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

DJS628
Posts: 48
Joined: Mar 2018

Hello All,

I am new on here.  I was dxed with Diffuse Large B-Cell Lymphoma in Sept. 2015, stage 1.  I responded very well with R-Chop chemo treatment (3 of them, 21 days apart).  I was surprised that the size of my lump shrunk in half just a few days after the first treatment.  After the chemo, I had 15 radiation treatments in Jan. 2016.  I was in complete remission!

I was stage 1--why did it come back?!!!  No one told me it would more than likely come back.  I thought only if you were at a later stage, you had a bigger chance of that happening?

I was in remission for two months shy of two years.  It was quite a shock to find out it came back!  My original diagnosis was found in my inguinal lymph node on the right side of the body.  I was feeling great and ready to live again (last spring/summer)!  Then I went to a regular appointment with my primary physician in July of 2017 (last summer).  The doctor asked me how I was doing & I told her I felt really good.  She checked my lymph nodes in my neck, then armpits, then went to my left inguinal lymph nodes.  She kept poking, prodding, touching, etc., etc., when I finally said, "Uh....it was on the other side!"  She hesitated a second or two, then said, "You're going to hate me, but how long has this side been swollen?"  I had no idea!  I wonder how often lymphoma may do that (be in one side, then the oppocite side the next time)?

Again, it was only found in the lymph nodes, limited disease.  They wouldn't tell me a stage?  Besides it being on the oppocite side, the other difference was that three nodes were affected this time.  I had an excisional biopsy this time; they took out two of the larger nodes.  All tests pointed to Recurrent Diffuse Large B Cell Lymphoma.  Again, not in any other place (ie: not in bone marrow, etc.).  Both times, it was caught in the early stages.  It also had something about "of germinal ?) which I was told had a better prognosis.

I again had three treatments of R-Chop (no radiation this time).  Then I was referred to Seattle Cancer Care Alliance where they gave me intensive chemo therapy for 6 days in the hospital, then I had an autologous stem cell transplant.  I was in the hospital for 24 days!  I was there for my first appointment on Nov. 27th and finally came home on Feb. 3rd.

I'd like to hear from others who have had a recurrence.  I know everyone is different, treatment may be different, and the way our bodies react to the treatment can be different.  I can't find much information on-line about people who have had a recurrence, then a transplant.  It helps to share our experiences with each other and give each other support.  I joined a cancer support group in my town and it has been a very good experience.  We are like family now.  I've been going to it since my first diagnosis in 2015.

Please share your experiences with me.

Thank You,

DJS628

po18guy
Posts: 1010
Joined: Nov 2011

I had an allo transplant at SCCA after my second relapse. FYI, there is a dedicated transplant forum at www.cancerforums.net

DJS628
Posts: 48
Joined: Mar 2018

Hi Po,

 

Thank you!  So more transplant patients may reply over there than  here?

 

How was your experience at SCCA?  They took good care of me.  I'm still in remission and hope to be declared cured, of course.  You said you had a transplant (allo) after your second relapse.  How many relapses have you had and how long has it been since your transplant?  I hope you are doing well now?

---DJS628

po18guy
Posts: 1010
Joined: Nov 2011

I relapsed immediatly after primary therapy, when 2 regimens involving 8 drugs were used against the lymphoma. I went into a clinical trial and was in full response for 4 1/2 years. However, it relapsed again while in maintenance treatment (Romidepsin), and mutated into two separate sub-types (PTCL-NOS and AITL), only one of which would respond to treatment. At the same time, I developed MDS, a bone marrow cancer, from all of the treatment and/or radiation from scanning. The two lymphomas defeated three new single-agent drugs. A miracle regimen (TREC) placed me in full response once again and I was then nuked for the transplant. In July it will be 3 years. I have received no treatment for lymphoma and there is no sign of it. The MDS was apparently eliminated by my donor's transplanted immune system. I am dealing with chronic Graft-Versus-Host-Disease and am now in my second clinical trial attempting to control it. It is mostly centered in my skin, but life is still worth living!

DJS628
Posts: 48
Joined: Mar 2018

Po,

You sure have been "through the wringer."  Some where, I read your whole cancer journey.  I admire your strength and attitude through it all.  I see you post quite a bit on here and on the other forum, too.  You seem very knowledgable about this cancer stuff.  I'm glad you're on these forums sharing that knowledge and helping others out.

