[melissaanne]

Now I'm my caregiver's caregiver...

by melissaanne on Thu Oct 01, 2015 1:05 am

Hello, all-

I am new to the group but I have been quietly looking to these pages for some hope since my mom was diagnosed with a solitary plasmacytoma on the spine in September of 2015. Of course, the initial finding was quite scary as her doctor suspected this could be metastatic cancer.

A little history ... She began experiencing back pain (6 months) which led to an MRI where a tumor was found on the T7 vertebrae. From there, she was rushed into emergency surgery to remove the tumor as it was impinging on her spinal cord. The tumor was removed during surgery to repair her T7 vertebrae (which has completely collapsed) and sent to pathology. The results showed a solitary plasmacytoma with possibility of multiple myeloma pending further testing.

So far, she has no definitive signs of multiple myeloma, which is such a blessing. She is an otherwise healthy 49 year old woman whom I love dearly! My hope is to get some insight into her labs. She lives in Anchorage, Alaska and there is no myeloma specialist in the state. She is currently under the care of a general oncologist but I want to be sure she is getting the best care. She's taken care of me for 27 years and now it's my turn.

Her current lab values as of September 2015:

M-Spike (serum): 0.3g/dl (thought to be due to the plasmacytoma itself)
M-Spike (urine): None detected

Bone Survey: No evidence of lytic or blastic lesions; no radiographic evidence of multiple myeloma
Bone Marrow Biopsy: No monoclonal plasma cells, 5% total plasma cells

FISH: Normal

Kappa Light Chain: 2.30 mg/dl
Lambda Light Chain: 0.98 mg/dl
Kappa/Lambda Ratio: 2.30

Comments on labs stated: monoclonal IgG kappa

Lactate dehydrogenase: 142 U/L (ref range: 140-271 U/L)
Slight normocytic anemia (thought to be due to surgery):
- WBC: 4.0 (L)
- RBC: 3.56 (L)
- Hemoglobin: 9.6 (L)
- Hematocrit: 30.9 (L)
- MCV: 10.7 (normal ... indicating normocytic anemia)
No hypercalcemia
No renal impairment

Her current treatment as of September 2015:

Tumor resection and spinal fusion Aug 29, 2015
Local radiation (T6-T8) began Sep 30, 2015 (25 sessions at 45g per session)

Any insight you have would be much appreciated. I am not sure if she will be able to get to a specialist anytime soon due to living in Alaska. However, I live in Denver, Colorado and I would be willing to go see a specialist on her behalf if that's something they would be open to.

I just want to make sure I understand the above labs to the best of my ability so that we can make the right decisions for her moving forward. So far, we have been pleased with her results.

Thank you in advance for all your help and support!
Melissa

[Little Monkey]

Re: Now I'm my caregiver's caregiver...

by Little Monkey on Thu Oct 01, 2015 7:27 am

I went through much of the same in March of this year. I remember being in the hospital with my dad when the two otho residents came to tell us they were 90% sure it was cancer.

How open would your mom be to moving down to Colorado?

Your mom's kappa/lambda ratio is slightly concerning, enough that I suggest she see a myeloma specialist for a consult at least. The closest myeloma specialist to your mom would be in Vancouver, BC, or Seattle, WA.

[melissaanne]

Re: Now I'm my caregiver's caregiver...

by melissaanne on Thu Oct 01, 2015 1:32 pm

Thank you! I agree her ratio is a bit concerning. However, her oncologist believes this ratio may normalize following radiation for the SBP.

If you don't mind me asking, did your father have surgery or radiation? How has he been doing since? I have thought about her moving but as of now that isn't an option for her. She and her husband have two kiddos under age 12 and right now aren't in the position to move.

However, I am still searching for answers!
Thank you!

[Little Monkey]

Re: Now I'm my caregiver's caregiver...

by Little Monkey on Thu Oct 01, 2015 2:51 pm

Both surgery and radiation; within a few hours of his MRI, he was told to report to the nearest hospital, at the hospital they put an urgent call the Ministry of Health, who in turn contacted four trauma centres within 60mi/100km of us (that is how it works in Ontario) a few hours later he was taken by ambulance to the trauma centre which said yes first for urgent spinal surgery; 48 hours later he had a 5 hour surgery to remove the SBP and stabilize with titanium rods.

