[DCase]

Rookie needing feedback

by DCase on Wed Dec 03, 2014 12:42 am

I am one of three children and numerous family members involved in my dad's new battle with multiple myeloma. In this introduction I may be slightly off on dates, time span etc but I will try my best to recall the many details.

My dad is a 61 year old white male who has battled bladder cancer (which has been under control or basically dormant for quite a long time) for approx 14 years with chemo being given initially and tumors removed from the inside of his bladder numerous times.

About 6 years ago, a single cancerous polyp was discovered in his lower colon (rectal area) that resulted in a colon resection and he has since had no recurrence pertaining to colon cancer.

In October 2013, he was first diagnosed with his third primary cancer, multiple myeloma. Initially, he received Velcade IV treatment with dexamethasone on a particular regimen / schedule. With only 1-2 cycles of treatment (3-6 weeks) he achieved remission. He suffered moderate to severe lower extremity neuropathy accompanied by slight weakness and fatigue from the Velcade. His oncologist set him up to visit MD Anderson in Houston, treatment where he was informed in detail about an ASCT and went through many tests to ensure he was in good enough health for the procedure. All the while, he continued to take the dexamethasone.

He refused to go straight into the ASCT because he was in remission, Houston was hours away, and we all hoped the newer drug Revlimid (given as a maintenance drug after the ASCT any way) would keep the myeloma at bay by itself. While still in remission, we decided to have stem cells harvested at The University of Mississippi Medical Center (we live in MS) in July 2014. In making this decision, we knew the myeloma would return and we wanted to be prepared for an ASCT when needed.

Immediately following the stem cell production injections and the harvesting, his myeloma returned to the tune of 9000+. Because of this, it made me question if stimulating the production of stem cells for harvesting contributed to the rapid myeloma return. According to the numerous oncologists we've asked, in no way could that process have resulted in the myeloma returning the way it did, but I'm suspicious of it myself.

After the relapse, he continued with the dexamethasone and added 25 mg of Revlimid. It didn't take long before he was experiencing extreme fatigue, weakness, and sleepiness. I believe he took 1-2 cycles of the Revlimid. His cancer counts were falling, but not fast enough, so Velcade IM treatment was added. During this time he was unable to hardly stand at all and couldn't stay awake for ten minutes at a time. He became pale and basically looked like death. His oncologist decided to remove Revlimid from the regimen and replace it with thalidomide.

He started with 200 mg thalidomide and continued with the dexamethasone and IM Velcade. At some point between starting the Revlimid and continuing until today, it has been a weekly ritual of getting units of packed RBCs and/or platelets, once or maybe even twice a week, due to anemia, hemoglobin ranging from 6 to 8, and platelet counts ranging from 18-35 in most cases. His energy level is zero, fatigued to the max, and doesn't have the strength to stand or walk by himself. He was hospitalized after 1 cycle of thalidomide for a minor GI bleed that was contributed to low platelet count and known internal hemorrhoids confirmed by endoscopy and colonoscopy that followed.

Due to the side effects, oncologist decided to reduce his thalidomide to 200 mg every other day (essentially 100 mg per day). Two or three weeks after this change, one Saturday he became really confused and fell into a sedated state and could not be woken up. He was taken into the hospital once again. Days later he was discharged to a hemo / oncologist at UMC who suggested stopping all treatment and took another bone marrow biopsy to reevaluate the situation. The oncologist wants to determine the cause of all the issues, especially the unresolving low blood counts -- i.e., determine if it's

1) The myeloma
2) The chemo / meds, OR
3) Dysplasia.

The goal since the relapse has been getting back to remission in preparation for the ASCT, but his myeloma counts have only decreased to 3000, the best I've known of here recently.

After the sedated episode we stopped administering the thalidomide but some of the confusion pops up from time to time in the last couple weeks since then. His energy, fatigue, sleepiness, and weakness have not improved very much at all.

Just two days ago, he was taken to the ER because of excessive coughing, some wheezing, slight SOB, and intermittent nose bleeds . We feared the start of pneumonia and didn't want to take any chances. He has been admitted for IV antibiotics and received a unit of platelets. The latest concern, which has risen just today, is that he may be experiencing Disseminated Intravascular Coagulation. To combat it they are planning to infuse frozen plasma in hopes it will "reboost" his plasma or help his "confused" plasma to work correctly. He also was believed to have experienced / be experiencing exacerbated COPD. His mild COPD has never been an issue before — it normally doesn't even require inhalers to be used.

I understood a few weeks ago his oncologist to believe he was becoming resistant to the Velcade. The side effects of the Revlimid and thalidomide have been pretty harsh and I'm not sure what options are left other than lower doses of the chemo drugs to hopefully get him closer to remission. Our goal has been shooting for the ASCT but there have been so many hurdles and complications along the way.

I would highly appreciate any feedback or information that could help us in this situation.

[Nancy Shamanna]

Re: Rookie needing feedback

by Nancy Shamanna on Wed Dec 03, 2014 11:42 am

Hi DCase,

I am really sorry to read about what your father is going through with the myeloma, and I hope that he can get back on track with his treatments and make a recovery from all of this.

When you say that his myeloma counts were 9000 and have decreased to 3000, are you referring to serum free light chains?

