New on Here, Had Recurrent Diffuse Lrg B Cell Lymphoma and a Stem Cell Transplant Recently

DJS628

Hi Po

Hi Po.

I emailed the long term care team and they said to be careful for the full year.  They said that some people even a year out get a cold and it hits them harder and takes longer to get over.  Some colds even worsen and they may end up with pnuemonia.  But sometimes they lump allos with autos together.  Are allos supposed to be more careful or both of us?  I don't want to risk getting sick!  But I also want to enjoy life.  Open to advice.

Thanks!

 

po18guy

DJS628 said:

Hi Po

Hi Po.

I emailed the long term care team and they said to be careful for the full year.  They said that some people even a year out get a cold and it hits them harder and takes longer to get over.  Some colds even worsen and they may end up with pnuemonia.  But sometimes they lump allos with autos together.  Are allos supposed to be more careful or both of us?  I don't want to risk getting sick!  But I also want to enjoy life.  Open to advice.

Thanks!

 

Good advice from doctor

Well, I am approaching three years out. In early 2017, despite being a hermit with only occasional forays into the outside world, I manged to contract simultaneous rhinovirus (common cold) as well as human respiratory syncytial virus (HRSV), one of them developing into pneumonia in the lower left lobe. Being immune suppressed, I had the rhinovirus for three solid months, but stayed out of the hospital - a very good thing. Earlier this year, I contracted rhinovirus again, as well as human metapneumovirus (HMPV), a recent virus isolated in 2001. No pneumonia this time.

You have to be the freak, wearing mask and gloves. Have hand sanitizer at all times. You have to turn away from those who cough and sneeze. A hassle, but I'm certain that it pays off. The bad is that people then tend to avoid you - or is that the good? Have never been an OCD hand-washer, but it's now hard to tell the difference. You would be amazed a what some transplant patients either do, or consider doing. At our training class pre-transplant, we were cautioned as to foods and food preparation. One person wanted to eat sushi! Raw fish with zero immune system. AYKM?

Common sense plus a bit more should see you through just fine. if you had an allo transplant and are immune suppressed, worst case scethat they turn your new immune system loose. GvHD could flare, but it could also save your life by defeating the infection.  

DJS628

Thanks Again

So it doesn't matter which transplant you had?  You still have to be super cautious a year out (or more)?  What if all your counts are back to normal?  Would I still be considered immunosuppressed eventhough my counts are back where they should be?

Not sure how many of the doctors or nurses told me that, too:  wear a mask and people will stay away from you, so you can't get their germs.

 

I haven't been to church yet.  Only to the hospital for my blood draws, appointments, drug store for my prescriptions, to my parents' house,  and very rarely have I stopped at a store.  I just went for a few things and made it as fast as I could.  I don't want to get paranoid about it, but...

Is it because we don't have our immunizations yet?

 

My father keeps bringing up wanting me to go on a cruise with he and my mom.  But I think it's too soon.  He's thinking in June and that would be just 5 months post-transplant.

Sorry to hear you had rhino virus that long and did get  phuemonia one time.  I've been reading posts here and there and that's what I read--people tend to get others' colds easily and it's harder to shake off and sometimes developes into pnuemonia.  I also read when they got off the acyclovir they got the shingles?!!  Eeek!

 

Someone wanted to eat sushi right after their transplant?!! Oh, boy!  I do know someone who had an allo transplant and the week or two before he got to go back home, he and his wife were doing all the touristy stuff in down town Seattle.  They were  having a lot of fun and enjoying themselves.  I asked them if they were afraid of getting something like the flu running around like that, but they never answered me.  They are home and doing fine as far as I know. 

 

Thanks again, Po.  And yes, I have the sanitizer in my coat pocket, in my purse and in the house!  There are times when I am too germ-phobic, but I guess it's necessary.

 

Talk to you later,

DJS

po18guy

DJS628 said:

Thanks Again

So it doesn't matter which transplant you had?  You still have to be super cautious a year out (or more)?  What if all your counts are back to normal?  Would I still be considered immunosuppressed eventhough my counts are back where they should be?

Not sure how many of the doctors or nurses told me that, too:  wear a mask and people will stay away from you, so you can't get their germs.

 

I haven't been to church yet.  Only to the hospital for my blood draws, appointments, drug store for my prescriptions, to my parents' house,  and very rarely have I stopped at a store.  I just went for a few things and made it as fast as I could.  I don't want to get paranoid about it, but...

