[Melpen]

Re: Darzalex and Kyprolis Treatment

by Melpen on Sat Dec 10, 2016 4:09 pm

Hi Mr P,

In response to your question: My autologous stem cell transplant was not effective. It took me almost 8 weeks to engraft enough so that I could be released to home. It is rare for a patient to take that long, but it does happen. For six months after transplant my numbers were lowered (but not-so-great – no remission or complete response) and numbers stayed there. However, however, along with cancer being lowered, my WBC, RBC, and platelets were low too. I think the "hit" to the bone marrow made the marrow slow to produce all cells. However, I was drug-free for 6 months, and it was a nice respite.

Despite taking forever to engraft, I tolerated the transplant very well. I was not nauseous, only the day of the melphalan infusion, just one day diarrhea, and I never ran a fever. However, I had horrible pain from Neupogen shots every morning and dreaded the effect of those shots and I was in "lockdown" and away from home for what seemed like forever.

I'm not sure if you would respond to a stem cell transplant. It's a crap shoot for everyone. Is that option still on the table for you? Have you collected your stem cells?

I am starting the Darzalex this coming Wednesday the 14th. My premed list is:

• Methyl­pred­nisolone
• Tylenol (acetaminophen, paracetamol)
• Diphenhydramine (Benadryl)
• Famotidine (Pepcid)
• Acyclovir
• Baby aspirin
• Montelukast (Singulair)
• Compazine (prochlorperazine) for nausea

and then Bactrim 3 days a week. I believe he said I take the prednisolone day of and then for two days after.

I'm feeling overwhelmed with that list as right now I'm only on acyclovir and baby aspirin. Anyhow, I hope I tolerate the Darzalex as well as you have and that it knocks the cancer OUT!

I meet with orthopedic oncologist Monday. I have lytic lesion on skull in forehead and don't know if it needs radiation.

Positive note: My oncologist went to the recent ASH conference and said there are many new myeloma drugs in the pipeline. Empliciti (elotuzumab) is another monoclonal antibody that targets a different factor than Darzalex. Empliciti targets SLAMF7 and Darzalex CD38. Docs are doing clinical studies on Empliciti at the hospital I go to and I was invited to join that study. Doc said either one. I choose the Darzalex since it has FDA approval.

Don't give up hope as there are more options yet. Keep the faith. Envision cure for cancer for all.

[MrPotatohead]

Re: Darzalex and Kyprolis Treatment

by MrPotatohead on Sun Dec 11, 2016 12:19 am

Hi Melpen,

Thanks very much for sharing the details of your stem cell transplant. I am still on the fence about that, and No, I have not yet collected my stem cells.

It seems that the docs want you to get to a complete response with drugs before considering you for a stem cell procedure, and I am not there currently. Plus, I hear from some folks that it worked for them – long, durable remissions – and from others that it was a complete bust. And, like you say, it is impossible to predict what your result will be in advance.

In any case, I just finished my fourth Darzalex infusion. This time I had no infusion reaction at all. The reactions I did have from the earlier ones were minor – mild nausea and a brief spike in blood pressure.

I started Darzalex with almost the same meds they are planning for you – except for no Pepcid or Singulair.

I know that the pharmaceutical companies keep churning out new multiple myeloma drugs, but in many cases the new ones are minor tweaks of existing ones. What is lacking is more basic research on how myeloma gets started, whether there are indeed myeloma stem cells, etc. Still, the antibody drugs are a new wrinkle.

I will soon be getting tests to measure my free light chains, so I'll know shortly if my current Darzalex and Kyprolis combo is doing anything yet.

Good luck, Melpen! I hope it works gangbusters for you!

[K_Shash]

Re: Darzalex and Kyprolis Treatment

by K_Shash on Sun Dec 11, 2016 2:39 pm

It is great that you were able to tolerate the Darzalex infusion well this time.

Your test results should show a major improvement. Others have already reported significant results with Darzalex, and I am sure you will too.

All the best, Mr. P.

[MrPotatohead]

Re: Darzalex and Kyprolis Treatment

by MrPotatohead on Sun Dec 11, 2016 10:34 pm

Thanks very much, K_Shash. I really appreciate your encouraging words.

I should have my first test results shortly, and I will post them to this thread.

[Alizabeth]

Re: Darzalex and Kyprolis Treatment

by Alizabeth on Thu Dec 15, 2016 3:17 am

Thank Mr PH for posting all this info, I've been following it and all the responses with interest and wish you best of luck with this treatment.

