Sharing "The News"
After several weeks of reading this discussion board while waiting for my final pathology report to come in, I am finally posting. I have Follicular Lymphoma, Low grade Stage 3B. I received this diagosis on Friday, Sept 2nd just about 4 weeks after being told I probably have Lymphoma. A tennis-ball sized mediastinal mass was discovered by CT after a chest x-ray revealed something suspicious. (The chest x-ray was to determine if spleen ruptured due to a broken rib. I broke a rib cleaing out the inside of my car, believe it or not. My foot slipped while I was leaned over the arm rests and landed on my rib cage. Had it not been for that broken rib I'm not sure when this would have been discoverd.
I'm divorced and live alone. My two adult children have known the possibility of this from Day 1. I also shared with my brother and a small but very close knit circle of friends. After receiving the official diagnosis on Friday, we shared the news with my 91 year old father.
Treatment starts on Sept 12. Rituxan will be Day 1 (4 or 5 hrs of infustion) and Day 2 will be something else. I have an education class on the 8th when I will learn more details.
I was told by my oncologist I probably will not lose my hair and that nausea shouldn't be terrible. I was happy to hear this as I plan to work during treatment.
I am self-supporting and really have no other option.
Right now one of my biggest questions is how much to share and with how many people? I have so many friends that I care about and know that they care about me. I'm concerned that if they find out through the grapevine, their feelings will be hurt. Yet, at the same time It has been exhausting just trying to keep up with informing the close friends and family that I've already shared with.
I could really use some input here and so appreciate having this board.
Thank you,
Pat
Comments
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Welcome
Pat,
My mother-in-law's name is Patricia, and we call her Pepperment Patty, which I suspect is the basis of yor screen name.
Welcome here. Follicular is the most common indolent strain of NHL, so lots of folks can give you feedback based on personal experience (I had HL, and cannot myself). Since the oncologist does not anticipate you loosing yor hair, you are probably slated for for one of the newer "rituxan-plus- x" NHL regimens that are somewhat displacing the older, R-CHOP and EPOCH standards.
Nausea, for patients who receive EMEND or similiar anti-nausea meds, is usually not a problem these days. I did six months of R-ABVD, and never had nausea once.
Who to tell ? It varies. Some tell everyone via social media, while other are very private, and tell virtually no one. I told people I encountered face-to-face, but the jungle drums had everyone on earth knowing within a few days anyway. There is no right or wrong -- just go with what you are comfortable with.
A friend with breast cancer last year familiarized me with Caringbridge a site for ill patients and their families exclusively. I believe it is free, and it is an easy way to keep family and friends up-to-date with your situation. Essentially an easy way to start a personal blog. You may want to check that site out also. It use is a bit different from here, which people moslty use to speak with others with cancer or survivors, and ask technical questions, or anything whatsoever that they feel like. Many use both sites, since the price is the same -- free !
Your strain and is ordinarily very beatable. I hope your journey is relatively easy, and that the folks here provide what you need...
max
https://www.caringbridge.org/signin
max
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Thank you
Max, thanks so much for your quick response to my question and yes, you are correct in that my name is Patricia. Peppermint Patty was a nick name from many years ago!
I did look into Caring Bridge (thanks for the link BTW) and thought about posting the link via social media. Geographically, most of my famiy and friends are not nearby so the face-to-face thing just won't happen. I also thought that the blog format might be somewhat cathartic for me. I appreciate your input on that, as well as the treatment meds, and look forward to hearing from others.
Thanks for the encouragment,
PP55
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Hang in there!!
Max has great info always!! I shared with my friends right away and it was so helpful. They all would call me or text during my treatments and see if there was anything they could do. A few didn't know how to handle it...but I understood. I think most close friends would feel hurt if you didn't tell them. Just my 2 cents. Hang in there...I can tell you have a good attitude. That goes a long way!!