Is it because we don't have our immunizations yet?

 

My father keeps bringing up wanting me to go on a cruise with he and my mom.  But I think it's too soon.  He's thinking in June and that would be just 5 months post-transplant.

Sorry to hear you had rhino virus that long and did get  phuemonia one time.  I've been reading posts here and there and that's what I read--people tend to get others' colds easily and it's harder to shake off and sometimes developes into pnuemonia.  I also read when they got off the acyclovir they got the shingles?!!  Eeek!

 

Someone wanted to eat sushi right after their transplant?!! Oh, boy!  I do know someone who had an allo transplant and the week or two before he got to go back home, he and his wife were doing all the touristy stuff in down town Seattle.  They were  having a lot of fun and enjoying themselves.  I asked them if they were afraid of getting something like the flu running around like that, but they never answered me.  They are home and doing fine as far as I know. 

 

Thanks again, Po.  And yes, I have the sanitizer in my coat pocket, in my purse and in the house!  There are times when I am too germ-phobic, but I guess it's necessary.

 

Talk to you later,

DJS

A cruise?

Our immune systems were essentially killed off in preparation for transplant. Thus, we are susceptible to any and every bacteria, virus and fungus that comes along, including those which occur naturally in our bodies but are normally kept in check by our immune systems. As well, there are innumerable pathogens which have yet to be identified. We have the immune system of a baby - but lacking the immune factors that a baby receives from its mother during breast feeding. We have no immunizations. We are an infection magnet, with little or no defense. Our blood counts may be normal, but those white blood cells are those of a newborn baby, and not mature enough to function as our adult white cells did. They are babies entering battle against adult pathogens.

Now, as to a cruise, those ships are known to harbor a veritable plethora of bacteria and viruses. Many healthy tourists have succumbed to them over recent decades. Personally, I would put this off until and unless doctor specifically allows it. You do not need a tragedy at sea, with your parents as eyewitnesses. 2¢ worth of opinion there.

DJS628

To Cruise or Not to Cruise...

So even if our counts are within normal limits, our immune system isn't "normal" and can't fight infection like before.  Someone explained it similarly, that our immune systems are like a baby's.  But I had someone respond back "but you don't keep a baby confined in the home for a year or more." 

I've heard of a lot of stories where people end up sick on a cruise (and/or dying).  These people didn't have a stem cell transplant that we know of, so just knowing it can happen to healthy people make me reluctant to go on one.  We were taught while in Seattle about being careful, sanitize, stay away from crowds, children, be safe about foods, etc., etc.  But I asked my oncologist here in town in he'd go on a cruise if he were me.  He didn't hesitate and said "yes."  I asked again, if he wouldn't be afraid of getting sick.  He said he would want to go out and enjoy life.  I didn't ask him specifically if he'd go 5 mos post-transplant, however.  When I see him Tuesday (I go in for labs again then), I'll have to ask him again. 

As an after-thought, I couldn't help but wonder if he was telling me to go and enjoy life before the cancer came back. 

 

I asked the long-term care team earlier and wasn't given a clear-cut answer.  First, I asked them if I should attend a  high school graduation in June (I know, I know.....stay away from crowds, kids and schools!).  I was told I could go, but may want to get there early before the crowd gets there, leave early, don't give any contratulatory hugs to the graduates.  What would the point of going be, then?  So after asking about the graduation, that is when I asked about the cruise.  They said I could go, but I would be putting myself at risk of a lot of infections and refer to my earlier question about the graduation.  This was in an email, by the way.

Like I said earlier, a lot of the information given sometimes were mainly about the allo transplants.  But since we both have new immune systems, we all have to be careful .  And having no immunizations......we are more prone to things.  Eeek!  I was told I'd get some of my shots one year post-transplant.  Then two years post, I could get my live vaccinations.  So we do have to be careful longer than a year.

 

Thank you for explaining it as you did.  We ARE infection magnets......eeeeek!  Thanks for your 2-cents' worth of opinion, though considering the cost of a life and inflation, I think it's worth so much more!  And no, my parents don't need to be eye witnesses of me getting sick and/or dying at sea!  My mom is agreeing with me that we should wait on such a trip.

 

You mentioned you used to encourage prisoners before you got cancer.  Were you a chaplan or?

 

You do a very nice job of explaining things on here (and have a way with words!).  Glad you're on here!

