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PCP Pneumonia

Marie12
Posts: 6
Joined: Oct 2015

what a long bumpy road this journey is. My mom was diagnosed with DLBCL in late July and started R-CHOP, recently finished her 3rd round and Now we are in the hospital with a potentiaL PCP pneumonia. After 3 days or failing on antibiotics and continuing to go downhi they believe this is what she has. She is so weak and can barely walk at all, has to have 2 nurses lift her to use a bedside camode. My heart breaks and I want to make it all go away for her. Can anyone tell me their experience with PCP pneumonia? I know its rare but I'm hoping she improves and comes out of this. She was so healthy and self sufficient prior to lymohoma. And after the PET scan after her second treatment the lymohoma looks to be gone. I hope she doesn't beat the cancer battle and lose to this damn pneumonia. Thanks for any input and advice. 

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

I can't offer you insite on PCP pneumonia but I know what every bit of what your feeling.  My father was diagnosised with lymphoma.  After his first round of RCHOP he got sepsis and was very ill.  Sounds similar to your mom and they even thought he may have had PCP too.  It was a long hard road but he did recover from the sepsis.  I changed my life and spent every day with him at the hospital and even at home for months.  I hope and pray your mother recovers.  I will have you and your family in my prayers.

Don't lose hope

xoxo

Marie12
Posts: 6
Joined: Oct 2015

Thank You so much for the response. so sorry you had to go through this with your father, I sure hope he is doing well now. I can relate to changing whole life. My mom lives alone so i have been staying with her constantly bc the treatments made her so weak. I have three children and I feel so guikty because I am missing out on so much in there life rifht now but my mom needs me. She did so very much for me and I want to be there for her in the very difficult time. It still feels like a bad dream and that I am in such a fog. Like I'm going throught the motions m. I imagine one day I will look back on this and wonder how the hell did I get through it. Im trying to to stay positive but its just so hard. My mom is a completely different person right now. So weak and can't do anything for herself. I sure hope God gives her the strength to beat this damn infection and disease. I hate cancer. God bless.

 

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

It seems like yesterday when I was in your shoes.  I didn't have to stay 24/7 with my father because my mother took care of him but I was there everyday, much of the day in the hospital then at home.  I have two children who understood but they are 13 and 16. 

I will never regret an ounce of that time I spent with him, it was difficult and have no idea how I got through it but I did.  We almost lost him then, it  was very bad but he did get better.  Everyday I had was a blessing.  He lived a little more than a year after that.

You will need to dig deep and you will surprise yourself.  Your love for your mother will make your efforts easy even though what your doing is very difficult.

You're your mothers advocate so ask lots of questions, right everything down, trust your gut and be vigilant.

Breathe easy, be good to yourself too.  You and your mother are in my prayers.

God Bless

Marie12
Posts: 6
Joined: Oct 2015

So sorry about the loss of your dad. i use to think i could never live without my mom but am realizing that that could easily be a reality sooner rather than later. Was your dad able to finish his treatments? I know you mentioned he lived another year and at this point I would do anything for my mom to have another year. She has been through 3 R-CHOP treatments which have made her extremely weak, had a hard time walking on her own even before the infection because of the treatments. She's lost almost 40 lbs. the dr has goven us options but said if we don't complete the 6 rounds it could come back very quickly. But no one knows for sure. i just dont know if moms body can handle one more treatment. She looks to me for advice and to make these decisions and I just don't know what to do. I know I would give anything to have my old mom back but realize she will now never be the same. Thanks for your advice And shaking your story. 

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

My father was 77 had one treatment of RCHOP,  10 days later we rushed him to the emergency room they thought he had pneumonia but ultimately they said it was probably sepsis. It almost took his life.  Once he made it to the hospital the doctor told me he wasn't going anywhere.   It seemed impossible to imagine but my father did get better.

 After he left the hospital it seemed like we were on our own.  My father did not have a good medical team in my opinion.   My fathers in oncologist did not want to start up treatment, he fear that my father could not handle it. This I agree des with but I didn't accept not treating his cancer.  My father had a very aggressive form of cancer and without treating it I knew my father did not have long.  Fortunately my two best friends are oncologist one is my doctor.   It was my doctors recommendation that my father start drug called Imbrutbib to treat his cancer.  This worked very well for my father but he was on the lowest dose possible.  My father was not monitored properly, he never had a scan or a bone marrow biopsy.  The cancer came back.   My parents thought everything was OK but I was seeing red flags everywhere and when I finally got involved it was too late.  This of course is the shortest version possible.

What type of cancer does your mother have?   My father had Mantel Cell Lymphoma.  There are many people who can help you through this on this site.  Any every question you have.  Get all the details, grade, stage treatment etc.  You then should be able to formulate questions for your doctor.  Information is power, be your moms advocate.

It was clear my father could not handle His treatment.  He did much better on Imbrutbib.   My father regain his strength slowly.

 I hope this helps you in someway and other chime in when you have more details.

 

Good Luck and God Bless!

