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Immune system and chemo

Psjeepster's picture
Psjeepster
Posts: 63
Joined: Jun 2016

Is anyone willing to share their experience with chemo completely destroying their immune system?

I was wondering how long it took to get your blood count back to a healthy level.

Did every additional round of chemo destroy your immune system again?

Did it get harder to recover each time?

 

My dad has been in the  hospital for over a week now with a bladder infection and thrush. His blood counts are slowly rising. He has had two blood transfusions. So far is hemoglobin count has only raised to 8, but his oxygen levels are good.

 

After you were done with chemo how long did it take for your hair to start growing back? 

I

po18guy's picture
po18guy
Posts: 1168
Joined: Nov 2011

If dad's immune system was completely destroyed, he would no longer be with us. His immune system was certainly weakaned, but it was weak to begin with, or else he would not have had cancer. Destroying the immune system is done only in preparation for stem cell transplants, and is a planned occurrence. During chemotherapy, damage the bone marrow certainly occurs, but since the marrow is living and breathing just as we are, it normally recovers. How fast and how well no one can say. A lot of it depends on his overall health before cancer arrived.

Most certainly, infection is the second cause of death among cancer patients, after the cancer itself. However, chemotherapy treatments are generally designed to treat the cancer as heavily as the patient can tolerate, because the cancer is the immediate threat. It is a raging fire which must be put out with polluted water. That is the choice which we face in this imperfect world.

I received various chemotherapy drugs for seven years that all did at least some damage to my bone marrow. One drug I was on for 5 years, and it was not chemotherapy, but rahter, a biological drug. My blood counts fell after each infusion, but then rose again afterward. As to chemotherapy/anti-neoplastic drugs, I have received 17 total and I had zero infections during that time. Some people are simply more prone to infection. Sadly, the best place to become infected is in the hospital.

We will hope and pray that dad recovers well from the infection. Hair? As soon as the chemo is stopped, and stops killing the hair follicles, it will begin to grow back. But, it probably will not be the same hair. It might be curly, straight or a slightly different color even.   

Psjeepster's picture
Psjeepster
Posts: 63
Joined: Jun 2016

Wow you have quite a story po18guy. 

I really appreciate the time you took to give me some insight. I hope all is going well for you now.

My family has very little knowledge or experience with cancer. Dad has never been really sick.

Lupus I know we'll because it took my mom from me in 1997. 

My experience with mom showed me that everything seems to be a guessing game. It was always hurry up and get these test done so we can wait for the answers, over and over again. I also found that each test resulted in more questions then answere. It was frustrating but I understood most what was happening.

I do alot of reading. Reading does not give you many real life  answers. 

So here I am trying to understand what is happening to dad. 

Bottom line right now I am scared for my dad

 

po18guy's picture
po18guy
Posts: 1168
Joined: Nov 2011

It does take some toughness, and a lot of that is developed during treatment. We are amazingly resilient creatures, with an ability to bounce back from almost anything. Just being there for him is one of the greatest things that you can do for him. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3626
Joined: May 2012

When I was on chemo my oncologist made an interesting comment one day. My wife had just asked him some question about my "weakened immune system." Let me preface this by noting that he is Ivy trained, and holds five different Board Certifications, among which are Hematology, Medical Oncology and Internal Medicine.

He answered her: "The strength of an immune system is determined by WBC count, and since his WBC count is normal, his immune system is as good as anyone's."

Of course my WBC counts were normal due to the WBC colony stimulator shots (Neulasta) that I got every two weeks, but we understood his point.

I was on r-abvd six months, and never got a cold or the flu.  I never walked around with "the mask." I have not been sick with an infection during the five years since chemo ended, so I figure my immune system is as good as anyone's.  Of course, things are harder on the elderly, and people with other medical issues, if any.

Psjeepster's picture
Psjeepster
Posts: 63
Joined: Jun 2016

I will ask the doctors if he received any type of WBC colony stimulator after his chemo.

He has had 4 blood transfusions in an effort to get his numbers up. His counts the morning after his transfusion 

WBC 4.9

RBC 2.86

Hemoglobin 8.1

Hematocrit 24.6

Mcv 86.0

Mch 28.3

Mchc 32.9

Platelet count 17.1

Map 8.6

 

I noticed that his WBC slowly rises but his hemoglobin count keeps slowly falling.