Very glad the TREC helped get you back in remission.  Also nice to know someone else who has had a transplant (& at the SCCA as I have!).

Sorry to hear you are still dealing with the graft versus host thing.  How long might that last?

Are there any long-term studies on people who have had transplant?  All I can find are stats on survival rates of different cancers, but nothing on transplants?  Don't you love that "magical" 5 year mark?  Goodness, you were in remission for 4 1/2 years after a clinical trial, then it came back?  I would be thinking I was cured.  It shouldn't have come back. :-(

It's been 3 years since your transplant and still NED.  Keep it up!

Have a nice easter weekend!

po18guy
Posts: 1010
Joined: Nov 2011

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.  

DJS628
Posts: 48
Joined: Mar 2018

Hi Po18guy,

Yes, I believe God isn't done with you just yet!  That is why you are still around and able to support people on  here.  Keep up the great attitude!  Bless your son and daughter!  To be able to say "I saved Dad's life" is grand!

 

I hope to be at the SCCA reunion!  Hope to see you there, too!

 

They told me the stats (not long-term ones, though), but added that being younger, being caught at an earlier stage than most, and having my cancer respond well to chemo, hopefully, I will beat the stats.  There are so many variables, nobody knows what may happen; there is always hope, so don't give up no matter what!

 

Have a great weekend!

 

gbread's picture
gbread
Posts: 13
Joined: May 2018

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's picture
gbread
Posts: 13
Joined: May 2018

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. 

Sal0101's picture
Sal0101
Posts: 125
Joined: Sep 2015

Hello DJS628,

Your story sounds very similar to mine.  I was diagnosed with DLBCL stage IV in August of 2015. Had my first R-Chop in Sept. 2015.  the Tumor in my breast dissolved within weeks.  My Lymphoma was widespread from my left breast diagonal to my liver.  I was in full remission for a short 5 months when a routine CT showed a spot on my right lung. I had 3 RICE treatments in July 2016, intensive chemo with BEAM and an autogolous stem cell transplant in September 2016. I was in the hospital 18 days, home for 2 and then back due to fever for another 5 days. My oncologist always asks me if I do my breast exams on a regular basis and then of course I follow it up with, “as long as it can show up anywhere what’s the sense”? She just laughs because she knows I’m right. 

 I’ve been in remission since, but scared everyday.  I’ve had my share of issues since the transplant, but am happy none have been Lymphoma and keep my fingers crossed everyday that it never comes back, however something in me stays skeptical. 

Sharon

DJS628
Posts: 48
Joined: Mar 2018

Hi Sal (or Sharon?),

So your treatment was similar to me and the dates are about the same, too.  I didn't know you can have lymphoma in the breast?  I am so sorry you were only in remission for 5 months.  No one told me lymphomas tend to come back until after my recurrence.  I can't remember who they were now, but I had 3 people tell me something like "lymphomas like to come back."  I had stage 1, so I really thought I was in the clear. Especially since the chemo took care of it right away.

 

So you've been in remission for 2 years since transplant, right?  How do you feel?  How often do they have you come in for re-checks?  I'm going in every 2 weeks yet for blood work.  I had another pet scan earlier in the month, which showed I was still in remission.  They want me to get a pet scan every 6 months for the first two years.

 

I hate that anticipation before a follow-up appointment.  But we need to try not to live in fear.  If we're always scared, how are we really living?  Trying to live one day at a time.

Have a nice easter weekend!

 

DJS

Sal0101's picture
Sal0101
Posts: 125
Joined: Sep 2015

DJS, 

I haven’t had a PET scan in quite some time, but have CT scans every 3 months.  If my next one in June ( fingers crossed) is clear, then it will be changed to every 6 months.  I recently had my port removed mainly because my son is getting married in August and if need be I know I can have it put back in. Hopefully that never happens. 

Ive had my ups and downs.  Lung issues that they thought was from one of the chemo drugs.   High dose Prednisone cleared that up.  Pneumonia X2 and  it Seems my bowels and stomach have never completely gotten back to normal and I continue to have issues with that, but because it’s only every few weeks, and my CTs are clear  they aren’t doing much yet.  I’m thinking IBS type issues. I might have to be more whiny eventually.

