvents)which is now part of a massive department of Defense funded study to measure impacts and possible compensation actions. I was not impacted as the ground water that was polluted was the drinking supply for base housing so it was the married guys and their families who were put at risk in that case. Here is the wikipedia link if you want to know more:
http://en.wikipedia.org/wiki/Camp_Lejeune_water_contamination
I don't know about Pease AFB but you may want to start poking around to see what is out there. I found this report from the CDC which seems to say that the pollution at Pease was not contributory to cancer (but this is the only one I looked at): http://www.atsdr.cdc.gov/hac/pha/pha.asp?docid=1198&pg=2. Of course, Like Agent Orange for me 40 years ago, what does it really matter other than our technological revolution of the past 100 years may truly teach us the meaning of "unintended consequences".
Y.Worry, (I love that screen name - easy to say, hard to do), You only arrived at this place yesterday and are already starting to figure things out...very impressive, keep it up and you will become master of your destiny regarding this disease and you need to do that. You are the only one who, at the end of the day, has your interests at heart without any competing influences (except for the rest of us here, of course). That is a good thing to know and understand.
Good health,
kermica
Kermica, I think I read that report on Pease. Thought it was funny because unless people turn in their stats how would they connect the dots. Oh well, that is all water under the bridge, (or should I say base?) I'm not blaming anyone, and was relieved to read that they still don't know what causes my type, though you can find hundreds of people who think they know. With any cancer it seems we always want to blame someone or something to help us make something rational out of why it happens. But there are soooo many variables out there that cause things to happen it's just as true to say my name was drawn out of a hat, or I got the short straw, to which people would respond, "Oh, now that makes sense!"
Y-Worry, as you can see by our responses we understand and hope for the best for you and your care. Please forgive us if we have added to the confusion you are feeling at this time. God Bless!
Thanks for the sincere and informative responses. I'm fortunate to have found this group.
One of my first thoughts was 'what caused my cancer?' If it was the kind of foods I've eaten, if it was because I used to drink like a fish when I was in my 20's, if it was because I've had x-rays done throughout the years for various things, was it the MRI?, or something genetic? Also, saw that if your father was older when you were conceived, mine was 45 when I was born and he used to be an x-ray technician several years before that, would that cause that? I've been curious and yet, I have no regrets. I've had a good life and I hope to have many more good years. Reminds me of a t-shirt I saw once, 'EAT RIGHT, EXERCISE, DIE ANYWAY!' :o) I'm still in denial that I have cancer, I don't have any symptoms, I'm not on my death bed, I feel great....it's the person next to me that has the cancer, it's not me. Supposed to find out on Thursday what type it is, had a dream the other night that I was looking at tests results from a body scan and the cancer was everywhere, quite a nightmare. Hanging in there and it helps SO much to have the good people here to talk to about all this. My family and friends have been so good to me but having this site really helps, to find people that are going thru similar things. Those are my thoughts for the day, thanks for listening!!! :o) Have a good week all, we can do it!