Everything seems like it is happening in slow motion.

lindary's picture
lindary
Posts: 704
Joined: Mar 2015

I still have problems with my counts being at the low end of normal even 8 months after chemo stopped. Throughout my treatment with R-Chop and Rice I was able to get into work most of the days of a treatment cycle. Coworkers knew when I would be in and my boss told them if they had even the sniffiles to work form homes the days I was in. I am sure there were people who came to work not knowing they were sick and would, a day or two later, work from home. Yet I never got sick. There has to be more to our immune system than just the white cells. 

po18guy's picture
po18guy
Posts: 1168
Joined: Nov 2011

...unless the underlying cancer is of the white blood cells, which can potentially change the picture. T-Cell Lymphomas involve mutated T-Lymphocytes which are defective in their genetic makeup and therefore cannot function normally - yet their numbers may contribute to the total WBC. One other case is in stem cell transplantation. The blood cells produced for some time after engraftment are not fuly mature white blood cells, and their functionality cannot be measured. However, in solid tumor cancers, the WBC is a far more reliable indicator of immune function. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3626
Joined: May 2012

I don't recall if you specified what chemo your dad is on. Most long-term patients on cytotoxic drugs (conventional chemos) against blood cancers receive Neulasta between cycles to maintain normal WBC counts. My WBCs actually stayed significantly above normal due to the effectiveness of this.  Neulasta is massively expensive; I was told by my center that one injection was $7,000 in 2009, and I required an injection each cycle of treatment.

Neulasta causes some people terrible bone pain, especially in areas with arthritis or healed fractures.  I would ask his oncologist if he is receiving the drug. Neulasta is NOT itself a form of chemo. It is technically called a "colony stimulator," which gets bone marrow to produce more WBCs. 

I know some of what I have written here is redundant. Please just use what is new and ignore any unintended repetition.

http://chemocare.com/chemotherapy/drug-info/Neulasta.aspx

.

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

I agree with everyone but should add I ONLY did Rituximab.  My counts dropped, dropped and dropped some more.  Months to years I was .6.  This is low.  Never to my knowledge did I go below .5 (more concerning).  I never became ill until just recentlyly.  I'm up to 3.2 (two years after treatment).

Max is correct and when those white blood cells go lower than .5 your body has a very difficult to horrific time fighting infections.  I looked the needle of a Neulasta injection several times.  I never took it.  I go up and down.  My father was rushed to the hospital, sepsis.  His counts were the major concern.  My parents never learned I too have cancer, when in the hospital for my father; I recall the nurse shaking her head at my father's counts.  Mine were much lower.  My husband looked at me as if I should hit the road and get out of the hospital.  I never left his side.  I was well.  Don't know why but quite thankful.

In my father's experience he took Neulasta, it worked like a charm and saved his life at the time.  Gave me one more wonderful year.

best regards

lindary's picture
lindary
Posts: 704
Joined: Mar 2015

My counts have settled into a range that is low, below the min, but at least consistant with each blood test (which I have been having once a week for the last few months). WBC 2.9-3.3, RBC 3-3.2, HgB around 10.3. My platelets are the only thing that seem to be going up and are now at 163. I've got 3 weeks until my next Rituxan which usually knocks them down a bit. I would be so nice if the counts would keep going up between now & then. based on the last several weeks, they will keep going up & down. 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3626
Joined: May 2012

When Neulasta is injected is critical for its effectiveness. It can be neither too soon after an infusion, or too soon before the next. On abvd, when everthing is given on the same day, two weeks apart, the timing is simple. Most regimines are more complex, however, and require some tinkering by the doctor..

Link details timing requirements for Neulasta, which of course any doctor knows anyway, but it is something patients should be familiar with: Wait 48 hours after an infusion, and with the newer, longer acting form, two weeks before the next infusion. Original-form Neulasta can be administered closer to a pending infusion.  I got my infusions on every other Friday, and the Neulasta on the following Monday morning, and my WBC count never went low, during six months of r-abvd.

max

http://chemocare.com/chemotherapy/drug-info/Neulasta.aspx

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

We are quite similar there.  Feel like I'm getting my mojo back.  How about you?  In the last few months my counts have gone up to 3.76 highest in a very long time!  Sexy!  Look forward when I don't even know what they are!!!!!

What I find interesting is that when they were really low (.6), I was at risk and never sick.  I played my role (hiding my "c") brilliantly yet that exposed me to things perhaps I shouldn't have been.  Rushing husband and son to hospital, not to mention my dad and gram.  Hospitals to me are Petri dishes yet thankfully I have always been well.  

Now they are on the rise and I got shingles, then an allergic reaction to the meds which was realllllllllly awelful and a few other odd ball things.

Best part, counts were less than 2 at the time.  Three doctors scratched their heads and said I had the smallest lesion of shingles they have ever seen.  Immune system is far better than they imagined even with being deficient in Igm and low in Iga.  Things are not always as bad as the numbers.  I know I eat crazy healthy, I think it helps.  So do both my Onc's. We just never know.  Both think a strong mindset has a lot to do with it too...

 

 

 

 

 

Psjeepster's picture
Psjeepster
Posts: 63
Joined: Jun 2016

I really had no idea how strong our bodies are. Watching Dad go through all of this, overcoming huge new obstacles everyday. 

Reading everyone's stories and realizing that.... yes this is all so scary. Some days are such a nightmare, but we got this. It just takes a little time.