After a week in the trauma centre, he was sent home; about a month after that, he went through 5 weeks of radiation at our local hospital.

Feel free to ask whatever question you want in this forum about SBP/multiple myeloma; I would recomend your mom see an multiple myeloma specialist in person, even it it just to give the local hemotologist some direction on how to proceed.

The problem with Alaska is they lack any real tertiary medical centre comparable to Harbourview in Seattle or Vancouver General or University of Alberta Hospital.

[melissaanne]

Re: Now I'm my caregiver's caregiver...

by melissaanne on Thu Oct 01, 2015 4:11 pm

Thanks for the input. Sounds like a similar situation. Is he just on a watch and wait protocol now? Looking for any advances in his condition? That's basically what my mom will be on following radiation. We hope!

[Little Monkey]

Re: Now I'm my caregiver's caregiver...

by Little Monkey on Thu Oct 01, 2015 5:28 pm

It's quite likely my dad's condition as become non-secretory multiple myeloma and will likely be treated with a chemotherapy regimen of CyBorD.

[NStewart]

Re: Now I'm my caregiver's caregiver...

by NStewart on Fri Oct 02, 2015 12:19 pm

The other thing that is concerning is the hemoglobin level of 9.6. The low range of normal for a woman is 12.0. So your mother's level of 9.6 is quite low. Has the oncologist remarked on that? When mine drops below 10 I receive an injection of Neupogen which seems to help to bring the hemoglobin level up. Often when the hemoglobin drops below 9.0 doctors will do a blood transfusion to raise the level.

Your mother really should see a myeloma specialist as Little Monkey advises. A specialist can work with your mother's local oncologist to help guide treatment. This way your mother wouldn't need to travel to see the specialist after the initial visit except when her condition changes. Most specialists and local oncologists are open to this type of arrangement. The advantage of this type of relationship is that your mother's treatment will be guided by an oncologist who only treats people with myeloma and is up to date with the latest research and up to date treatment regimens.

I hope that your mother responds well to her radiation and the spine becomes stable. All the best to your mother and you,

Nancy in Phila

[Edna]

Re: Now I'm my caregiver's caregiver...

by Edna on Sat Oct 03, 2015 5:16 am

I do not know how individual centres / treating oncologists in USA / Canada decide when a blood result is so low that intervention is needed. Although your mother's haemoglobin level is on the low side, we do not know what it was before the 'panel' testing. If she had no symptoms e.g. of tiredness, then some centers might not give invasive treatment straight away but would monitor to watch to see that the values do not fall below a set level, when intervention would be necessary

As to Neupogen injections mentioned by Nancy, these promote stem cell production temporarily whilst the body is recovering from a procedure / treatment and blood counts are lower than desired. Different centres may have different intervention regimes to deal with low blood count values.

I hope you can find a suitable centre / myeloma oncologist.to discuss your mother's situation, even if to gain peace of mind.

Edna

[Lev]

Re: Now I'm my caregiver's caregiver...

by Lev on Sat Oct 03, 2015 10:25 pm

NStewart wrote:

The other thing that is concerning is the hemoglobin level of 9.6. The low range of normal for a woman is 12.0. So your mother's level of 9.6 is quite low. Has the oncologist remarked on that? When mine drops below 10 I receive an injection of Neupogen which seems to help to bring the hemoglobin level up. Often when the hemoglobin drops below 9.0 doctors will do a blood transfusion ...

I wonder if we have different ways of measuring hemoglobin in Europe compared to the US.

Here the official threshold for grown up men is 8.3-10.5 and for women it is 7.3-10.5

Voksne ≥ 18 år
Mænd: 8,3 - 10,5 mmol/L
Kvinder: 7,3 - 9,5 mmol/L

[Edna]

Re: Now I'm my caregiver's caregiver...

by Edna on Sun Oct 04, 2015 3:18 am

Lev

There may be different lab tests with their own slightly differing ranges for normal Hb values from that lab. Your stated normal range is much lower than I have seen quoted here. That is why I think it is always good to get your doctor to do the testing at their own lab for consistency.