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Hi Pat
I have the same dx as you indolent B-cell lymphoma , folicullar stage 1A. I was dx in June and I am by now at my #4 chemo round. I am having R-CHOP regimen that includes Rituxan as well as monoclonal antibody. Unfortunatelly I lost my hear after first chemo. My tumor as yours the size of golf ball located in my pelvis/sacral spinal cord area. Regarding your question, I told my family right away my daughter and son in law. I told my boss and my closest collegues because even if you work you still miss the day of chemo and maybe some other days you are not feeling too good and leave home early. I do work as well ans so far I missed only my chemo days. I told my closest friends as well they could support you and give you courage. Positive attitude is very important and if many people are praying for you the better.
May God be with us.
Dana
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Jeff, thanks so much for theJeff148 said:Hang in there!!
Max has great info always!! I shared with my friends right away and it was so helpful. They all would call me or text during my treatments and see if there was anything they could do. A few didn't know how to handle it...but I understood. I think most close friends would feel hurt if you didn't tell them. Just my 2 cents. Hang in there...I can tell you have a good attitude. That goes a long way!!
Jeff, thanks so much for the encouragement. I appreciate your input so much.
PP55
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Dana, I guess you will bedana-mihaela said:Hi Pat
I have the same dx as you indolent B-cell lymphoma , folicullar stage 1A. I was dx in June and I am by now at my #4 chemo round. I am having R-CHOP regimen that includes Rituxan as well as monoclonal antibody. Unfortunatelly I lost my hear after first chemo. My tumor as yours the size of golf ball located in my pelvis/sacral spinal cord area. Regarding your question, I told my family right away my daughter and son in law. I told my boss and my closest collegues because even if you work you still miss the day of chemo and maybe some other days you are not feeling too good and leave home early. I do work as well ans so far I missed only my chemo days. I told my closest friends as well they could support you and give you courage. Positive attitude is very important and if many people are praying for you the better.
May God be with us.
Dana
Dana, I guess you will be going in soon for a CT scan to see how the treatment is working for you? I pray that you will have good news.
It's great to know that I should be able to go to work and even if I lose my hair I know that so much could be worse.
And yes, the more people that are praying the better.
Hoping the best for you,
PP55
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Privacy
like you I have FNHL, in my case allover, but especially in the mediastinal region. Mine is Stage 4. Based on my experience of almost 5 years with this I observed the following. 1) you will probably live a long time 2) people will treat you differently and many will be uncomfortable around you. For these reasons if I were to do it again I would keep it to a small group who know. Trouble is people talk. "Two people can keep a secret if one of them is dead". People bond by sharing secrets. My advice is feign normalcy and try to live a full active life. Don't whine or seek compassion. I was fortunate to have a caring wife who supported me. My real joy is my dogs. Friends to the end! My 3 granchildren don't know of the seriousness of my condition. Surround yourself with people who don't know you have cancer. Around them I feel normal and they treat me normally. As I said my dogs love me unconditionally. You may want to consider a pet.
Best of luck. I know this is non conventional advice. Hope it stimulates some thought. We are all different.
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Who to tell.....
Pat sorry you're in this group but glad you have found this site, there are many people here who will help you along and calm your fears. I wish when I started my journey, I was a member.
I don't want to repeat the great advice you already received. My two cents may not applicable for my situation was different. I chose not to tell anyone because my father was diagnosised three weeks after me and was very ill. Having two young children, both me and my father having stage IV NHL, I needed to protect my parents then children. Long story, I won't bore you with the ugly details.
What I can tell you is (that at times) hiding my cancer was harder than having cancer but it was also a blessing.
I watched my dear father go through his Cancer journey and witnessed the love and support he received from family, friends....... everyone. I could only image what that was like. I think what scared me the most was not having anyone pray for me.
Fortunately for me my best friend is an oncologist and her husband is my oncologist. Even more fortunate is that they are rather fancy in the oncology world. Having earned a PHD, Ivy League trained and well respected; I was in good hands. My husband is an attorney and hires world class doctors all the time. His research proved invaluable. I also have another doctor in Boston because of the friend situation who is probadly one of the best on the east coast for what I have. Triple bonus.
For the first year it was only them and my sisters-in-law (2) who knew. I knew one would need support so I told both. So for me it was a very small world. I did learn that it's not the number but the quality of people you trust with this information.