 

Good news is.... Dad should be able to go home tuesday. They think by then he will no longer need the feeding tube either. I have to talk him into eating but he is getting better at this everyday. He is now able to walk anyplace in the rehab center as long as I am with him. I will be spending the next few days learning how to give him his shots, wound care, etc. 

 

The funny little things that mean so much.. Dad asked me for a QD blueberry donut. He ate the whole thing.  

illead's picture
illead
Posts: 871
Joined: Aug 2012

I hope your father continues to improve, I think he will, Lymphoma reacts so well to treatment.  You will be seeing that light at the end of the tunnel.

Becky

Psjeepster's picture
Psjeepster
Posts: 63
Joined: Jun 2016

Dad is out of the hospital and is doing good. Looks like his 2nd round of chemo will be next week.

I asked the oncologist today about Neulasta. He did not receive this after his first round. I asked why and they said they don't know. So I asked if we could do it on this round and they said yes. I hope this will help prevent him from getting this sick again.

Rocquie's picture
Rocquie
Posts: 850
Joined: Mar 2013

I am so happy your Dad is home and thank you for being such a loving son and caregiver.

Neulasta can be very painful. It stimulates the bone marrow and the bones hurt. It was recommended to me that I take Claritin to eliminate the pain and it works. I took it on the day of chemo (Neulasta would be the next day) and for a total of 5 days each cycle of chemo.

After my first Neulasta, I wound up on morphine the pain was so severe. Once I started the claritin, I had no more pain and I had the shot 8 times. Also, my shots were given in the stomach. Don't believe the horror stories about getting shots in the stomach. It is much less painful than the arm or fanny.

Be sure to check with the doctor before giving the claritin. My doctor scoffed it but said it wouldn't hurt me. Later he told me clinical trials are being conducted with it.

Blessings,

Rocquie

 

Psjeepster's picture
Psjeepster
Posts: 63
Joined: Jun 2016

Thank you Rocquie,

I will keep this in information in mind. I will watch for the pain and look into the claritin.

lindary's picture
lindary
Posts: 704
Joined: Mar 2015

I didn't have much bone pain with Neulasta but when I got the Neupogen it did bother me. The Claritin really did gt rid of the pain. I took it about 30 mins before the shot. 

yesyes2
Posts: 592
Joined: Jul 2009

Hi Psjeepster,  It is my understanding that Medicare will not cover the cost of Neulasta until there has been a neutrapenic episode and/or hospitalization.  Sounds like your father qualifies in both catigories.  That may be why your father did not receive an injection with his first round of chemo.

Rocquie,  I too received my injections in the stomach and all six were easy as can be.  Actually one was pretty painful as the nurse injected it very very slowly.  She had never done a stomach injection of Neulasta and didn't know how I guess.  I was very lucky as I never experienced bone pain either.  I think it's because I have RA and am always having various pains in my back and joints.  I never took Claritin but would have started if I had had pain.  Besure to take the Claritin before you start the injection.

Hoping things will continue to improve for both of you.

Leslie

Psjeepster's picture
Psjeepster
Posts: 63
Joined: Jun 2016

Leslie, thanks that makes sense. 

Again thank you everyone for all the insight 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3626
Joined: May 2012

I knew fellow patients while I was on infusion who were intitially refused neulasta for insurance reasons, but am unsure if they were on Medicare. Some were refused EMEND also, but later received it.

My injections were all in the stomach, relatively painless. My first injection caused me also severe pain, and I was later cut to a half-dose, but the half-dose kept my WBC counts normal by itself.  Patients with significant arthritis or previous fractures are much more likely to feel the bone discomfort.  I hope it is not a hardship for him.

max

Psjeepster's picture
Psjeepster
Posts: 63
Joined: Jun 2016

Dad has medicare, and 2 blue cross blue shield, one from GM, and one from his wife when she retired from the state of michigan.

 I will suggest half dose with his doctors 

He does not have a history of arthritis or fractures.

 The chemo he is receiving is

Rituxan

Cyclophosphamide

doxorubicin

Vincristine

Prednisone

So this is R-CHOP right?

 

 

 

 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3626
Joined: May 2012

Ps,

The drugs you listed are R-CHOP, the most common combination given first-line for most NHLs.

I did not "recommend" that your dad get a half dose of Neulasta:  I said that I received a half dose due to severe arthritic pain.  Neulasta might not hurt your dad at all.  We here cannot make medical recommendations. We are not doctors and do not write as medical prosfeesions, but only as people sharing experiences.  His doctor will determine what is appropriate for his care.

max

Psjeepster's picture
Psjeepster
Posts: 63
Joined: Jun 2016

I understand that you did not recommend half dose. I read what everyone writes on here an look at as an option if I need to. You gain a lot of knowledge by listening to people with real life expelrience. I really appreciate the time you have put into posting.

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