Marie12
Posts: 6
Joined: Oct 2015

Ok, so I just clicked on your name and it says follicular cell, and I noticed you said you said you had an oncologist, and your dad had mantel cell. So I'm sick thinking you have/had cancer too?! If so I'm so very sorry to hear this, just not fair at all!!! My mom has stage 4 diffuse large B cell. Very aggressive , has 2 gene mutations that are not a good prognosis and in her spinal fluid so she had to have lumbar punctured with chemo as well as the normal chemo. Even as im writing this it dowsnt feel real, so weird. ibk kW you mentioned you have 2 kiddos. I have a 7, 4, and an almost 3 month old. i named my 3 month old after my mom and one week later we received this diagnosis, how strange. thanks for the suoport and I'm thinking and praying for you as well.

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

The last year was a bit tricky for me no doubt.  Within moments of my diagnosis I was grateful it was me and not my children, husband or anyone else I loved.  Then three weeks later my dad.  To this day I haven't told my family.  My children and a few friends, that's it.  Hiding it was more difficult than having it.  I didn't even find this site until almost a year later.

I too was living in a fog, thick and heavy.  It didn't seem real and still had to function.  At the time my children didn't know so full steam engines ahead, life had to be normal and the show must go on.

I hate you're having to endure this, it like a wicked storm but be your mothers rainbow.  My fathers prognosis was bad as well, he was in a terrible state but I had a year which I never thought possible.  God gave us more time together, an opportunity to communicate, love, rise to the occasion and give back to someone who gave so much.

I will never regret that.  I pray that you too will have lots of time together and she kicks cancer right where the sun doesn't shine!!!!!!

Just remember there is no reason why your mom can't be in that percentile  who dazzles the doctors.

You're teaching your children a valuable lesson and how lovely a three month old bundle of joy!  Beautiful!!!

I know it's hard to stay strong, try to did deep and be good to yourself.  You need a rainbow too and it seems you may have three :-)

Marie12
Posts: 6
Joined: Oct 2015

Well this just breaks my heart. Life isn't fair. You are such a strong amazing woman. Thanks so much for sharing your story. I hope you are doing well now and have beat this horrible disease. You will be in my thoughts and prayers.

 

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

Cancer never met the likes of me before, I kicked it right where the doesn't shine.  

THANK YOU, there is nothing amazing about me.  I had little choices and grateful because as bad as it was, I know it could have been much worse.  I miss my father terribly.  That's my weakness but I'm determined to celebrate the man he was.

You're the amazing one.  You are the mother of three young children and caring for your mother in this most difficult time.  I know how hard it is and your deepest fears.  Find your rainbows, fill your mother with love and laughter to help her regain her strength And fight this fight.

God Bless You and your mother.

How is she?  Is she improving?  Eating, drinking?

Hang in there, I don't say that lightly...

Sending you positive energy and prayers!

Max Former Hodg...
Posts: 3690
Joined: May 2012

Marie,

I'm sorry that your mother has not trended well since your first post.  I have read that ordinary treatment for PCP pneumonia usually lasts around 21 days when the most common drugs are used, so perhaps she will see some resolution soon.

I once had a pneumothorax, pneumonia, and lung blood clots all at once (not because of cancer, but following trauma), and know that breathing difficulties are among the most terrible and miserable out there.

I hope you get a bit of good news soon regarding her condition, and wish blessing upon you and her both,

max

Rocquie's picture
Rocquie
Posts: 857
Joined: Mar 2013

Marie, I hope your mom is feeling better and recovering from her pneumonia.

I also had a bumpy road through R-CHOP and want to share a bit of it with you. With my first 3 treatments, I wound up hospitalized with neutropenic fever, staph infection in port and sepsis, removal of said port, SIADH, pleural effusion and thoracentesis, pancytopenia, anemia and numerous blood transfusions. I was discharged with a walker, home health physical therapy, and a 1 week delay in my next chemo. Another time. I had MRSA in my biopsy incision and home health nursing to supervise infusing myself twice a day with vancomycin, for 2 weeks. Once again, my chemo was delayed by 1 week. 

After all this, my R-CHOP was reduced to 80% and I took antibiotics (Cipro--ugh!) for 10 days each cycle. I had 8 treatments of R-CHOP and have been in remission for almost 3 years. There is hope! 

Prayers and hugs,

Rocquie

 

lindary's picture
lindary
Posts: 710
Joined: Mar 2015

My R-CHOP started out a little bumpy too. I mean the first session went well. About 5 days before the second session I woke up shortly atfer midnight with a lot of pressure in the abdomen. It felt like really bad constipation. After several hours in the bathroom with no results my husband insisted it was time to go to the ER. There they found out I had a perforated bowel. The tumor in my abdomen had been pessing against the bowel long enough to create an adhesion. When it shrunk from the chemo, it pulled some pieces out of the bowel. When they did the surgery they got a better look at the tumor plus they put in my port. Recovery time took a few weeks and I was released by the surgeon in time for what should have been my third round of chemo. After that everything went according to plan and the R-CHOP plan was extend so I sitll ended up getting all 6 sessions.

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