 

Talk to you later,

 

DJS

catwink22

8 months post transplant

I was originally diagnosed with NON-Hodgkins Follicular in 2009. I had Immuno-therapy (Rituxin only) for 2 years and was NED until Feb 2016. 

In Feb I started having hip pain and was told it was muscle spasms - SO WRONG.  I had an MRI, PET, CT scan & biopsy in December 2016 and was diagnosed with HODGKINS (WHAT??) Large B Cell with a mutation (is that considered recurring?).  I was whisked into Hyper-CVAD chemo for 6 cycles consisting of 2 treatments each cycle. I felt amazingly good throughout the chemo and often joked were they sure it was working? 

In July 2017 I had auto (my own cells) stem cell transplant at Dana Farber in Boston, prisoner for 18 days (which was record short I was told) and 2 months of quarantine.  I still have some restrictions for a year (no sushi, raw honey or buffets).

My last scan in Oct was clear and my next scan is scheduled for tomorrow.

I am currently back to work 3 days a week and feeling mostly tired, and it's amazing what changes in 14 months. 

Hopefully the good trend continues.

**DJS  -  If you decided to go on the cruise, wear a mask & gloves!  At least in contained areas where there are lots of people. Carry hand sanitizer if they will allow you to bring it. And most importantly DON'T eat from the buffets or have well drinks (bottled/cans only).

Evarista

The appeal of cruises...

I, too, find myself trolling the internet for a suitable cruise about once a week, but then I talk myself down.  Just google "cruises norovirus" if you find yourself unsure.  I've decided that some kind of resort experience would make more sense, given ongoing low WBC and ANC (even though I am not a transplant patient).  Something that offers easy walks/hikes, protection from the sun*, and the ability to curate my own food (no buffets!!!).  Friends are going to such a resort soon, but it's all about desert sun*, difficult hikes, and horses, so I am giving that one a pass.  This week I am looking at Lake Tahoe and the Pacific Northwest:  both relatively low elevation, well-shaded, and easy terrain.  Maybe your parents would go for something like that instead?

*No/low WBC & ANC = risk for skin cancer

DJS628

catwink22 said:

8 months post transplant

I was originally diagnosed with NON-Hodgkins Follicular in 2009. I had Immuno-therapy (Rituxin only) for 2 years and was NED until Feb 2016. 

In Feb I started having hip pain and was told it was muscle spasms - SO WRONG.  I had an MRI, PET, CT scan & biopsy in December 2016 and was diagnosed with HODGKINS (WHAT??) Large B Cell with a mutation (is that considered recurring?).  I was whisked into Hyper-CVAD chemo for 6 cycles consisting of 2 treatments each cycle. I felt amazingly good throughout the chemo and often joked were they sure it was working? 

In July 2017 I had auto (my own cells) stem cell transplant at Dana Farber in Boston, prisoner for 18 days (which was record short I was told) and 2 months of quarantine.  I still have some restrictions for a year (no sushi, raw honey or buffets).

My last scan in Oct was clear and my next scan is scheduled for tomorrow.

I am currently back to work 3 days a week and feeling mostly tired, and it's amazing what changes in 14 months. 

Hopefully the good trend continues.

**DJS  -  If you decided to go on the cruise, wear a mask & gloves!  At least in contained areas where there are lots of people. Carry hand sanitizer if they will allow you to bring it. And most importantly DON'T eat from the buffets or have well drinks (bottled/cans only).

Thanks, Catwink22

Catwink22,

 

You must like cats?!!  I had an orange tabby for 13 years.  His name was Sunny (named after the drink, Sunny D.! Ha!).

 

Thank you for writing. So you were dxed in 2009 with follicular and was in remission for 7 years?  Then you got dxed with b-cell with a mutation in 2016?  I've heard of follicular transforming to a b-cell kind.  Then you had an auto transplant last year.  You are back to work 3 days a week.  That is pretty good! 

Yeah, I was in the hospital for my transplant for 24 days.  Whoa! 

 

I like your word "quarantine."  I guess that is kind of what we experience after a transplant, huh?  And yes, we have to be careful what we eat and where at.  I asked opinions on cruises. I've never been on one and my father really wants us to go, but I don't think it's a good idea.  For one thing, I've heard many stories of people getting sick and/or dying on cruises and now that I think about it, don't they mainly feed everyone with buffets?  Oh, my!

