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Nuelasta side effects

madrasius
Posts: 1
Joined: May 2018

Hi,

 

I am glad I found this support group. My sister has large diffuse B cell lympoma. She went through the first cycle of chemotheraphy and on the 6th day they gave her nuelasta. She has been having bone pain and other pains all over her body for about 10 days. She took claritin, tylenol with no effect. She tried oxycodone abut the pain comes back after the effect wears off. Is this normal to have pain lasting for more than a week? Are there other treatments than EPOCH that will be less severe? any kind of insights deeply appreciated. It is hard to see my sister suffering especially when she has no health issues, did not even take aspirin or any other medication until this horrible disease.

Evarista
Posts: 242
Joined: May 2017

Hello, Madrasius, and welcome.  Yes, the Neulasta pain can be tough. I know!  A few things that I learned after my first round:  1) starting the Claritin (10mg) a few days before the Neulasta injection and taking it continuously afterwards can be helpful (I just stayed on it once I started); 2) It must be Loratadine. Generic is fine, but substituting a different anti-histamine did not work; 3) Having the bone pain once does not mean that she will have it the next time(s). Why Claritin/Loratadine helps is unclear, but there is a lot of anecdotal reporting to suggest that it does.

If EPOCH has been recommended by her oncologist, it really is probably best to stay with that.  There may be other treatments less severe, but they may not be ideal for combatting her particular NHL.  And that's the goal, right?  I know that it is difficult to see her suffer. Wishing her all the best and again, she may not have these symptoms at all with her next round.

twowheels's picture
twowheels
Posts: 13
Joined: Jun 2017

In addition to Evarista's comments. Q's

How frequent is your sister's ANC (neutrophils) tested/monitored? (my ANC was NIL/22 on the day I was to receive 2nd trtmnt C1D15. After that, I had a blood lab/CBC w/diff twice/cycle)
Assuming this is the SINGLE shot (per cycle) Neulasta, she could mention/request if the daily Neupogen shots would suffice. (then stagger/pulse-dosage the shots to every other/third day).

I self-injected Neupogen and after my first lab, was able to reliably guage my ANC. I then staggered 2 or 3 shots during each of my 6cycles (ABVD).

OT: One reason my Onc had me on the daily, (nothing to do w/your sister's EPOCH), neupogen may increase risk of pulmonary toxicity of Bleomycin, so this was a way to limit/minimize dosage for me.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3154
Joined: May 2012

Two wheels,

I had never heard of the neulasta-Bleomycin link.

I had severe lung toxicity throughout my entire 6 cycles of R-ABVD, and for a few years thereafter also.  I now have about 25% loss of lung volume, due to fibrosis, but my pulmonologists believes most of the fibrosis was from stomach acids (severe GERD), not from the Bleo.

( Note to other readers:  EPOCH does NOT contain Bleomycin, the drug I was discussing with twowheels here. )

twowheels's picture
twowheels
Posts: 13
Joined: Jun 2017

Clinically, filgrastim (g-csf) use appears to increase the risk of BPT in HL, with BPT occurring in 25.6% of ABVD treated pts who were exposed to filgrastim in one study1. It remains unclear whether pegylated filgrastim, with a delayed onset of action, also leads to increased BPT. We previously reported2 a small series of HL pts who were predominantly treated with pegfilgrastim with ABVD and did not find increased BPT. We now report an update of our experience, including a larger subset who did not receive pegfilgrastim.

Full artcle www.bloodjournal.org/content/128/22/5350

My Onc (Clinician, Hematologist and teaches at Univ/MDA) actively chose individual-dose Neupogen (unbeknownst to me) to be injected not before 96hrs post-treatment due to amplifying effects of bleo's pulmonary toxicity. (Not the single-dose Neulasta nor Neulasta OnPro, which I believe begins self-dosing 24hrs afterward). I'm sure factors, many pragmatic, went into her decision. EGs: patient adherence and ability for self-injections.
I was lab-tested each week (twice/trtmnt) for ANC and further dialed-in the dosages myself to limit the shots based on my own regression analysis/trend-line of ANC numbers. (Onc prescribed 5/trtmnt but I got by w/2 or 3)

My comments are wordy, but for those who stumble into this, As an amateur cyclist, I wanted to reasonably minimize issues that could potentially effect my cycling. [My Onc was more concerned about curing my condition and not in my competitive ability afterward] Fortunately my interim PET was favorable and BLEO was removed after 2nd cycle of 6.