Today my husband also started on Darzalex. We've had a rough month with various problems (heart issues and also what looks like emerging kidney issues), and he's been off treatment altogether during that time.

The Darzalex treatment went pretty well. He had a mild headache and also elevated blood pressure, on and off, during the infusion. Interestingly enough, they said he should not take his regular blood pressure medication on the day of Darzalex treatment going forward. We will have to check with the doctors about that. Other than that, all went according to plan. That was a big relief, given all the info we got about the possible side effects.

He's currently on Darzalex and dexamethasone. Kyprolis was part of his previous regimen and is a bit questionable in the context of his heart issues. So he's off that for now.

We are really hoping this treatment will work, and crossing fingers for all of you out there for successful treatment and good results!

[MrPotatohead]

Re: Darzalex and Kyprolis Treatment

by MrPotatohead on Fri Dec 16, 2016 3:40 am

Hi Alizabeth,

I understand that the first infusion of Darzalex can be the most prone to generating infusion reactions. So it's great news that your husband tolerated it so well, and bodes well for his subsequent infusions.

I wonder why they advised you to discontinue blood pressure medication on the days of treatment. I didn't get those instructions. I also experienced spikes in blood pressure that came and went.

My oncologist has had very good results with Darzalex, and is very optimistic about its effectiveness.

I hope it really helps your husband. It sounds like you and he have been through a lot.

[MrPotatohead]

Re: Darzalex and Kyprolis Treatment

by MrPotatohead on Sun Dec 18, 2016 12:24 am

Hello everyone,

I have now completed five Darzalex infusions and eight Kyprolis infusions on the new protocol, and wanted to share some results.

The most important news is that, as of December 15th, my Kappa FLC value has fallen to 1.66 mg/dL from its value of 11.3 mg/dL on November 15th, which was just before I began Darzalex.

So my current Kappa FLC result is within the normal range (0.3300-1.94 mg/dL).

My Lambda FLC value went from 0.152 mg/dL on November 15 to 0.0336 mg/dL on December 15th.

Lambda is my "uninvolved" FLC, and these values, both well below the normal range of 0.5700-2.63 mg/dL, cause my Kappa/Lambda ratio to be quite high: 74.3 on November 15th, and 49.4 on December 15th, with the normal range being 0.2600-1.65. This is likely due to myelosuppression resulting from either the Kyprolis or the Kyprolis plus the Darzalex. My oncologist advised me to "ignore" the ratio for that reason.

So the Darzalex appears to be working -- five treatments dramatically brought down my Kappa number, which had started to climb on Kyprolis alone and on Kyprolis and Pomalyst.

I will post a more complete update from my December 15th blood tests soon, but wanted to get this result out as soon as possible.

A few other results:

Hemoglobin - 10.8 g/dL on November 15th; 11 g/dL on December 15th (normal range is 14-18 g/dL)

Creatinine - 1.6 mg/dL on November 15th; 1.4 mg/dL on December 15th (normal range is 0.8-1.3 mg/dL)

Red and white blood cell counts are only slightly changed, but platelets went from 394 K/uL to 198 K/uL (normal range is 150-450 K/uL), which is likely an effect of Darzalex.

As far as side effects go, I have begun to notice increased fatigue, which seems to be a side effect of virtually all myeloma treatments.

[Rhonda]

Re: Darzalex and Kyprolis Treatment

by Rhonda on Sun Dec 18, 2016 9:59 am

That is absolutely great news! I have been anxiously waiting for your results.

Thanks again for sharing!
Rhonda

[Multibilly]

Re: Darzalex and Kyprolis Treatment

by Multibilly on Sun Dec 18, 2016 10:38 am

Cool beans!

[K_Shash]

Re: Darzalex and Kyprolis Treatment

by K_Shash on Sun Dec 18, 2016 11:09 am

Great progress, Mr. P.

And many thanks for documenting and sharing the details of your treatment.
I re-read your earlier posts, and you would have 3 more weekly Darzalex infusions left and then these infusions 'taper' down in frequency to once every 4 weeks after 19 more weeks, until progression. However, you have to continue the Kyprolis infusions indefinitely; all well worth the results!

I sincerely hope that you do not experience any 'progression' for a very long time. Hope an oral Kyprolis is available soon.