At times I benefited from my secret because when I walked out the door and ran into people I could just me the old me and not the new me with cancer. The downside of coarse was no one knew the hell that I was going through. I still had to do Christmas and birthdays and host dinners and perform like everything was fine. Why, because if my father knew, it would have killed him before the cancer did. Now I have to protect my mother.
You see there is no perfect scenario you just have to do what's best for you. I would have loved to of had prayers and support but I did learn to dig deep, deeper yet and then some more. I have become a warrior of sorts and that's great for me.
I wish you a seamless journey with the best results!
Blessing to you!
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GKH I hear what you areunknown said:Privacy
like you I have FNHL, in my case allover, but especially in the mediastinal region. Mine is Stage 4. Based on my experience of almost 5 years with this I observed the following. 1) you will probably live a long time 2) people will treat you differently and many will be uncomfortable around you. For these reasons if I were to do it again I would keep it to a small group who know. Trouble is people talk. "Two people can keep a secret if one of them is dead". People bond by sharing secrets. My advice is feign normalcy and try to live a full active life. Don't whine or seek compassion. I was fortunate to have a caring wife who supported me. My real joy is my dogs. Friends to the end! My 3 granchildren don't know of the seriousness of my condition. Surround yourself with people who don't know you have cancer. Around them I feel normal and they treat me normally. As I said my dogs love me unconditionally. You may want to consider a pet.
Best of luck. I know this is non conventional advice. Hope it stimulates some thought. We are all different.
GKH I hear what you are saying, I really do. For instance, I spent the long weekend with my daughter and her family. They live 3 hours away. She had confided in a few close friends and I saw them while I was there. While I did appreciate the positivity and warm reception I received, I did feel different and I didn't like it. The biggest part of me wanting to tell people (friends, aquaintances) is my fear that they will be upset with me if/when they find out. I don't know why I am that way because I really ought to be thinking about what's best for me!
I'm not good at secrets. I wear my heart on my sleeve. On the other hand I don't want to appear to be seeking attention or sympathy, either.
What a delicate balance beam we walk with our human emotions.
I'm so thankful to have found this discussion board and appreciate your input Oh, I do have a cat who loves me unconditionally. I really believe she thinks she's a dog , *>
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007 I think your UsernameOO7 said:Who to tell.....
Pat sorry you're in this group but glad you have found this site, there are many people here who will help you along and calm your fears. I wish when I started my journey, I was a member.
I don't want to repeat the great advice you already received. My two cents may not applicable for my situation was different. I chose not to tell anyone because my father was diagnosised three weeks after me and was very ill. Having two young children, both me and my father having stage IV NHL, I needed to protect my parents then children. Long story, I won't bore you with the ugly details.
What I can tell you is (that at times) hiding my cancer was harder than having cancer but it was also a blessing.
I watched my dear father go through his Cancer journey and witnessed the love and support he received from family, friends....... everyone. I could only image what that was like. I think what scared me the most was not having anyone pray for me.
Fortunately for me my best friend is an oncologist and her husband is my oncologist. Even more fortunate is that they are rather fancy in the oncology world. Having earned a PHD, Ivy League trained and well respected; I was in good hands. My husband is an attorney and hires world class doctors all the time. His research proved invaluable. I also have another doctor in Boston because of the friend situation who is probadly one of the best on the east coast for what I have. Triple bonus.
For the first year it was only them and my sisters-in-law (2) who knew. I knew one would need support so I told both. So for me it was a very small world. I did learn that it's not the number but the quality of people you trust with this information.
At times I benefited from my secret because when I walked out the door and ran into people I could just me the old me and not the new me with cancer. The downside of coarse was no one knew the hell that I was going through. I still had to do Christmas and birthdays and host dinners and perform like everything was fine. Why, because if my father knew, it would have killed him before the cancer did. Now I have to protect my mother.
You see there is no perfect scenario you just have to do what's best for you. I would have loved to of had prayers and support but I did learn to dig deep, deeper yet and then some more. I have become a warrior of sorts and that's great for me.
I wish you a seamless journey with the best results!
Blessing to you!
007 I think your Username says a lot about your choice not to share with too many people ,* > I appreciate your thoughts and willingness to share.
I know, in my heart, that even if 10 million people called me "friend" who knew of my new plight, there would still only be the handful of besties who are here for me when the going gets s----y.
