Unsure, Uncertain, ready to buckle seatbelt
Hello everyone, I've been reading this forum since April, when I discovered my NH Follicular Lymphoma has returned. 8 years ago (2009) an encapsulated tumor was found in my abdomen (was having serious pain and vomiting for a year then got bowel blockage). This tumor was removed, Stage 1, no chemo, no radiation, nothing. Fast forward - getting one or two bowel blockages since 2009, would go to ER, get morphine, IV fluids, refused NG tube and surgery for the scar tissue) and issue got resolved this way. BTW 63 years old and always super healthy, in good shape, just dealing with gravity HAHAHA!
WELL, on April Fools Day 2017 (NO JOKE!) another bowel blockage and MRI noted some cancer flare-ups. Saw onocologist, got PetScan and this determined that naughty cancer is now in my lymph nodes in groin and in pelvis. 3 places=Stage III?? (So nervous I forgot my list of questions for Doc). Only about 1/2" each at this time. Doctor recommended waiting until October, get another MRI and see if cancer has grown. IF so, he wants to start immunotherapy, which I'm told is pretty awesome in regard to little side effects. I don't know much about this treatment nor the time frame involved. What I do know is that I'm expecting a new grandbaby in W. Australia and had already booked tickets WAY before April Fools Day. Going for 5 weeks December 8th, home for 2 weeks, then Brazil for 3 weeks to celebrate my granddaughters 10th birthday there.
SO, my questions are: any good info on immunotherapy AND I think I must buy Travel Insurance to cover me for medical just in case I get sick while aboard. I realize I might need to postpone my trip (realist). I am taking 1mil Ativan for anxiety and riding my old 30 year old mule as often as possible BUT I am just now starting to stress, get a bit teary now and then, downplay my situation to my adult children, basically fall apart due to fear and the unknown.
What say ye all you very wise (and and some funny) survivors? Thank you for being here, for your knowledge, and your support. I'm keeping my uber funny sense of humor, living each day like it is my last (as we all should anyway right?) and just want to say LIFE IS TOO SHORT TO BE ANYTHING BUT HAPPY!
Thank you all again, Happy Trails from this cowgirl:)
Comments
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Vitamin "R"
Have you had Rituxan, aka Vitamin R? B-Cell Tumors often melt away like ice cubes when exposed to it. Other than allergic reactions at the start of infusion, it is a really benign drug. NOT a chemo drug. Or, depending on the tumours' location and activity, active surveillance might be appropriate.
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Vitamin "R"po18guy said:Vitamin "R"
Have you had Rituxan, aka Vitamin R? B-Cell Tumors often melt away like ice cubes when exposed to it. Other than allergic reactions at the start of infusion, it is a really benign drug. NOT a chemo drug. Or, depending on the tumours' location and activity, active surveillance might be appropriate.
No sir, I have been on "Wait and Watch" since 2009. At this time we are now watching I assume........not been given anything and feeling pretty lucky thus far! Doc thought it best not to give any meds until he can "size" the growths. At this time, I have no symptoms, would not have known about the cancer return except for the bowel blockage/MRI. Very happy to hear the infusions are relatively benign. Thank you so much for your valuable info. Means alot to have your support and input!! Happy Saturday!
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Rituxan
My primary Dr calls Rituxan a miracle drug. I had Rchop in 2015 to fight my FNHL and that was followed by RICE. I am currently 18 months into a 2 year Rituxan maintenance treatment.
When I saw my Dr Dec 2014 we were going over the usual list of issues when I added that I had a few weird bowel movments. I have IBS so I have a "normal" and not so "normal" view of my bowel movements. She decided to examine my abdomen and found an enlarged node. About 2 weeks after the first Chop (rituxan not approved yet) I ended up in the hospital with a perforate bowel. The enlarged node had shrunk but it also had an adhesion to the bowel and tore a hold in the bowel when it shrunk. The first time I had the Rituxan I did have a reaction but it was addressed and no problem afterwards.
So this year I am feeling a lot better. In remission for 1 + year. We went on a vacation in May and 2 days after we got back I wasn't feeling well. Felt bloated and just yucky. By that afternoon I could not have a bowel movment and was vomiting. It was a bowel blockage. Surgeon said there is no sure fire way to avoid it. He said to make sure I stay hydrated.
