Mom (63 years) died after first chemo

Physical Health Cancer
1

hi. i wanted to see if anyone had a similar story because i can hardly believe what's happened to me in the past 5 weeks.

my mom had a clean colonoscopy when she was 60 and then this past spring/summer (3 years later), she went to the doctor with what she thought was gas pains. they treated the 'gas' but it didn't go away, decided to do another colonoscopy to find a mass, then biopsy, etc. my mom was diagnosed with stage 4 NHL in september.

first question: how do you go from a healthy person who does regular checkups, bloodwork, etc. to having a raging stage 4 lymphoma with NO SYMPTOMS? common or not? how do i know that diagnosis was even right in the first place?

she had a (chest) port put in, went for her first chemo on sept 27. two weeks later she wound up in icu swollen and in severe pain. she went on to have a heart attack that night, then they found a staph infection at the port site, then the downward spiral and we lost her two weeks later. she had sepsis, renal failure, wound up on a ventilator, etc. it has been the most horrible thing i ever had to be witness to however, thankfully i was there two days after she was admitted until her funeral. (i live abroad but came home the moment i knew something was wrong.)

second question: is that common for a staph infection to develop that quickly and take a life? does that sound strange to anyone? does that sound like a problem with the care she was getting?

i realize that i am the daughter and am hypersensitive and am still grieving, but in my logical mind, i just can't believe how this went down so quickly for something that is supposed to be so 'treatable' with this CHOP recipe. i just feel like she was completely robbed by something that was supposed to be 'textbook' as they say. i am not saying that cancer is not serious in any way so i don't want to offend anyone and i don't mean to oversimplify.. but this is basically paraphrasing what the oncologist said to me... 'if you are going to get cancer, NHL is the one you want because it is the most treatable.'

third question: could it have been a chemo overdose? or do some people's bodies just simply respond that way after ONE treatment?

i am in the process of getting medical records and understanding exactly what type she had, what happened to her in that whirlwind two weeks in the hospital, etc. i need more information presently. what is the deal with these ports!? i understand there are options to administer therapy but don't understand how the risk was so apparent so early in the game. she didn't even have that thing in her chest 4 weeks.

any insight is appreciated. thank you.
jen

2

I'm sooo, sooo sorry to hear what happened to your Mom :-( I'm glad to hear that you're obtaining your Mom's medical records. Unfortunately NHL can progress quickly undetected. I would be interested to hear what type of NHL your Mom had. My husband had diffuse large B cell lymphoma (DLBCL). You can read his story here -

http://non-hodgkins-lymphoma.supportgroups.com/sg/non-hodgkins-lymphoma/da-epoch-r-is-the-bomb

Or you can click on my username (2dawn), click on view posts, and click on DA EPOCH-R is the bomb!

My take on what happened goes like this - Sterile procedure was broken during port placement which allowed staph bacteria to enter the surgical site. Mom's immune system was keeping the slight infection at bay. Mom had chemo treatment which lowers white blood cells (WBC's - the cells that fight off infection). The WBC's drop to their lowest point 7 to 10 days after chemo. So, 7 to 10 days after her chemo the staph bacteria were allowed to multiply unchecked due to her immune compromised - chemo related - condition. Yes, when a person is immune compromised the infection can spread rapidly.

Sorry to be the bearer of my take on this hideous situation, but hope it brings you somewhat closer to the answers you are seeking.

What country and what facility did your Mom have her port placement?

My heart and prayers go out for you... Please keep us informed.

3

hi 2dawn
not exactly sure what type she had. she didn’t involve her children up front. i just basically got the call one day ‘so i had my first chemo today…what did you get up to?’ (typical mom) then she was gone a month later. so i am getting the records together shortly and will be able to know what specifically she had (B cell/T cell/other?) and what the staph infection was. i am still getting used to the terminology, etc. and functioning at 50% capacity these days, so i’m definitely in slow motion.

she was in the new york but i’m not sure where the port placement procdure was done. i’ll get more informationg though…

thank you for the response and good luck.

4

Sorry, but the link I posted is not showing up in it's entirety for some reason, and will not take you to the appropriate page.