If you could give more information about what sort of myeloma it is (eg. kappa, gamma) and what any results were of FISH testing, or other chromosomal testing done on a BMB to determine the type of chromosomal risk for him, it could help for others to comment also.

Best wishes to you and your family.

[DCase]

Re: Rookie needing feedback

by DCase on Wed Dec 03, 2014 1:32 pm

Thanks so much for your reply!

The numbers I'm referring to are his M-spike value, as I understand it. His general oncologist always explains to us pertaining to his M-spike as the main component he looks at concerning his myeloma.

We have not gotten into the specific details such as his chromosomal abnormalities or myeloma type (kappa, gamma) as of yet. Although he did have the bone biopsy done a week ago and we are waiting on the result of that. I believe they are also doing the FISH testing, etc. We just haven't received the results, but they should be in today.

I will update as soon as we find out more.

[lys2012]

Re: Rookie needing feedback

by lys2012 on Wed Dec 03, 2014 9:10 pm

Hi I'm sorry to hear about the rough go your dad is dealing with.

I agree the numbers you are posting are a bit confusing. Can you ask for a copy of the blood work and post the numbers and ranges?

Numbers in the the thousands seem to me like it may be his IgG or IgA (two different immuno­globulins), which are different types of myeloma.

M-spike is often a number in between 0 and 10 in the US, and 0 and 100 in Canada.

[Dr. Edward Libby]

Re: Rookie needing feedback

by Dr. Edward Libby on Thu Dec 04, 2014 2:02 am

Hello DCase,

One of the most important things I take into account in myeloma patients is their age. Your father is a "young" myeloma patient because the average age is 70 for the diagnosis of myeloma. Young patients with myeloma tend to do better than the average patient (e.g. 70+). Your father has been through a lot, though, for someone his age, given his previous diagnoses of bladder cancer and colon cancer.

Yes, a stem cell transplant is an important treatment modality for myeloma, but hematologist / oncologists must always keep "quality of life" in mind. If our treatments are compromising a patient's ability to live a fairly normal life, we need to consider if we are using the right therapy.

Thalidomide has a "bad" reputation for causing severe fatigue, severe constipation, and severe neuropathy. Perhaps it is not the best drug for your father, and/or the dose should be reduced. Since he has not had a bone marrow biopsy for roughly a year, it will be valuable to determine exactly where his myeloma is.

Thalidomide is less likely to cause low blood counts than lenalidomide (Revlimid), but it could be the culprit, or the Velcade could be the culprit. I often use bone marrow stimulating agents like erythro­poetin (Procrit) or Neupogen / Neulasta in my patients who have low blood counts during treatment. These drugs can help patients to get through the chemotherapy with fewer transfusions and infections.

Fortunately there are treatment options for your father such as:

1. pomalidomide (Pomalyst, Imnovid)
2. Carfilzomib (Kyprolis)
3. Research studies
4. Numerous other drugs like Doxil, bendamustine (Treanda), melphalan by mouth, cyclophosphamide, etc.

As powerful and effective as a stem cell transplant can be, it may not be the right thing for your father right now. It sounds like we need to find a drug combination that works and is physically tolerable. He is fortunate to have MD Anderson as a consultant center. The physicians there are leaders in the treatment of multiple myeloma. Has the oncologist in Mississippi reviewed the current plan and questions with his consulting myeloma doctor at MD Anderson?

Your dad is fortunate to have someone like you to investigate and learn about his disease. We are happy to help you in any way we can at the Myeloma Beacon.

[DCase]

Re: Rookie needing feedback

by DCase on Thu Dec 04, 2014 10:50 am

Thanks so much for the concerns, replies, and information.

I can't answer some of the questions others may have about the details but here is what we found out yesterday: bone marrow biopsy shows 100% myeloma and he is also in disseminated intravascular coagulation (DIC). He's receiving chryo and plasma for the DIC right now.

The plan is to start a PICC line and start a very strong chemo in attempt to control or stop the myeloma - about 2 weeks worth of IV chemo (chemo is not melphalan). IF that works or he survives, the next step is possibly the ASCT.

Also, he's gonna have an echo done to ensure his heart can tolerate the chemo. He has never had any cardio issues (chronic heart failure, hypertension, etc.).

Has anyone ever actually survived the 100% myeloma, chemo, DIC situation??

[Dr. James Hoffman]

Re: Rookie needing feedback

by Dr. James Hoffman on Fri Dec 05, 2014 10:49 am

So sorry to hear how sick your father has been. People can do ok with a marrow very full of myeloma cells, but having little bone marrow reserve does increase the risk of complications. It sounds like he may be planned for a regimen like VD-PACE, an aggressive combination of chemotherapy medications. This would not be 2 weeks of treatment, but he absolutely may take that long to recover some decent blood counts. The DIC is also an important consideration, and details are important. If it is the myeloma provoking the DIC, it will hopefully improve with therapy.

I probably would try to incorporate some of the newer drugs after a cycle (or 2 or 3) of inpatient chemo – perhaps Kyprolis (carfilzomib) and Pomalyst (pomalidomide) in combination – but, in complicated cases like his, the doctors monitoring him will need to make such decisions in real time.

Hope this helps.