 

Now I know where Dana Farber is.  I've seen it mentioned in other posts, but didn't know it was in Boston until now.

 

Thank you for sharing and I hope you keep up the good work!  Oh, you're going in for a scan tomorrow?  Good luck!  Sending prayers your way. I hope you are still in the clear!

 

Take Care.

DJS628

Evarista said:

The appeal of cruises...

I, too, find myself trolling the internet for a suitable cruise about once a week, but then I talk myself down.  Just google "cruises norovirus" if you find yourself unsure.  I've decided that some kind of resort experience would make more sense, given ongoing low WBC and ANC (even though I am not a transplant patient).  Something that offers easy walks/hikes, protection from the sun*, and the ability to curate my own food (no buffets!!!).  Friends are going to such a resort soon, but it's all about desert sun*, difficult hikes, and horses, so I am giving that one a pass.  This week I am looking at Lake Tahoe and the Pacific Northwest:  both relatively low elevation, well-shaded, and easy terrain.  Maybe your parents would go for something like that instead?

*No/low WBC & ANC = risk for skin cancer

Cruises

Hi Again, Evarista,

Thank you for the other suggestions!  My parents went on a few cruises with my father's parents and really enjoyed them, so wanted to do the same with me while they could still do it. 

 

I didn't know that even if our counts are good, we are still vulnerable to illnesses.  So I'm still learning on here.  I go in tomorrow for labs.  A couple weeks ago my WBC was still low, but the rest, if I remember right, was good.

My father keeps forgetting about some of my restrictions & I have to remind him.  He's been working on my garden and will say, "I'll get the row ready, then you can plant the beans" or something like that.  Then I have to tell him I can't.  We both enjoy gardening and getting to eat what we planted and grew.....it all tastes so much better than boughten veggies.  Just today, he finished turning the dirt over & there are a lot of rocks that need to be picked up (lots of rocks are found when you dig in my yard.....we can finally dig up a shovel full of dirt & not find a rock.  Four years ago, you couldn't even get the shovel very far into the dirt!)---he said I will need to come sit in a chair and pick them up soon.  I had to remind him that I couldn't "play" in the dirt.

 

I'm hoping to take care of my yard and garden next spring!

Good night!

Rocquie

Cruising

DJS. I have been on a few cruises and find them an ideal way to vacation. You have travel, all meals, lodging, entertainment in one price. I have always chosen smaller cruise ships with 1500 or fewer passengers. Some ships carry 5000 or more. I have found the ships I've been on to be immaculately clean and the food is delicious. It is not that difficult on a smaller ship to avoid crowds. The most likely place for crowds are the elevators. If you are physically able, I recommend the stairs. The ships I have been on have sweeping and beautiful staircases. If you need the elevator, use your mask.

I don't avoid the buffets but I wash my hands thoroughly before serving my plate. I also wash my hands again once my plate is on the table, before I begin to eat, after all I have used serving utensils others have handled and I don't know how clean their hands were. 

Avoid public restrooms and only use the one in your private state room. This is another advantage of a smaller ship--you are never too far from your cabin.

Some of the entertainment, auditoriums, lounges, involve crowds and I avoid those. Most ships have a casino but that is not my thing so I don't know how crowded they are. Smoking is allowed there. 

I  like to hang out on the Lido Deck, an open air deck with covered (shaded) tables for eating, playing cards, reading and enjoying a cold beverage, people watching, and staring out at the sea. There is a swimming pool and deck chairs for sunbathing. There is also entertainment. It is very exciting to hear the signals and see the ships moving in and out of the harbor, with the harbor pilots and coast guard escorts. 

There are so many things to do on a cruise including disembarking at ports of call.

If you want to go on a cruise, I recommend you do your homework. Check the ship's history and safety. Have they ever had a norovirus, if so how long has it been and what precautions they have taken.

Cruise ships have a physician, so if you do happen to get sick, you can see a doctor. 

Cheers,

Rocquie

 

DJS628

Small Cruise Ships

Thanks, Rocquie!  So there is a way of going on  a cruise & hopefully not getting sick!  Thank you for the advice.  Will have to do my home work on things.  I like the idea of a smaller ship and having your private bathroom and cabin being not too far away.  You make it all sound very inviting.  I will study things before making a decision, but I really think I should wait a while.

Thanks for writing!

 

po18guy

Listen to your mother

She will never steer you wrong. Women, mothers of the human race, are blessed with the gift of intuition. It is never wrong.