Blessings to you.
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Hi PatPeprmntPat55 said:Dana, I guess you will be
Dana, I guess you will be going in soon for a CT scan to see how the treatment is working for you? I pray that you will have good news.
It's great to know that I should be able to go to work and even if I lose my hair I know that so much could be worse.
And yes, the more people that are praying the better.
Hoping the best for you,
PP55
I am going to have a Pet scan on Sept 14. I hope to get good news and finish chemo soon. I read all the responses you got for your question and I think indeed each of us is different and unique in the same time. From my experience that I told all my collegues I could see that some of them were speechless and embarassed and some of them just plain supportive. But this is human nature sometime faced with a cancer diagnostic you don't know what to say and how to react. I think we have to be who we are. I was impressed by the person that had the same diagnostic as her father. How hard it might be to hide this from him. I also did not tell my parents that are in their mid 80 and live far away from me in Europe. I don't want to make them worry when they cannot help me at all being so far away.
Dana
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Hi Dana!dana-mihaela said:Hi Pat
I am going to have a Pet scan on Sept 14. I hope to get good news and finish chemo soon. I read all the responses you got for your question and I think indeed each of us is different and unique in the same time. From my experience that I told all my collegues I could see that some of them were speechless and embarassed and some of them just plain supportive. But this is human nature sometime faced with a cancer diagnostic you don't know what to say and how to react. I think we have to be who we are. I was impressed by the person that had the same diagnostic as her father. How hard it might be to hide this from him. I also did not tell my parents that are in their mid 80 and live far away from me in Europe. I don't want to make them worry when they cannot help me at all being so far away.
Dana
Hi Dana!
I , too, hope your get good news from your PET scan. I will be praying that you do!If my Dad lived farther away I would not have told him. However, he lives very close to me. I considered not telling him (he's 91 and still pretty bright) but he and I have always been so close. He seems to know when something is up. No, of course we don't want our elderly parents to worry about us! My mother died of cancer when she was 42. Very quickly. It was rare and there was no treatment. She died less than 6 months after her diagnosis. Then my stepmother died of brain cancer. Again, no treatment available. So the hardest thing for my Dad and my brother is realizing that this is different for me. I am sure that everyone on this board gets it. No matter what we are facing, we do not want our loves to be concerned.
Im hoping the very best for you dana, and I hope you will post after you get the results from your scan.
PP55
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Update on Sharing the News
Just a quick update on my post. I did a Caring Bridge website then shared it via social media and email. The response I've received has been overwhelmingly positive and I am very happy about that.
I'm getting ready to post a journal update on CB due to my "education" visit today. Required prior to Cycle 1.
My therapy drugs are Rituxan and Bendamustine. Ding, Ding, Ding! Max you get first prize for guessing that combo!
Rituxan and Bendamustine on Day 1, 8 hr infusion. Day 2 is Bendamustine only, 90min infustion.
Not sure how that will be on a Monday/Tuesday. I am trying to work as much as possible so it will be interesting to see how I hold up until the weekend!
I feel so blessed to have found this discussion board. It has been very helpful just reading other posts as well.
Blessings to each of you,
PP55
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Hi PattiPeprmntPat55 said:Update on Sharing the News
Just a quick update on my post. I did a Caring Bridge website then shared it via social media and email. The response I've received has been overwhelmingly positive and I am very happy about that.
I'm getting ready to post a journal update on CB due to my "education" visit today. Required prior to Cycle 1.
My therapy drugs are Rituxan and Bendamustine. Ding, Ding, Ding! Max you get first prize for guessing that combo!
Rituxan and Bendamustine on Day 1, 8 hr infusion. Day 2 is Bendamustine only, 90min infustion.
Not sure how that will be on a Monday/Tuesday. I am trying to work as much as possible so it will be interesting to see how I hold up until the weekend!
I feel so blessed to have found this discussion board. It has been very helpful just reading other posts as well.
Blessings to each of you,
PP55
I've been in a cave for the last week or so. Bad cold and just blah.
