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Newly Diagnosed Mantle Cell

JoeCostello
Posts: 19
Joined: Apr 2015

Hello all. I was just diagnosed Friday with Mantle Cell Lymphoma. I am scared beyond belief. I am 57 years old and have been very healthy all my life. About 2 months ago a Dr found a left supra clavicular lymph node swollen, not painful and very moveable. I thought it was nothing but from my wifes urging I went to my family Dr. He thought it may be a lipoma but since it was located where it was he said it should be biopsied.  The surgeon removed it and one week later I find out that I have this disease. I dont have any symptoms that I am aware of other than being tired a lot. I have been that way for years, never thought much about it. Just getting old you know. I have been reading some of your posts here and you folks seem like you are very compasionate and knowlegdable. I really need some encouragement right now. I have a wonderful wife and four kids that will give me all the support that they can.

Jeff148's picture
Jeff148
Posts: 184
Joined: Apr 2014

While being on this site usually isn't due to good circumstances, I found it helpful as I went through my war last summer. Just need to geer up mentally for the battle ahead. I am a man of prayer so if you want some prayers, let me know. I had a differnet form of lymphoma, but those on this site with the type you have will usually chime in a give good info. I found that miralax and antacids were my best friend to keep me feeling as good as could be considering the nasty chemo. Don't wait till you have bad side affects.

Jeff

JoeCostello
Posts: 19
Joined: Apr 2015

Thank you Jeff. I have been reading a lot of encouraging comments from 2-3 years back. I would appreciate the prayers and I will pray for you too. I have a very supportive wife, family and church. I think I mentioned I am scared.  I have never even spent a night in a hospital before except being with my wife for several surgeries. I will remember to take the miralax and antacids with me. I guess I will be scheduled for the the PET Scan, colonoscopy and bone marrow aspiration next week. I meet with an oncologist for the first time Monday. 

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

I am sorry to learn your news, with much regret I am very new to this site too.  One year ago I was diagnosised with folicular NHL stage IV incurable.  Three weeks later my Father was diagnosis with Mantel Cell.  I have been hiding this from my family so I don't creat more stress and havoc in my family.  I have to support my father with all I have and beat this on my own.  You have a right to be afraid, it's terrifying to say the least.  That said, you just might surprise yourself and find a strength you never had and look at fear and stare it down.  Try to breath, meditate and stay as clam as can be.  I fear stress feeds the monster I call cancer.  My father was dreadfully ill, immediately went into treatment.  I wish he got a second opinion.  He is alive and well but could be better.  There is much to digest in the coming minutes, days and weeks.  Get yourself the best team of trusted doctors, ask questions and you'll know what to do from there.  Like you I was never ill, super healthy all my life.  Do yourself a favor, kick cancer where the sun don't shine!

God Bess and prayers are coming your way!

JoeCostello
Posts: 19
Joined: Apr 2015

for your reply. I'm sorry to hear that you also have an incurable cancer. I hope its at least treatable. You have really been through the ringer with yourself and your Dad. It is terrifying like you said. Its late and I have to be up early so again thank you and I wish you the best. I will be praying for you all as well.

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

Mine is very treatable and cancer never met the likes of me before!

Everything right now is overwhelming for you and your family.  Try to take a step back and relax a bit, feel your faith and you know you're not alone.  I wish I was better to myself in the beginning.  I went into warrior mode for my husband, two children and my parents.  What helped me was meditation, I had to google it for I had no idea how to do it but I was at a breaking point.  It worked and in minutes I felt better.  Music, laughter (yes you will laugh again I promise) yoga and the littlest of things that give you pleasure....... indulge.  Be good to yourself, take a deep breath and exhale.  

Oddly my best friends are oncologists (Or perhaps that was Gods plan all along).  My girlfriend is a specialist in prediatric brain tumors and her husband is my oncologist (MD-PhD, hemolologist) along with another from Dana Farber.  The reason I told you this is they have been with me every ugly minute and gave me advise that at the time I wasn't sure of but really helped.  This horrible journey your on at the moment will be more manageable when you decide what treatment you will take.  I looked at my girlfriend when she told me that as if she had two heads but she was right and my fear turned into Fight.

 

Hang in there!