I just got over a bout of shingles and the meds really played with my system so I’m dealing with that.  Besides that, NO sign of Lymphoma and my blood work is good! 

And yes, the anticipation is awful.  I try not to live in fear, but every ache, pain and odd symptom makes me think!  I’m Sure that will change once I have a good long stretch of nothing else popping up. 

Sharon

DJS628
Posts: 48
Joined: Mar 2018

Hi Sharon,

My sister's name is Sharon, too.  Only her name is spelled Sheiron (our grandpa got to name her since she was the first granddaughter born!).

I was reading some posts some where and several others said they got shingles when they quit taking the acyclovir (if I spelled that right).  I hope I don't  get them!  I had chicken pox and the mumps when I was little.

You also got pnuemonia twice?!!  Why is that?  Were you exposed to the flu or someone's cold and it kept getting worse, then turned into pneumonia?

 

I am wondering how long I have to be careful about germs.  How long did they tell you to wait before you could go out to eat, mingle with people, take trips?  Also, do we really have to wait a whole year before we can clean house and do yard work?  I have been sticking close to home, mainly to stay away from the flu bug so far.  But I'm getting bored!

 

You said you have ct scans every 3 months.   They want me to have a pet scan every 6 months until year 2 post-transplant, then once a year until that "magical"  year 5.

Sorry to hear you're having problems with your bowels and stomach.  You will have to see if it's tied to what you have been eating? Or it could be the meds for the shingles?  I hope that resolves soon. 

 

 

Take care and thank you for writing back.

 

---DJS

 

Sorry to hear you're having problems with your bowels and stomach.  You will have to see if it's tied to what you have been eating? Or it could be the meds for the shingles?  I hope that resolves soon. 

 

toledotom's picture
toledotom
Posts: 11
Joined: Nov 2011

Looking up info for a friend of mine iwho s up in the Medical College of Michigan in Ann Arbor, MI receiving his stem cells. He will be there at least 3weeks.

I don't know much about this protocol so I am reading trying to Understand what Jim is going thru? I am a Cancer Surviovor out 5 years from Stage 2 Non-Hodgkin's

Lymphoma wrapped around my Colon from my Ilieum to my Secum. 3 bad infections and 6 surgeries with an Ilieum Bag for 9 monthes and a resection later in 2012. 

R-CHOP regiment No radiation. too mant surgeries they said! Been down in the dumps lately, depression and have not been feeling well...I am 62 and going to be 63 in a few months.

Body took a big hit with the Chemo..feel aged 10 years. No stamina after doing just menial chores!

DJS628
Posts: 48
Joined: Mar 2018

Hi Toledotom,

 

Glad to hear you've been in remission for 5 years!  Not glad to hear you're down in the dumps with depression.  Cancer can do that to you, but you've been in remission for 5 years!  That is great! Try to be happy!  Do things you enjoy. You could ask your local hospital if there is a cancer support group there.  I joined one here and it has helped me greatly.  The small group I'm in are like family now.

 

I'm new on these forums. I did make a signature at the bottom of my post, so you can read my journey.  Just had my stem cell transplant Jan. 3rd and 4th.  I'm starting to feel back to  "normal" again, slowly regaining my strength.  But those transplants are really hard on you.  I tell people it wasn't a "piece of cake," but I also know it could have been worse.  I met so many who had it worse than I did.  They had worse side effects that lasted longer, too.  Or they had complications and ended up in the hospital a lot longer than I did.

 

Do you wnow what kind of transplant Jim will have? There are two kinds:  auto (his own blood, if we're talking stem cells) and allo (a donor's blood).  The allo takes longer to recover or they keep you longer since you have the risk of having your body rejecting the donor's cells.  Since I had the auto, I can't really say much about the allo.

 

If Jim's having an auto stem cell transplant, they will want him to be in remission before starting.  Some go ahead without being in remission, but I don't know how well they do?  If in remission, they will give him growth factor shots (they cause his stem cells from the bone marrow to flow into the blood stream).  When his body is ready, they will remove his stem cells like they do a transfusion.  Mine took two days to get enough.  Then they will freeze the stem cells, and get him ready for intensive chemotherapy.  I had chemotherapy in the hospital over 6 days.  I had a day of rest aftewards, then the following two days, they put my stem cells back in me.  Your body slowly grafts...re-builds everything...white blood cells, red blood cells, neutrophils, etc.  I think they said on average, it takes maybe 7-12 days? I could have that wrong.  I know I am giving you a simplistic over-view of it.  Someone else will come on here and give you more specifics.  I was in the hospital a total of 24 days.  Two weeks after that, I got to go back home.  I had my transplant out of town, so had to rent a place before and after my hospital stay. Some people will take up to four months to be done with treatment.  I was there from Nov. 27th to Feb. 2nd.