Anyway I was diagnosed 12/2014 with FNHL. My PCP found the lump in my abdomen when I mentioned had 3 unusual bowel sessions. (I have IBS which is why I watch my bowel movements.) She ordered a CT scan and ultrasound on thyroid. They also found I had pluersy. Biopsy done on mass. When my PCP called to say that the initial CT scan & ultrasound showed lymphoma and to give me the name of an oncologist she called me on my cell. So she did not know I was at work. I worked for 2 mgrs at the time. The one mgr is a breast cancer survivor and was at my desk when I got the call. She ended up being the first person I told. I gave my husband the news when I got home. Did tell the other mgr the next day but no one else. I decided to not say anything to my kids (all adults) until I had all the details.
So Jan 2015 I saw a Dr at Rush Chgo for a second opinion. That is when I was told it was stage 4. After that I called each of my kids to tell them what was going on and what I know about the treatment. Calling my brother ended up being the hardest since our parents are gone and it's just the 2 of us. I let them tell their kids. The next day I put together a list of the people I knew at work and worked with and then emailed them what was going on. A couple of days later I did the same at home for family & friends. Somewhere in there was church. We have a very small group so I just told them all what was going on.
Like you found, the out pouring of support floored me. Some of our consultants asked if it was ok to ask their families back in India to pray for my recovery. I told them "a prayer is a prayer and I'll take all I can get and I don't care what religion".
Around that time I had a cath put in to drain the pleursy so I could breath. My husband was trained how to drain the fluid. Jan 13 2015 had my first chemo of R-Chop. Last one was in May. Once the dates were set I emailed the work people as to the date of chemo (1 day) days working from home (5 work days) and days I planned on being in the office (9 work days). I sent updates when the scheduled changed for medical appts.
Keeping everyone updated, especially at work, meant that most face-to-face meetings were the old "Hi, how are you.", "hanging in there". They already had the details and it meant I wasn't spending a lot of time verablly updating each person as I saw them. (I work in a large IT dept.)
After the R-Chop was done there were still signs of the lymphoma. So the next step was 3 cycles of RICE (Aug, Sept & Oct) as a prep for Stem Cell. There were more bone marrows, CT/PET Scans between Nov & Feb and we started the Stem Cell collection in March. It was slow and the third day they stopped it before we began because the platelets had dropped too much. SCT was put on hold. Anoter round of tests showing no sign of the FNHL and it was decided that there would be no SCT, just 2 years of Rituxan maintenance. I was also told that if it were to come back they would use other treatments that are in trail or developement now. When I sent out my emails with this news I made it the last. Told everyone I would let them know if there were any changes.
One thing I wish I had not done. With the last chemo in Oct my hair had started growing back pretty good by March. Since the SCT schedule was the collection followed by the chemo/transplant, after the second day of the collection i cut my hair as short as I could. That was 5 months of growth. so now I am back at the 5 month point again. I would suggest to anyone getting a treatment that could cause them to loose their hair, don't cut or shave your hair until it actually starts to fall out.
Talking about working. I had to be in the hospital for 3 days for the RICE so I brought my laptop and my work laptop. I set myself a schedule so that I worked during the day and played in the evening. (I am a geek.) Made the days go quick and kept my mind off of what was going on.
I hope this help Patti and good luck.
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Yes, Lindary, this is verylindary said:Hi Patti
I've been in a cave for the last week or so. Bad cold and just blah.
Anyway I was diagnosed 12/2014 with FNHL. My PCP found the lump in my abdomen when I mentioned had 3 unusual bowel sessions. (I have IBS which is why I watch my bowel movements.) She ordered a CT scan and ultrasound on thyroid. They also found I had pluersy. Biopsy done on mass. When my PCP called to say that the initial CT scan & ultrasound showed lymphoma and to give me the name of an oncologist she called me on my cell. So she did not know I was at work. I worked for 2 mgrs at the time. The one mgr is a breast cancer survivor and was at my desk when I got the call. She ended up being the first person I told. I gave my husband the news when I got home. Did tell the other mgr the next day but no one else. I decided to not say anything to my kids (all adults) until I had all the details.