JoeCostello
Posts: 19
Joined: Apr 2015

Everything is very overwhelming. I am still in shock that my life has just turned upside down. I have been praying a whole lot more than what I used to and those prayers are definitely more fervant. You seem as though you have a great support system around you. I too am blessed to have my family. I have a wonderful wife and 4 children. Thankfully the youngest is 21 years old and only one of the 4 is still dependent on me. We have a dear friend that is a Nurse Practioner and is urging me to go to MD Anderson in Houston for a workup. I understand that they will work with my local oncologist to work out a treatment protocol. I would not have a clue about this sort of stuff without her. I just got back from having a PET scan and I'm a little tired emotionally from all of this so I think I'm going to take your advise and try to relax a little and then go ride a horse this evening. Thank you again for your encouagement. I am definitely in need of hope.

Joe

 

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

MD Anderson is wonderful advise and I couldn't agree more!  GO!!!!

Breathe one breath at a time and enjoy all that makes you happy!

khdh2015's picture
khdh2015
Posts: 11
Joined: Mar 2015

You and my husband sound like you have close to the same story! He was never sick and maybe went to the Dr. about 5 times in his life. He had swelling on the side of his face that never went down, so I made him an appointment to see the Dr. Never any other symptons but tired and ached, but thought that was part of getting old. He had a biopsy and we found out on Feb. 4th he had Mantle Cell Lymphoma...from there he had the Pet Scan, Bone Marrow Biopsy and it was staged at 4. He is now a patient at the Cancer Treatment Center of America and is undergoing Chemo...I sent you a private message back...please check it and I think you and my husband could really be encouraging to each other through this journey. Prayers to you and your family!

Dianna2013's picture
Dianna2013
Posts: 15
Joined: Nov 2014

I forgot to tell you, I didn't know either. I went to the doctor for simple wax removal & she felt a very small lump on my throat. I had to feel around to find it afterwards. She ordered an ultra sound the same day. Within about a month, it was very visable, almost the size of an egg. Mantle Cell is caught at stage 4 as there are no symptoms. Had a pet scan a week later and my whole body was full of tumors. Started chemo....still here. :-) I live near Cleveland and I'm getting care through the Cleveland Clinic.

Dianna

Dianna2013's picture
Dianna2013
Posts: 15
Joined: Nov 2014

Hi Joe,

I'm Dianna, I was diagnosed in 2013 with Mantle Cell. I too was scared and after researching it thhought I was handed the worse. Yes, Mantle Cell Lymphoma is very very rare, usually a (man's cancer) but I got it. One month before my 57th birthday. I'm also a quadriplegic resulting from a boating accident 25 yrs ago. I'm in remission, 2 yrs now. My story is : I went through chemo, R-Chop, and was to follow with a bone marrow transplant. After having several set backs from chemo, my white blood count was very low, hospitlized for that and cardiac toxiy, I was no longer a canadiate for the transplant. My Doctor said that Rituxan treatments would be just as effective as the transplant. They said I wouldn't survive the transplant. Don't let me scare you about the chemo, everyone is different. I never got sick, just very tired. Lost my hair of course, (that was the worse). Heart toxity, I didn't even know it was happening during chemo treatment. My body is sensitive from medicine. Plus being a Quad for 25 yrs, heart and lungs aren't as strong as an abled-body persons. My point on this is Chemo wasn't that bad. I now have a cat scan every 6 mos and a Rituxan every 3 mos, a total of 8. I have 2 more to go. Rituxan is given intravounsly...takes about 2-3 hrs. Usually no side effects.  There is a pill that was released in 2014 for when and IF we relapse. There is hope and there is much research being done on Mantle Cell.  I have much hope on the prognosis we study. I have  wonderful support from my family. I have a 12 yr old granddaughter who just lightens my world and keeps me going. Of course she's in to 1Direction, she's the future wife of Harry Styles :-)  comes over often and we "rock out" I live for her and continue to do so!! There is a woman on this list, you'll hear from shortly, she manages our Mantle Cell forum. Her husband has Mantle Cell and I have to say, much educated on the subject. I didn't mean to ramble on, just try to give comfort and hope. We will overcome this, enjoy your life and try not to worry!

Dianna

JoeCostello
Posts: 19
Joined: Apr 2015

I appreciate you getting back with me. I am still going through the staging process, CT Scan and blood work yesterday, PET Scan today, tommorrow a bone marrow aspiration. I am trying to prepare myself for stage IV. Hoping for better but like you said it is usually IV. I am thankful that they do have these newer drugs e.g. Rituxan to combat this. I have started praying for the researchers that God would give them insight into this and other cancers. I wish you the best on your remission and will pray for you that it lasts. 