DJS628

Mothers

I love my mother!  She's great!  :-)

gbread

po18guy said:

I am realizing the purpose of my life

Whatever I have learned has been the hard way! Regarding cancer, I was totally naîve when all of this began. The learning curve has been steep and I may know a little, but there are mountains more to learn. In a former life, I used to encourage prisoners who had lost hope - but all of that was taken away when I found that first tumor. However, when God closes a door, He opens a window. Thus, it occurred to me that cancer patients are another group which in many have lost hope. My journey has been absolutely providential.

TREC is a B-Cell regimen, but for some reason, it worked fabulously on two sub-types of T-Cell Lymphoma. Like I said, providential. As to GvHD, I plan on having that for the rest of my life - it is the cost of living. My donor/son has a hyper-vigilant immune system and after 18 drugs in 9 regimens, that is precisely what I needed to eradicate those two persistent cancers. Son and daughter are the only known individuals on earth who could donate. Again, providential.

SCCA holds transplant reunions each five years, I believe. Someone there in Long-Term Follow Up may have the stats. Keep in mind that we form our own personal statistic - that is all that matters.

We have much to be thankful for this Easter weekend, and every weekend. May your weekend be blessed.  

Fighting Peripheral T-cell NHL NOS for the third time

Hi Po,

 

ive read a lot of your posts with much interest. i Am currently fighting NHL lymphoma for the 4th time. First time was in  2013, large diffuse B cell,  R-CHOP worked and I went into remission. Fast forward to 2016 and I was diagnosed with Peripheral T-cell NOS. Was treated with Foltyn. was In remission until May 2017 when t-cell came back  Treatment was ICE which was miserable, then an auto stem cell transplant which didn’t work. started chemo in March 2018 every week with Brentiximab, still going every week. Found out I have a tiny bit of b cell again so Rituxin was added. My doctor wants to do an allo stem cell transplant once the cancer is gone. I was being considered for a T-cell clinical trial but once they found the B cell they said I was no longer a candidate. So I’m really hesitant about the allo transplant, not that I really have much choice. My brother matched 9/10 and my daughter matched 5/10 but they want to use her Instead of my brother, a procedure called haploidentical transplant - is that what you had?  Is the stem cell transplant what put you in remission, or was it a combination of the clinical trial you were in and the transplant and some of the newer drugs?  how long were you in the hospital for the transplant and how long did you have to follow up at the facility?  the cancer Center I’d have to go to is 90 miles from where I live so I’d have to stay up there 3-6 months after the transplant. its awful that you have the GVHD, did they give you meds before/during the transplant to try and avoid that?  thanks so much for sharing all youve been through. It’s really hard to find someone with t-cell to talk with. 

gbread

gbread said:

Fighting Peripheral T-cell NHL NOS for the third time

Hi Po,

 

ive read a lot of your posts with much interest. i Am currently fighting NHL lymphoma for the 4th time. First time was in  2013, large diffuse B cell,  R-CHOP worked and I went into remission. Fast forward to 2016 and I was diagnosed with Peripheral T-cell NOS. Was treated with Foltyn. was In remission until May 2017 when t-cell came back  Treatment was ICE which was miserable, then an auto stem cell transplant which didn’t work. started chemo in March 2018 every week with Brentiximab, still going every week. Found out I have a tiny bit of b cell again so Rituxin was added. My doctor wants to do an allo stem cell transplant once the cancer is gone. I was being considered for a T-cell clinical trial but once they found the B cell they said I was no longer a candidate. So I’m really hesitant about the allo transplant, not that I really have much choice. My brother matched 9/10 and my daughter matched 5/10 but they want to use her Instead of my brother, a procedure called haploidentical transplant - is that what you had?  Is the stem cell transplant what put you in remission, or was it a combination of the clinical trial you were in and the transplant and some of the newer drugs?  how long were you in the hospital for the transplant and how long did you have to follow up at the facility?  the cancer Center I’d have to go to is 90 miles from where I live so I’d have to stay up there 3-6 months after the transplant. its awful that you have the GVHD, did they give you meds before/during the transplant to try and avoid that?  thanks so much for sharing all youve been through. It’s really hard to find someone with t-cell to talk with. 

Sorry DJ didn’t mean to hijack your thread

i started my own thread. I dont know if I can delets my post on your thread but if there’s a way I’d be happy to do it. New on here so don’t know.