So Jan 2015 I saw a Dr at Rush Chgo for a second opinion. That is when I was told it was stage 4. After that I called each of my kids to tell them what was going on and what I know about the treatment. Calling my brother ended up being the hardest since our parents are gone and it's just the 2 of us. I let them tell their kids. The next day I put together a list of the people I knew at work and worked with and then emailed them what was going on. A couple of days later I did the same at home for family & friends. Somewhere in there was church. We have a very small group so I just told them all what was going on.
Like you found, the out pouring of support floored me. Some of our consultants asked if it was ok to ask their families back in India to pray for my recovery. I told them "a prayer is a prayer and I'll take all I can get and I don't care what religion".
Around that time I had a cath put in to drain the pleursy so I could breath. My husband was trained how to drain the fluid. Jan 13 2015 had my first chemo of R-Chop. Last one was in May. Once the dates were set I emailed the work people as to the date of chemo (1 day) days working from home (5 work days) and days I planned on being in the office (9 work days). I sent updates when the scheduled changed for medical appts.
Keeping everyone updated, especially at work, meant that most face-to-face meetings were the old "Hi, how are you.", "hanging in there". They already had the details and it meant I wasn't spending a lot of time verablly updating each person as I saw them. (I work in a large IT dept.)
After the R-Chop was done there were still signs of the lymphoma. So the next step was 3 cycles of RICE (Aug, Sept & Oct) as a prep for Stem Cell. There were more bone marrows, CT/PET Scans between Nov & Feb and we started the Stem Cell collection in March. It was slow and the third day they stopped it before we began because the platelets had dropped too much. SCT was put on hold. Anoter round of tests showing no sign of the FNHL and it was decided that there would be no SCT, just 2 years of Rituxan maintenance. I was also told that if it were to come back they would use other treatments that are in trail or developement now. When I sent out my emails with this news I made it the last. Told everyone I would let them know if there were any changes.
One thing I wish I had not done. With the last chemo in Oct my hair had started growing back pretty good by March. Since the SCT schedule was the collection followed by the chemo/transplant, after the second day of the collection i cut my hair as short as I could. That was 5 months of growth. so now I am back at the 5 month point again. I would suggest to anyone getting a treatment that could cause them to loose their hair, don't cut or shave your hair until it actually starts to fall out.
Talking about working. I had to be in the hospital for 3 days for the RICE so I brought my laptop and my work laptop. I set myself a schedule so that I worked during the day and played in the evening. (I am a geek.) Made the days go quick and kept my mind off of what was going on.
I hope this help Patti and good luck.
Yes, Lindary, this is very helpful.
I, too, have found that it's easier at work since everyone knows, and when I post an update on Caring Bridge, I don't have to go over and over and over everything. That just makes me weary and I feel like PLEASE, let me get to work! I need to work.
Also, I am a photographer. When I have the strength to go out and shoot I feel normal and I don't feel like I have cancer. It is a wonderful respite for me!
Good luck to you, Lindary. I hope you stay in remission.
PP55
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Hi Pat, I wanted to reach
Hi Pat, I wanted to reach out to you. I had hodgkins lymphoma 23 years ago and am free from the desease. I am now battling uterine cancer and am hoping for the best. Ever since i found out about uterine cancer i have been involved on this CSN board. I peek in this section once in a while. I wanted to let you know I am almost divorced. Waiting for the papers to come. Ive done this cancer stuff with out my husband. I know for me it helped to hear others in that situation. I have a ninty year old grandpa. He just recently got put in a nursing home and his wife died two short years ago. Hes been through alot. Although he wasnt told anything about this new cancer i have now in the begining because we felt it would be too much for him, with my okay, he was eventually told that i had cancer again. I dont have many people in my family who have had cancer. A few on my dads side of the family but i dont know them very well or they have already died. My 90 year old grandpa ( who is on my mothers side) has had cancer and because of that i have a bond with him. Thats why i wanted him to know. Thanks for sharing your story.
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Janaes, I'm so sorry that you
Janaes, I'm so sorry that you are going through a divorce and that you have cancer again. Divorce and cancer are both horrible, but in my case I would rather be facing this battle alone than with him. I don't know if I would survive the former.
Thanks for reaching out to me. Keep in touch and let me know how you are doing?
0
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