Joe

illead's picture
illead
Posts: 874
Joined: Aug 2012

I just wanted to say that I have private messaged Joe.  We were on a little trip and although I saw that he wrote I was unable to answer, which was distressing but I finally got back to him today.  As we told you Joe, we know things will be better than what they seem and we are here for you as is everyone on the forum.  I will get back to you tomorrow.

  Thinking of you and your family, hang in there,

Bill & Becky

JoeCostello
Posts: 19
Joined: Apr 2015

I just want to take a minute to tell all of you that have responded how much I appreciate your support. This week has been, as you know, a very stressful and life changing week. I am slowly coming to grips with this and am ready to fight. I know that there are some very trying days ahead and am not looking forward to it, but none the less want to kick this thing down. We are still working through the process of staging and treatment options. I am somehat more optimistic about this than I was. Still scared but I have my family and friends behind me so a good local support system too. 

May God Bless you all today,

 

Joe

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

I chose a beautiful winding road as my profile picture because it represents the journey.  This road is horrific but not every step is a bad one.  There are very beautiful paths here too.

God Bless You and your family.  Be good to yourself and have a peaceful day.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3661
Joined: May 2012

Joe,

Dum Spiro spero -- the state of motto of SC, your state and mine.  "Whilst I breath, I hope."

Was there ever a nobler statement of resolve and determination ?  A lung specialist told my mother, in 1986, that I had "maybe 30 minutes to live," due to a collapsed lung, which had filled with blood clots. He also believed I was getting pneumonia, but it was just bruising.  The immediate cause of concern was that my heart rate was out of control, and they ran a Swan-Ganz catheter into the heart right then.  

I then went on a respirator for 16 days.  A day later, we were told I had liver failure, and I turned pumpkin-colored.  Mother wiped my forehead with a white tissue a day later, due to fever, and the sweat was bright yellow -- she showed it to me.  After two months, I was out of the hospital.   I looked like one of the few people who were liberated from Auschwitz.  Too weak to hold my head up, it stayed flopped over on my shoulder.  Two years later, I could walk unassistted.

For that reason, breathing reminds us of life, that there is always a fight left, so long as we breath. May your road be easier than you suspect it might be. 

max

2009, HL, Stage III-A.  2015, Prostate Cancer, Stage t2An0m0

Today, very well. Pushed mowed nearly an acre of grass this week....

 

JoeCostello
Posts: 19
Joined: Apr 2015

I like that Max. While I breath, I hope. I am not a native South Carolinian but I think I will carry that mantra with me. Since I am not from here I always tell people I may not have been born here but I got here as soon as I could. I have lived here for 35 years and love this state.

Max you sound like you have been run through the ringer more than one time in your life and you keep on kicking. I hope I can have your resolve when the rubber meets the road.

I have had a reprieve the latter part of this week from a lot of the stress. My youngest son came home from college and another son and his wife came down from Maryland to see me. Our other two children live here and we have had a nice time together.

I had a bone marrow aspiration today (not as bad as I thought) and a talk with the oncologist. He was trying to be encouraging about my condition. He has assured me it is treatable and we will kick it into remission.

Thanks to Becky for answering my questions.

 

While I breath, I hope.

Joe

 

lindary's picture
lindary
Posts: 709
Joined: Mar 2015

So much has to do with attitude. I am basically a positive attitude person. It's not that I don't have negative thoughts. I tend to turn them into positive actions whenever I can. I can't wave a magic wand and make this go away. So I do want I can to make my life pleasant. For me that includes working and spending time with family & friends whenever I can. When I can't I live on the computer to talk to them. My hobbies are reading and the computer. (I am a geek.) Now that it is getting warmer out I am looking forward to cookouts.

Also as you get more info, research. There are many good cancer sites. Don't let the depressing ones scare you. I read those to see why they are such downers. Often they are older posts and treatments have changes since then. So plan for tomorrow.

JoeCostello
Posts: 19
Joined: Apr 2015

My oncologist said they same thing yesterday. Its the space between the ears that makes a huge difference. Yes I have started avoiding the older negative sites as they arie depressing. I am thankful for the researchers that are making progress in fighting these types of cancers.