5

I am also very sorry. That is just so terrible. I too have just completed my first round and I did get an infection about 7 days out. My primary doctor caught it and immediately put me on Keflex which is an antibiotic and I am praying that will take care of it. I don't know where the infection is at least I am on antibiotics. I have DLBC as Dawn's husband which wasn't caught until stage4. Unfortunately I have other diseases that mimic the symptoms of NHL so it went undetected until I had a break in my hip without a fall. If I would have not gone to my primary and she saw my bloodwork I am now wondering if my onco would have even called me. He hasn't yet and he has the same results. Dawnsie is right, tear those medical records apart and trust your gut. Nothing in this life is certain except the love that God has for you especially in your suffering. I don't mean to preach but I have found in my 54 yrs of life this is true. If you just want to come here and talk with us please do. We want to help you in any way. This is a terrible disease that people think just because it shows on paper that most people are healed there are some that aren't or it come back. Each and every person is important we are not statistics. Again I am sorry for your great loss...Lori

6

hi, my last treatment the needle pulled out of my port and i received rituxin in my tissues till i spoke up that it was burning. i didn’t have any complications from it but i hear you. I’m soo sorry for your loss. people do die from chemo and so far I’ve been fortunate that that is all that has happened to me. could your mom’s blood cell counts have bottomed out so that the staph infection took over? well, hang in there and keep us informed about what you find out.
take care. mbh456

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loril - thank you for the kind words and insights.

mbh456 - strangely, when she went for her 'booster shot' the second week, they didn't give it to her because they said her counts were fine. (this is what my dad tells me) then the next week she was rendered completely immobile and the infections (i surmise) took over. let me get the records organized and i can post more info. but i do appreciate that though patterns of some of the replies i have been getting..so i thank you!

good luck to all!

8

Hi Jen. Just a FYI -- with every treatment of CHOP-R, I received the day-after booster shot every time. It wasn't dependent upon what my blood counts were. NHL can turn from indolent to aggressive in a blink of an eye. A person can have an indolent case and not know it for years -- even ten years. This is what happened to me. I had symptoms of pain, sweats, low-grade fever, rashes -- but nobody put it together until the cancer turned aggressive. I feel very fortunate I was diagnosed when I was because I don't think I'd be here now -- even though my cancer was Stage IV. It was pretty frightening. The Rituxan, (the "R" of CHOP-R) is a biological agent that targets the NHL tumors, and has turned out to be the miracle drug for us. It has dramatically turned our survival statistics around. I was fortunate to have a very good placement of my port, but the oncology nurses told me that this isn't always the case. Some patients experience a lot of problems. I had to have my port flushed every week for 1 1/2 years -- even after treatment was over. They're very careful to keep it clean because of the risk of infections. You might want to have a look when you get your mom's records to see how often she was getting her port flushed. I can't even image your anguish for this situation and the lose of your mom. I hope time brings you a gentler reality and that you get some closure from looking into the records. Take care of yourself Jen. Warmly, Sesheta

9

moms-jen:
Sorry to read of what happened to your mom. I like a lot of what people have said so far, I don't have much to add beyond:

1) The fact that your mom's lymphoma remained undetected until it reached stage IV is not surprising, as regular check-ups and blood work would not likely arouse any suspicion. Lymphomas simply don't show up like that; they show up on more in-depth tests like CT scans or PET scans. If there are no outward clinical signs to be detected by a primary care doc, the odds aren't bad that it'll be overlooked, especially if the patient is symptom-free.

2) The staph infection at the port site could either have been new-- meaning it began with an infected port ... or did your mom have any history of any procedures on her heart in the years leading up to this? I ask because the sepsis that followed, and then the organ by organ failure that followed, reminds me of someone I know and it's possible that your mom could have had something simple, like a valve replacement, done a couple years ago, at which time a fungus could have developed that didn't become evident until now, at which time it was far, far too late to do anything. In other words, if you intend to look through her records, I would look back at least a few years and see what kinds of procedures she's had done over the recent years.

Again, I'm very sorry for your loss.

Ross

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Sorry too hear about your mom loss,but Ross comment as explain everything so far. I was diagnose with the stage 4 also and all the blood test I was taken was coming back negative and was going to the doctor every week and he never caught it until I decided to see another doctor who had diagnose me right away and I had to be a high dose chemo. If your mom from the island maybe she had the HTLV_1 virus which they didn't caught because when you are from the island especially Jamaica, the Meditaerian or Japhan people always have this virus and if you don't catch it soon enough you can died from it. So check into this also. Good luck.