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I had far different lymphomas
Surgery for lymphoma is quite unusual. It is done normally only when life is at stake from a tumour pressing on an organ. Chemotherapy, or the new class of monoclonal antibodies (i.e. Rituxan) will shrink the tumors rather quickly. Medicine has had a tendency to wait and wait and wait with the slow-growing lymphomas. That seems to be changing as newer and less toxic treatments appear. In the past, treatment too soon would sometimes spur it into faster growth. A bowel blockage is reason to begin treatment straight away.
Here's a huge point: Whatever is seen in the scans must be biopsied and sent to pathology before anyone can state with authority that it is cancer. Let's presume that it is lymphoma. What if it is a different type that needs different treatment? Time to insist on a biopsy I'm afraid. I have not had Rituxan, but have had a drug of the same class which is reportedly more potent than Rituxan. Aside from an infusion reaction, there are basically no side effects.
As to staging, lymphoma is completely different from other cancers. I've been at stage IV with first one, then two aggressive T-Cell Lymphomas. I am stage 0 now. Lymphoma is treatable at all stages. Yours sounds like stage II, for what that is worth. And, those tumors - if that is what they are - sound pretty small. If they are causing the blockage, then it is treatment time. If not, then they can continue to be watched.
There are other factors, but with follicular lymphoma, a pretty normal lifespan can be realized these days. It is considered to be a chronic, manageable illness. So, all drama and maudlin might be premature.
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Stagemuledaze said:Vitamin "R"
No sir, I have been on "Wait and Watch" since 2009. At this time we are now watching I assume........not been given anything and feeling pretty lucky thus far! Doc thought it best not to give any meds until he can "size" the growths. At this time, I have no symptoms, would not have known about the cancer return except for the bowel blockage/MRI. Very happy to hear the infusions are relatively benign. Thank you so much for your valuable info. Means alot to have your support and input!! Happy Saturday!
muledaze,
If the three nodes were detected immediately adjacent, you are probably Stage 1 again. Lymphoma is among the simplest of cancers to stage: Just make a cross up-down along the sternum, and across at the diaphram. If no lines are crossed, usually Stage I . If one line is crossed, Stage II, and if two or three are crossed, Stage III. Stage IV occurs only when cancerous nodes invade a secondary organ, usually the bone marrow, and the second most common is the lungs, but it can go anywhere. I had nodes everywhere, for instance, but was just Stage III, because the bone marrow was uninvolved. But most lymphomas are treated based on cell type, not stage, such that your treatment would be the same regardless of staging -- just the dosing or duration would vary.
I hope remission returns soon and the trip goes well,
max
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Immunotherapy
Rituxan is the principal immunotherapy treatment for B-cell lymphomas (e.g., Follicular). It can be administered in various regimens.
I am not an MD, but my guess is, if your doctor says he wants to give it three more months, check again for growth and then start immunotherapy, he is likely 1) not too worried for the time being (which should reassure you...) and 2) probably considering such treatment as single-agent Rituxan weekly over a four-week period, and then possibly some Rituxan maintenance (once every eight, or perhaps twelve weeks).
Of course, it is better to give him a call and ask him those questions you forgot to ask while in his office. He will probably be able to give you some advice regarding your travel plans as well.
PBL
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Watch the travel
i was on a business trip to Egypt before I was diagnosed with lymphoma. It was scheduled for 3 weeks but I ended up staying for 28 days because I just couldn't bring myself to get on the plane for that long ride. Don't know where in WA you are going but good care can be had in Perth. Albany not so much. I would tend to want some answers before leaving. Home is where you want to be when you are ill. Also if it were me I would seek a second opinion. Your treatment and diagnosis both seem a little dicey to me. My opinion for what little its worth.
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StageStage
muledaze,
If the three nodes were detected immediately adjacent, you are probably Stage 1 again. Lymphoma is among the simplest of cancers to stage: Just make a cross up-down along the sternum, and across at the diaphram. If no lines are crossed, usually Stage I . If one line is crossed, Stage II, and if two or three are crossed, Stage III. Stage IV occurs only when cancerous nodes invade a secondary organ, usually the bone marrow, and the second most common is the lungs, but it can go anywhere. I had nodes everywhere, for instance, but was just Stage III, because the bone marrow was uninvolved. But most lymphomas are treated based on cell type, not stage, such that your treatment would be the same regardless of staging -- just the dosing or duration would vary.