While I breath, I hope. (I fight too Max)

 

Joe

willow55
Posts: 8
Joined: Jun 2015

Good Morning. I was diagnosed with MCL last month. I found a very large lump in my left upper leg, just by a fluke. I've had an ultrasound, core needle biopsy of the node, CT scan, bone marrow biopsy. I started my treatment last week - two days of chemo. Day 1 was bendamustine. Day 2 was that plus rituximab. The plan is to then have a stem cell transplant. 

 

The chemo was fine - my hair will not fall out, but I wasn't concerned about that. I was super flushed and a swollen in the face for 36 hrs and felt a tad 'off'. I only got sick once and felt great afterwards. Every day since about three days after treatment I've been pretty well 100%. 

 

Initially I wasn't sure I wanted treatment - all that and no cure? But I settled down, did a ton of research and am now in full battle mode. I am young, busy and energetic and I have a husband, two kids and a baby granddaughter who want me around. 

 

I have always been super independent and would never ask for help. I've done a 180 on that attitude and am taking advantage of free or inexpensive opportunities such as counselling, yoga, meditation, massage (college students). 

 

I wish you the best. 

 

 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3661
Joined: May 2012

Willow,

You are in the best of hands with Becky, our resident Mantle Cell expert....she has researched the latest approaches extensively for her husband Bill.

 

max

 

.

willow55
Posts: 8
Joined: Jun 2015

Thank you for sharing your story. I was diagnosed last month with MCL, and my emotions are all over the map. I have mad one round of treatment with five more to come (bendamustine + rituximab), then the plan is for a stem cell transplant. 

 

I am am someone that keeps super busy, always healthy, planned everything sometimes months in advance - concerts, trips, etc. 

 

i have a 1 year old granddaughter who is the light of my life. I cannot imagine not seeing her grow up. 

 

I wish dish you continued remission. 

illead's picture
illead
Posts: 874
Joined: Aug 2012

First thing I saw when I got on the forum this morning was the green banner for your private mess, so I went right there before reading these posts.  Hope the info I sent is encouraging.  As I told you, it is unbelievable how much study and progress is happening with MCL.  Your granddaughter is going to have Gramma for a long time.

Thinking of you,

Becky

grannyx4
Posts: 9
Joined: Feb 2010

Hi Joe,

My son Chris was diagnosed with Mantle cell in 2009.  After 6 months of chemo he had a autologous stem cell transplant.

He is 5 yrs remission.  If you would like to speak to him, call him 845-220-7007

He was stage 4 when diagnosed.  He had lymph nodes on his neck which I told him to have checked for years.  Of course

he was 31 yrs. old and didn't think there was anything to my fear.  Each time I saw him I mentioned his neck.

Finally he went (I think it was night sweats also in conjunctions with the swollen lymph nodes)

I believe the chemo he recd was R-CHOP and something else (which I will look back to see what it was)

prior to the stem cell transplant. 

Are they talking about the stem cell transplant?

You will be OK!  I am glad you have your family to support you.  Where are you being treated?

Have a nice weekend,

Lorraine

JoeCostello
Posts: 19
Joined: Apr 2015

Thank you for contacting me. I will give Chris a call. I will be being treatrd at MD Anderson in Houston. I went there initially for a second opinion and after the visit I was convinced that is the place to be if possible. 

grannyx4
Posts: 9
Joined: Feb 2010

Hi Joe,

If you were diagnosed in April, why has it taken so long for anyone to start treatment?  I know in some cases they

have a wait and see for it to advance stages. 

In any case, I am following you on this site and pray for you and your family.  Things will go well for you!

Looking forward to hearing about your remission in the very near future!!!!

Lorraine

grannyx4
Posts: 9
Joined: Feb 2010

Hi Joe,

How are you doing.  Becky told me you were going to MD Anderson for a clinical trial on

ibrutinib.  How has that worked for you?

I mentioned that to my son's doc at Sloan but after

the whole expense thing, they put him in another clinical trial.

It's not working, but not progressing.

We go back tomorrow.

Wishing you the best!

AngiBrazil's picture
AngiBrazil
Posts: 2
Joined: May 2016

Joe, and all others... yes that is the same boat I am on now...

Hi, I am a female, to be 53 years old on June 24th, born from German and Dutch parents in Brazil, where I live - and got very recently diagnosed with MCL...