Per my baseline PFT (before initial trtmnt) and PFT, 3mths post trtmnt, my lung function IMPROVED 5%???  (I am competitive & became better at "performing" the PFT test rather than my lung function actually improving).

Sidenote about "Lance A. pro cyclist" and his treatment for Stg 3 embryonic testicular cancer. Protocol for his disease was BEP (bleomycin, etoposide, cisplatin) but he received only a single trtmnt w/Bleo. (most certainly due to the potential pulmonary side-effects). After that intial trtmnt, his doctors changed his regimen to VIP (etoposide, ifosfamide, cisplatin) 12wks.

Max, when I began treatment April 2017,  I gained insight from yours (and other members) posts in this forum. TU

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3154
Joined: May 2012

two wheels and others,

For readers who may not know, the reference to Lance is to Lance Armstrong, the cycling champion.

Per reports, Lance had testicular cancer years ago, metastatic to the brain. Bleomycin was part of his recommended regimin, but he refused the Bleo about half way through his chemo cycles, given its propensity to damage the lungs.  Last I read, he is cancer free.  This info is all on his Wiki article.

Bleomycin is a component of ABVD and some other combinations.  By itself (with no additional damage caused by other drugs) Bleomycin causes lung toxicity in 10-15% of all users, and fibrosis in 1-2%.  About 1% of these cases result in death.

Bleomycin is not a component in EPOCH, CHOP, or most other NHL combinations.  It is mostly used against HL and a variety of organ cancers (ovarian, testicular, some others), and is regarded as extremely effective as a cancer fighter, and is listed as a World Health Organization (WHO) critical drug (a drug most necessary to ensure world health).

A city close to me (Greenville, SC) is home to Lance's former team partner, George Hincapie. His attire business is based there. We hear occasionally that Lance is visiting the area.  Greenville is a popular site for nationwide mountain competitions among cyclist also.

max

 

twowheels's picture
twowheels
Posts: 13
Joined: Jun 2017

You have to work thru the logic on this conclusion.  (And as I mentioned previously, my MDA teaching Hematology/Onc "advises" this protocol - granix/pergrastin amplifies the side-effects of bleo and why she prescribes Neupogen which does not remain in your system as long as Neulasta. She also delays shot until 96hrs after each trtmnt.

As Max noted: These comments are separate from the main theme and specific to A"B"VD, not R-CHOP nor EPOCH which does not contain Bleomycin.

https://www.ncbi.nlm.nih.gov/pubmed/27797602

CONCLUSION:

Our findings demonstrate that bleomycin promotes endothelial-mediated inflammation and neutrophil adhesion. These mechanisms may contribute to the development of pulmonary fibrosis by supporting immune cell recruitment in the lungs.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3154
Joined: May 2012

madrasius,

Neulasta commonly causes bone pain, but especially in patients with arthritis or fractures.  The day after my first injection I almost required hospitalization from the pain, a spot in my back that had been broken years earlier.  My oncologist decided to half my dose (reduce it by 50%).  With some pain meds to go along with it, future shots were not difficult. Neulasta is technically called a "colony stimulator." It hurts specifically in the bones because it jump starts the bone marrow into churning out stem cells that become white blood cells.

My WBC counts stayed normal to above normal, with just the half dosing.

If EPOCH is her chemo, then it is what was judged as probably most suitable and effective for her cancer particulars.  It would be better to find a work-around for the neulasta than change on the EPOCH this early on.  Numerous chemo drugs commonly used against Lymphomas cause low WBC, which can be a very dangerous situation.

max

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3154
Joined: May 2012

Thanks for the additonal information, twowheels.  If I were to ever relapse I would definitely have to rule out any reuse of Bleo, but it is good for future ABVD people to see this report.

If I did not mention it above, Bleo is also used for pleural effusion (fluid buildup in the chest), but people getting it for that reason would not be also getting a WBC colony stimulator anyway.

max

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