I hope remission returns soon and the trip goes well,
max
Thank you for your response. I will be sure to inquire as to about cell type and stage. Either way, sounds very treatable and for this I am grateful. Have a great day!
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Rituxanlindary said:Rituxan
My primary Dr calls Rituxan a miracle drug. I had Rchop in 2015 to fight my FNHL and that was followed by RICE. I am currently 18 months into a 2 year Rituxan maintenance treatment.
When I saw my Dr Dec 2014 we were going over the usual list of issues when I added that I had a few weird bowel movments. I have IBS so I have a "normal" and not so "normal" view of my bowel movements. She decided to examine my abdomen and found an enlarged node. About 2 weeks after the first Chop (rituxan not approved yet) I ended up in the hospital with a perforate bowel. The enlarged node had shrunk but it also had an adhesion to the bowel and tore a hold in the bowel when it shrunk. The first time I had the Rituxan I did have a reaction but it was addressed and no problem afterwards.
So this year I am feeling a lot better. In remission for 1 + year. We went on a vacation in May and 2 days after we got back I wasn't feeling well. Felt bloated and just yucky. By that afternoon I could not have a bowel movment and was vomiting. It was a bowel blockage. Surgeon said there is no sure fire way to avoid it. He said to make sure I stay hydrated.
THank you for your response. I am glad to hear you are feeling better and got to take a vacation. Yes to hydration, seems to be key. Your input is very appreciated - wishing you continued good health. Have a great day!
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ImmunotherapyPBL said:Immunotherapy
Rituxan is the principal immunotherapy treatment for B-cell lymphomas (e.g., Follicular). It can be administered in various regimens.
I am not an MD, but my guess is, if your doctor says he wants to give it three more months, check again for growth and then start immunotherapy, he is likely 1) not too worried for the time being (which should reassure you...) and 2) probably considering such treatment as single-agent Rituxan weekly over a four-week period, and then possibly some Rituxan maintenance (once every eight, or perhaps twelve weeks).
Of course, it is better to give him a call and ask him those questions you forgot to ask while in his office. He will probably be able to give you some advice regarding your travel plans as well.
PBL
Thank you for your response. You are correct, my doctor is not too worried and for this I am gratefully reassured and I appreciate knowing possible treatment. He did say I might have to postpone my trip, which makes sense. I now have a very good list of questions thanks to all of you. Very appreciated and have a great day!
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Watch the TravelShadyGuy said:Watch the travel
i was on a business trip to Egypt before I was diagnosed with lymphoma. It was scheduled for 3 weeks but I ended up staying for 28 days because I just couldn't bring myself to get on the plane for that long ride. Don't know where in WA you are going but good care can be had in Perth. Albany not so much. I would tend to want some answers before leaving. Home is where you want to be when you are ill. Also if it were me I would seek a second opinion. Your treatment and diagnosis both seem a little dicey to me. My opinion for what little its worth.
Thank you. I will be 2 hours south of Perth, my son's father-in-law is a doctor and the entire family are nurses & midwives, so in very good hands. It is a very long trip so in a way, it is a blessing that I will have another MRI in October to better know how this is progressing and give me time to change/postpone flights if necessary. I think I will send my records to my original onocologist in my hometown for 2nd opinion, appreciate your input. Take care!
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Different lymphomaspo18guy said:I had far different lymphomas
Surgery for lymphoma is quite unusual. It is done normally only when life is at stake from a tumour pressing on an organ. Chemotherapy, or the new class of monoclonal antibodies (i.e. Rituxan) will shrink the tumors rather quickly. Medicine has had a tendency to wait and wait and wait with the slow-growing lymphomas. That seems to be changing as newer and less toxic treatments appear. In the past, treatment too soon would sometimes spur it into faster growth. A bowel blockage is reason to begin treatment straight away.
Here's a huge point: Whatever is seen in the scans must be biopsied and sent to pathology before anyone can state with authority that it is cancer. Let's presume that it is lymphoma. What if it is a different type that needs different treatment? Time to insist on a biopsy I'm afraid. I have not had Rituxan, but have had a drug of the same class which is reportedly more potent than Rituxan. Aside from an infusion reaction, there are basically no side effects.