Mid April I felt an enlarged Lymph node on my neck. But I was feeling OK, no problem at all, hiking miles on weekends, teaching at the University, doing my research, and so on. On May 5th I went to a hematologist, because that node was overly big. She made a physical and found several smaller ones around the neck area, my right tonsil was absurdly enlarged too and she could feel that my spleen was enlarged. So she immediately asked for a plethora of exams, including CT scan from face to pelvis, biopsy of the tonsil and neck lymph-node.

The next day I already had complete blood count (CBC) done and, apart from a normal looking profile of red series (RBC), platelet and white series (WBC, leukocytes) had 38% of additional "other cells". Imunophenotyping of these other cells indicated Mantle Cell Lymphoma. Confirmed by the biopsy results. Diffuse growth, proliferation index, as by ki-67 of 80%. CT scan revealed lots os lymph nodes, the biggest was the one on the right side of my neck (about 4 cm), but one other of 2 cm, 1,5 cm, and then a bunch of smaller ones all over the place, including pericardium. And a moderately enlarged spleen. But all other organs do looking OK. Apart from a high beta-micro-globulin, all other lab tests where normal, including LDH, which was at the upper normal level.

The interesting thing is that I had a CBC done in NY (where I was for work for 2 months), at February 28th (2016), and it was normal. Not one "abnormal cell" was detected then. So surprising life can be...

My hematologist scheduled for me 6 rounds chemo, alternating R-CHOP with R-DHAP. Stem cell collection during last rounds. And then the intention is to go for a very hard chemo (I do not know yet exactly which protocol) and rescue with Autologous Stem Cell Transplantation.

It was all so fast I could hardly breathe. From 9-13 May I had to take 100mg predinisone every day for the 5 days. And allopurinol (daily still), and antibiotics (3 times a week, since then), and some other stuff, while awaiting results of biopsy. Lab on the week after showed no progression. 

May 26 I had a catheter implanted, May 28 I had my first CHOP round and June 1st my first Rituximab (they do it separately the first time to control reactions, I had only a minor which was immediately controlled). I did feel almost nothing, taking the ondasterone regularly two days after chemo (no sickness, no vomiting). And 4 more days of 100 mg predinisone tablets.

CBC on June 2nd, showed only 4% of abnormal cells in the blood and overall decent values for the rest. Today (June 8th) I had a new CBC, and no abnormal cells were detected today(!). I do not know whether this is usual or unusual after the first chemo, but I was not expecting this and am happy. 

But I had a significant drop in overall WBC to 1.115 million/mm3 (normal is from about 3.900 million to 11 million/mm3). The rest of the CBC is fairly OK.

One more CBC to be done next week and on June 20th I will be in the hospital for 3 days for R-DHAP. Is quite heavy (but less than hiper-CVAD). Dreading it a little, because as someone that worked with mutagenisis and DNA repair I am too painfully aware of the treatment effects on the cells. 

But, it is what it is, and in this situation I decided just to shut my eyes and jump. 

I am separated for 4 years, after being married for 20 years, and have two sons, 18 and 23 years old, enjoy life and do not have not the slightest intention of dying from this lymphoma. I just hope not to die from the chemo, hehe (if you can say hehe in this situation). 

That is my MCL story up to now... glad to find a place with others fighting the same "Thing". And Joe, the treatments we have avaliable are improoving very rapidly. We just have to gain some more time and we will take it down. What is/was your treatment plan? Mine is aggressive, but my MCL is very agressive to...

Sorry for my english. Sorry for writing so much. Most probably will not have the endurance to read it all. :)

Oh, and I probably am going to loose all my hair the days to come...

Is there someone that underwent a similar protocol as the one I am beginning with? 

JoeCostello
Posts: 19
Joined: Apr 2015

Angi,

Sorry for not getting back with you sooner. Since getting back from Texas, after 4 months there, we have been so busy trying to get things back to semi normal that I have not been on the net much.

I am sorry for your diagnosis. It is a very stressful time for you and your family. I will put you on my prayer list.

I see you have started a treatment protocol. The one you are on is a very effective treatment. I personally went to MD Anderson in Texas thinking I was going to have pretty much the same treatment. After I got there I met with one of the leading researchers in the country, Dr Michael Wang, and after consulting with him we decided to enter a clinical trial. It was set up in 2 phases. Phase one was Rituxan and Ibrutinib until remission and then consolidation therapy with Hyper CVAD. I just finished 2 weeks ago and have been declared lymphoma free. (Praise God). He seems to think that this therapy will produce a long lasting remisssion. Hopefully so.