 

I wish your friend & yourself well.  I'm sure your friend is glad you are there to support him.  Eventhough you didn't go through a transplant, you've gone through having cancer and chemo, so have "been there."  It helps to share experiences and support each other.

 

Please let your primary doctor know of your symptoms.  How often do you still see your oncologist? Let him/her know, too.   They can help you get going again.  I had to learn to pace myself after my chemo treatments.

 

Best wishes,

 

DJS

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3325
Joined: May 2012

Tom,

A friend of mine two years ago had a cancer that, while not lymphoma, sounded very similiar to what you described regarding your own fight.

She was diagnosed with Stage IV peritoneal cancer, highly advanced.  Peritoneal cancer is mostly found in women, since the key cell involved is idential to that of the ovaries, and in women the disease if often first diagnosed as metastatic ovarian cancer.  Her treatment was medieval, brutal.  First, a radiacal hysterectomy -- everything removed. Then, exploratory surgery throughout all regions of the abdomen. Every organ was searched and moved around, looking for tumors, and all visual evidence of disease cut out. Greusome.  Associated with this was severe application of chemo. (The term "hot chemo" [HIPEC] is mostly associated with peritoneal cancer.)  Her chemo was not the "hot" variety, in which raw chemo is literally poured directly through incisions into the abdomen, but close.  Rough stuff !

Statistically, her situation has about a 25% survival rate at 5 years.  Two years since treatment, she is active and doing well.

The band 10 cc had a hit in the late 80s -- The Things We Do for Love.  The things we do to survive is far crazier. I hope you and your friend well,

max

po18guy
Posts: 1010
Joined: Nov 2011

Everyone deals with cancer and transplants differently. I mumble and grumble about chronic GvHD, but again, I am alive to mumble and grumble. Overall, I tell folks that I am delighted to be anywhere. Among the many game changers, the many life changers, cancer is certainly up there. However, the way in which we deal with it - looking always forward and never back, I have found to be helpful. We can wax melancholy about our former lives, but so do healthy people! Choosing to take the right here and right now and do our best with it I have found to be the most efficacious.

As to precautions post-transplant, I am approaching three years and as long as I am immune suppressed, I wear a mask and gloves when in close proximity to others. Do I look like the freak? Maybe, but then again, those with colds and flu tend to avoid me as they think I may have something even worse! OK by me. Somehow, I have avoided C-Diff, MRSA, CMV, Shingles and all the rest. No idea how, but still being without my "baby shots", I am subject to measles, mumps, rubella, polio, you name it. So, I take care, and I hope that all of you do, as well. 

ShadyGuy
Posts: 427
Joined: Jan 2017

I just had my first 4-day chemo session last week and already my counts are down and I have a bad cold. I asked about masks and was told  to not get too hung up on masks. They are not routinely advised to be used by patients receiving chemo as nearly all infections arise from within your own body from already “resident” germs!”. Told to avoid hugging, shaking hands and keep hands very sterile and away from mouth, nose and eyes where most all germs enter the body.  Very curious as to what other clinics are saying and would appreciate any info or insights you may share.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3325
Joined: May 2012

Shady, as I have written here before, I regard my hematologist as a genuis in the most literal sense.  Ivy trained at all levels of his medical career, and yet easy to communicate with, affable.

My cancer center, part of a teaching hospital, has no standardized policy regarding patient masks.  Despite me being profoundly ill, a mask was never recommended to me, but available for the asking.  My wife asked him one day in front of me, "What can we do for him since he has a weakened immune system?"  His response was, " 'Immune system strength' is in effect the same thing as WBC count. Since his WBC count is normal, so is his ability to fight infection."

I have quoted that before, and got a lot of responses, techincal stuff about the weakening of bone marrow, and other facts. I do not argue any of this. The doctor was making a general statement to assure my wife; he was not giving an academic paper on the the boiphysiology of lymphoma or chemotherapy.