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thanks to the latest members who posted.

Ross - she never had any procedures done on her heart. she never even had heart trouble. she was overweight but always had normal blood pressure, etc. she had a heart attack the first night in icu, then another one two weeks later that ultimately killed her..

suffice to say, if i don't post for a while, i'm getting information together to come back to this forum.

12

moms_jen

I too regret your loss and I question how it occured. For what it's worth, I'd ask a pathologist or medico-legal person to review the file. I know things happen but you don't want it to be due to someone's negligence. JMHO.

13

dear moms_jen, im so sorry about your loss. i too lost my mom 6 years ago. in a period of one month- she collapsed one morning then we found out she had advanced liver disease, and she died after 4 weeks in the hospital. those agonizing 30 days were the most wrenching ever, she had to have dialysis, then she had internal bleeding then surgery, to coma. and now i just found out i have NHL. i will have my first appt. with the oncologist in 2 weeks. and im very very scared. i went to work today and it seemed things are normal except for this. so sorry, madeline

14

So sorry for your loss, it is very common to not be diagnosed with Lymphoma until it is quite advanced, I have it and I am listed as an "A" which means no symptoms. I got a swollen lymph node one day and that is how I found it.

To have an infected port is not common but one of the things they warn you about. Every time they use it they need to mask themselves and clean, clean, clean, before they insert the needle. There could have been 1 little staph bug floating by that jumped on between the cleaning and insertion. In this case it is no ones fault. I have seen many staph infections go as you mothers went and that is why they say it is better to be at home than in the hospital because those type of Staph bugs breed there. The port does lead directly to the heart and that is why only specially trained nurses will use it.

In 2 weeks she could have had a very nasty infection or even in 2 days. I suspect you will find she had a MRSA infection and they are the staph that explode over night to horrible infections.

It is good for your self that you check into this and know that everything was or wasn't done so you can feel the relief you are seeking. A passing of a parent is terribly hard and I one so fas makes it even harder. Sorry for your loss! HUGS and Prayers for strength.

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Hi Moms-Jen,Welcome,so very sorry for your loss.Many people have the belief that if your in a hospital or such setting things are done my the book.Wrong!Both my parents are passed but spent many many days,months in hospitals.I should write a book on all that horror I saw throughout those years.One mistake after another,infection after infection,overdoses,just plain incompatience .I understand most family members can't be there 24-7 but I'm telling you truly need someone looking out when you can't.Our health care today is terrible!!!Don't get me wrong there are still compassionate caring healthcare workers.What I'm saying is there are more that don't care then do.Both parents had stapf infections mom has 3 different kinds.So senseless some of the things left unchecked.What I learned from that is by God you better speak up when things are going array.They on the other hand want you to hush and sent you on your way.So senseless and sad.May the good lord be with in you quest for answers.Good luck.Hugs,Michele Dx95 FNHL3

16

Hi,

I am so sorry to hear about your mom and wish that the doctors could have caught her cancer early. I was lucky that my slow growing (indolent) type of NHL reared its ugly head just above my collarbone with 1/3 large B cells. The doctor who gave me a second opinion said that I could have had it for a long time. I hope that you find some answers and peace.

My prayers are with you. Your mom was still young (I'm 68)

Ann

17

My mom was diagnosed two weeks ago with stage four lung cancer went in wednesday march 14th for her first chemo treatment went back to cancer center the next day thursday march 15th for "some kind of shot"
she got sick fri,sat,sun,.mon night she went back to cancer treatment center they said she was dehydrated so they gave her fluids the next day tuesday march 20th she died of fluid on the lungs phnemonia.Regret is not even a close emotion to what I'm feeling for not researching chemo better but I do know That five days before she died and before her one and only chemo treatment she was dancing singing karoake and picking out furniture for her new house on the lake Some people say that my grief and pain is so bad I'm trying to blame anyone I can but can anyone please tell me how the night before my mom died she was recieving fluids through her port and the next day died of fluid on the lungs ANYONE PLEASE did chemo kill my mom or could the fluids she was given the night before have caused phenomonia?THANKYOU!BROKENHEARTED!!!!!!!!!