I wish you the best as you fight this.  Take care and God bless. You will get through this, you have a lot to live for.

Joe

lindary's picture
lindary
Posts: 709
Joined: Mar 2015

I have follicular non-Hodgkins lyphoma and did 6 cycles of R-Chop. That prednisone an be nasty. Great when it gives you a "power up" and terrible when you crash about 48 hours after stopping it. I had the Rituxan the same day as the Chop.  Had a break of a few months and then had 3 cycles of RICE when the R-Chop did not get all of the cancer. I was scheduled for a auto Stem Cell but there was something odd in my bone marrow biopsy (2 biopsies done afterwards did not show anything odd). We did eventually start stem cell collection but my platelets dropped every time so they stopped. The Dr did looked into a allo/donor/half match but my brother & son were not a match. I've been in remission since Nov and still have no sign of disease. The SCT Dr has decided to put the SCT on hold. I see her in 2 weeks and will get the details of why at that time. 

Good luck AngiBrazil

illead's picture
illead
Posts: 874
Joined: Aug 2012

My husband Bill has MCL, dxed 7/11.  He had Bendamustine/Rit as his chemo and went right into remission.  He relapsed 2 years later and is now on the target drug Ibrutinib and has remained in remission.  You can click on our picture to read his story.  I don't know if Joe will read this or not but I am in touch with him and we just talked last week.  He was on his way home after completing a clinical trial at MD Anderson under Dr. Michael Wang.  He was given Ibrutin as first line treatment, (It was released Nov '13 only for relapsed MCL) so this trial is pretty monumental.  After taking the Ib for some months, he was then given HyperCvad.  Dr Wang was very happy with the results and Joe is finished with the trial other than checkups for a few years.  He is in total remission and Dr Wang feels he will stay in remission for many years.  At any rate, please know MCL is not as ominous as it once was and there is ongoing research and lots of hope.

Becky

khdh2015's picture
khdh2015
Posts: 11
Joined: Mar 2015

Hello AngiBrazil,

My husband Kevin was diagnosed with MCL stage 4 in Feb. 2015. He went through the same protocol as you are facing. He alternated RCHOP and RDHAP and then had a Stem Cell Transplant on Oct. 1st of 2015. He will be glad to answer any questions you may have. Like you said, it is a very aggressive treatment but he is in remission now and doing very good. We wish you the best of luck and will keep you in our prayers and will be here for you along this journey for any questions you may have.                                    

Donna

AngiBrazil's picture
AngiBrazil
Posts: 2
Joined: May 2016

Hi, thank you all! (I actually thought thet I would get an e-mail I anything would be posted here and as I did not, I was not aware of someone answering - just saw it)

Yes, I will come back to ask questions, for sure.

Lindary, your topic about your treatment was the first I read in this site, and I thought, what a fighter, with all this treatments and still going to work when possible! My respect!! My university just gave me time off until december, because of the risk of infection in the classrooms (we are in the winter now and flu is raging, besides severall other stuff).  I am lucky that I am federal employee. I did not know that you have this post predinisone crash - so that explains some things to me.

Becky, your posts I also read a lot and they were very informative to me. Joe just contacted me and I replied offline (thanks Joe).

Donna, I will ask you a lot of things. Just do not have the time just now. Where was Kevins treatment?

Tomorrow I am going to face the R-DHAP. It seems that it will take 4-8 days in the hospital, dedending on how my kidneys react(?).

My response to R-CHOP was good, it seems. Blood cout two weeks after found leucopenie, but no "other cells", so I had two shoots of G-CSF and have now high leokocytes.

I am keeping physical excercise (walking, hiking) - which seems to be a good thing as it seems to avoid or minimise some sublcinical inflamatory status which can cause the so called chemo brain (just learned about that). My MD told me to be careful not to go trough rough trails, with higher risk for lesions (mainly scratches from trees) and bugs (lots of insect-repelent). Oh, and lots of sunprotection.

It seems we all will have a long jorney ahead of us... 

Love,

Angelica

khdh2015's picture
khdh2015
Posts: 11
Joined: Mar 2015

Hey Angelica,

My husband is being treated at Cancer Treatment Centers Of America. He was in the hospital 4-5 days with each RDHAP treatment. We are sending prayers your way!! 

Love,

Donna

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