So my takeaway was to do the common sense things you described. I would prioritize avoiding people generally, especially young kids, or anyone with any trace of sickness. I myself would never go to, say, a mall, but I won't go to a mall when well.

max

Evarista
Posts: 268
Joined: May 2017

Hi Shady, hope all is going well.  At my (NCI) clinic, us run-of-mill folks with hematologic malignancies share a closed waiting room with those who have undergone a BMT.  There is a mask and hand-sanitation station at the door and everyone entering must mask. Once we are back in the clinic area, we are permitted to unmask.

As for hygeine throughout, I was pretty obsessive: I only ate food that was prepackaged or prepared by myself/my husband. I followed all the Do's & Don'ts on the food list that my clinic gave me.  Nuked the heck out of frozen meals, only fruits/veges that could be washed & peeled.  No eating out. Didn't pet the dog, didn't swim in the community pool. Once my counts rose towards the normal zone, I would eat out, but only if food was cooked.  I still do not eat salads anywhere except at home and I avoid foods with a history of Listeria, E. coli, etc. recalls (Cry because I love Sabra hummus). I avoided crowds and still do.  If I want to go to the movies, I take wetwipes for the seat arms and I go at 11 AM on Tuesday instead of 1 PM on Saturday. That way I get an almost empty theater. Except for once, when the local elementary school was on a field trip and I was engulfed with hundreds of 8 years olds!  Yikes!  But, like Max, I always carry a mask and put it on if I find myself in an overcrowded space.  Agree that it is not likely to offer much protection, but it does tend to encourage others keep some distance.  Useful for airports, etc. At the gym, I cleanse hands between each piece of equipment and make a point of not touching my face (nose, mouth).

I found the most trying aspect was friends and family with small children.  I had to be very firm to combat the phenomenon of "I knew he had a cold, but I brought him anyway because I didn't want him to miss out".  And they won't remember to tell you that they've just taken their youngster to get an MMR live virus vaccine, no matter how many times you remind them that this is really important for you to know.  So, I had to just be very proactive in dealing with the under-5's.  Fortunately, the assisted living facility for our seniors was just the opposite, letting us know when there was flu, etc.

My counts hover just below 4.0, so I continue to be vigilant.  Two colds but no flu, so counting myself lucky.  Hang in there and be well.

ShadyGuy
Posts: 427
Joined: Jan 2017

My white count was 3.6 going into this and is now under 3.0. However other than the cold symptoms and fatigue I am doing well.

DJS628
Posts: 48
Joined: Mar 2018

Hello,

 

Thank you for sharing.  I am now 3 months post-transplant and still being very careful regarding germs, flu, etc.  I haven't been going to the stores or eating out.  But I am getting bored staying home all the time!  I do get out for walks, but....   

 

My WBC was 3.4 a couple weeks ago.  I'll get checked next Tuesday again.  I'd like to know how long people wait before they venture out and do other things.  Do we really have to wait a whole year before being able to clean our house and do yard work for that length of time?  Or does it depend on our counts and how we feel and etc.?  Let me know what you think or what you've been told.

Thank You!

 

---DJS

P.S.

I wasn't notified via email that I had responses to my post?

po18guy
Posts: 1010
Joined: Nov 2011

If you glove and mask up, you can start doing things with at least some level of assurance. In any event, you will tire out before you get all that much work done. Normal. Good, as you will then take the rest/naps that you need. Still, follow what doctor recommends.

DJS628
Posts: 48
Joined: Mar 2018

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
Posts: 1010
Joined: Nov 2011

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
Posts: 48
Joined: Mar 2018

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
Posts: 1010
Joined: Nov 2011

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
Posts: 48
Joined: Mar 2018

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's picture
catwink22
Posts: 280
Joined: Sep 2009

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).

DJS628
Posts: 48
Joined: Mar 2018

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.

Evarista
Posts: 268
Joined: May 2017

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
Posts: 48
Joined: Mar 2018

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's picture
Rocquie
Posts: 836
Joined: Mar 2013

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
Posts: 48
Joined: Mar 2018

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
Posts: 1010
Joined: Nov 2011

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

DJS628
Posts: 48
Joined: Mar 2018

I love my mother!  She's great!  :-)

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