18

I don't have any insights or knowledge how what happen to your mom occurred. But I can tell you that I feel deeply for your sudden and unexpected loss, and that, of course, you are dealing with the anger that pops it's head before you grieve. and subsequent healing. I pray you are able to find the answers you seek,and find some comfort in that. What happened is not your fault. I lost my brother to lung cancer...he aws dx stage four, and had suffered a stroke after his first treatment. I understand the depth of your loss. Yu also need to remember to take care of yourself. so you can cherish her memory and live in a way that reflects your love for her.

19

I, too am so sorry for the sudden loss of your mother. It is tragic and I'm sure surreal.

I was diagnosed (dx'd) stage lV Follicular NHL. Basically healthy, save for Fibromyalgia, which may have been NHL all along ; we'll never know definitively. I had caught a cold that was making the rounds in early spring 2007 and by July, still had a cough and this huge, fast growing lump under my chin that I named "Ellen" after my surgeon's office clerk. If it hadn't been for it's unsightly appearance, I would have just chalked it up to allergies.

I lost three friends, two with NHL and the other with Hodgkins all in the space of a year. We all live in the same "neighborhood" that stretches for about 7 miles in rural Northern California.

My friend with Hodgkins was walking into, as I was walking out of, the mobile PET scan treatment center. Neither of us knew the other had cancer at that time. We both had chemo the same day on two occasions. According to her family, she passed away because she was "allergic" to the chemo. I still question that, but it was a shock to learn of it.

My second friend of nearly 25 years, had NHL and was scheduled for a 6th full cycle of chemo; next tx plan would be her second SCT which she stated she "didn't want to go through again". She brought me soup after my 2nd or 3rd round of chemo- I had just had my head buzzed. She had FNHL for several years and was "just tired" of the tx and NHL. She passed away within 4 months of our last visit.

My third friend, dx'd with FNHL was on W & w. By the time she had transformed, it was too late. She passed away shortly after her first round of chemo; again, the family was told she was "allergic" to it.

I don't know if any of my friends had a second opinion, but I can not emphasize how important it is for the dx and tx plan.

Just last week, I found out that 2 people we knew, one our local postmistress and the other the wife of a friend of ours,just passed away- they all live off the same stretch of highway I do. The tally is now up to 15 people I KNOW that had or have Hodgkins or NHL. It is interesting to me that an article I just read last night stated that men are more likely to have lymphoma; I know only women, (other than the men on this site), and have heard of two men in the neighborhood that have lymphoma.

Since it has only been a couple of weeks, and my neighborhood is just coming out of hibernation, I expect to hear more details regarding their passings. Until then, I can only pray for them and the others I know, and thank God I'm here for my second grandchild and the rest of the milestone's in my friend's and family's lives.

I just figured out today, that this July will be my 5 year anniversary from my July 2007 dx. I had to ask the onc when the actual countdown begins for the 5 year plan. So, I'm pretty excited about that. BUT, I just learned that I had been in remission since my first round of chemo was completed. Its only been a few months that I feel pretty good, knock on wood, save for the chronic lack of appetite and fatigue.

My best to you, dear. Keep up with us and your research. I'm sorry this terrible event has now become part of your life. As we say here, your New Normal. Keep digging until you're satisfied with all of your questions being answered.

Welcome to SupportGroups.com NHL; this site and reading the older and newer posts may help you tremendously and, of course,asking any questions you may have or sharing your thoughts are all welcomed.

Good Luck seems to be the phrase; but Divine Intervention is my hope for you.

Robin

20

Hi
Yes I've been there too!
My mum was diagnosed with Colon cancer end of September: she passed away on 13th October five days after her first chemo. We were so hopeful as she was a strong positive woman who loved life.
But....We took her into A&E as she got so weak and dehydrated. She had an infection she couldn't fight off....
I was at her bedside as she slept and just flew away like an angel.
I miss her....it's just unbelievable!!
I know she didn't suffer much at the hands of cancer but I would give anything to have her with me for just a little longer.
I can't help but think we should never have gone down the chemo route!!!
She would still be here celebrating the coming new year with us.
I miss her...