As to staging, lymphoma is completely different from other cancers. I've been at stage IV with first one, then two aggressive T-Cell Lymphomas. I am stage 0 now. Lymphoma is treatable at all stages. Yours sounds like stage II, for what that is worth. And, those tumors - if that is what they are - sound pretty small. If they are causing the blockage, then it is treatment time. If not, then they can continue to be watched.
There are other factors, but with follicular lymphoma, a pretty normal lifespan can be realized these days. It is considered to be a chronic, manageable illness. So, all drama and maudlin might be premature.
Thank you - that is interesting about having a biopsy. It seems the presumption is since I was diagnosed with Lymphoma previously, these new hot spots are just that. So yes, what if it is a different type? Thank for for this topic and I will inquire about biopsy. Yes the doctor did say the next bowel blockage will force treatment - doing my best to do soft foods & lots of liquids. And I do feel lucky that this type of cancer is treatable. As for drama and maudlin - I have a huge personality that needs to be reigned in - I agree with your statement - keep me honest and keep it real - thank you!! Have a good day!!
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Twinsmuledaze said:Different lymphomas
Thank you - that is interesting about having a biopsy. It seems the presumption is since I was diagnosed with Lymphoma previously, these new hot spots are just that. So yes, what if it is a different type? Thank for for this topic and I will inquire about biopsy. Yes the doctor did say the next bowel blockage will force treatment - doing my best to do soft foods & lots of liquids. And I do feel lucky that this type of cancer is treatable. As for drama and maudlin - I have a huge personality that needs to be reigned in - I agree with your statement - keep me honest and keep it real - thank you!! Have a good day!!
Po and I virtually always agree on nigh-everything. But I want to reinforce his very basic point: Any recurrence of any Lymphoma very much demands a new biopsy -- always.
Lymphoma is very prone to morping into other forms of Lymphoma, but virtually always the change is toward a more aggressive type, seldom to a less agressive strain. Any Lymphoma can also readily morph into Leukemia, especially following certain chemo drugs. So never let an oncologist assume that a recurrence of the disease remains what it was before.
max
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Mulemuledaze said:Different lymphomas
Thank you - that is interesting about having a biopsy. It seems the presumption is since I was diagnosed with Lymphoma previously, these new hot spots are just that. So yes, what if it is a different type? Thank for for this topic and I will inquire about biopsy. Yes the doctor did say the next bowel blockage will force treatment - doing my best to do soft foods & lots of liquids. And I do feel lucky that this type of cancer is treatable. As for drama and maudlin - I have a huge personality that needs to be reigned in - I agree with your statement - keep me honest and keep it real - thank you!! Have a good day!!
Regarding behavior, just watch your mule....I've never seen one excited, or in a hurry. We can all learn much from animals.
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Twins and mulesTwins
Po and I virtually always agree on nigh-everything. But I want to reinforce his very basic point: Any recurrence of any Lymphoma very much demands a new biopsy -- always.
Lymphoma is very prone to morping into other forms of Lymphoma, but virtually always the change is toward a more aggressive type, seldom to a less agressive strain. Any Lymphoma can also readily morph into Leukemia, especially following certain chemo drugs. So never let an oncologist assume that a recurrence of the disease remains what it was before.
max
Thank you, I had no idea I should get a biopsy. Valuable information and sure glad I reached out to you all. Will call doc right now! As for the mule, you are right, I watch her ears as they are the monitor of what is going on. She has sure taught me patience and I know who the boss really is. Will keep you posted on status. Again, I am most grateful for your time and information.
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ImmunotherapyPBL said:Immunotherapy
Rituxan is the principal immunotherapy treatment for B-cell lymphomas (e.g., Follicular). It can be administered in various regimens.
I am not an MD, but my guess is, if your doctor says he wants to give it three more months, check again for growth and then start immunotherapy, he is likely 1) not too worried for the time being (which should reassure you...) and 2) probably considering such treatment as single-agent Rituxan weekly over a four-week period, and then possibly some Rituxan maintenance (once every eight, or perhaps twelve weeks).
Of course, it is better to give him a call and ask him those questions you forgot to ask while in his office. He will probably be able to give you some advice regarding your travel plans as well.
PBL
Thank you for your feedback. I now have a good set of questions and am very grateful. Have a great day!
0
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