[Ed Garbarino]

Re: Mother has multiple myeloma - 6 weeks diagnosed and not

by Ed Garbarino on Wed Nov 07, 2012 11:03 am

I am a 70 year old male diagnosed with multiple myeloma In January 2012. I was quite advanced so my oncologist recommended we begin therapy immediately. Over the course of the next four months I had lost 50 pounds and had two surgeries one on each leg and hip. I know what it is not to eat and become nauseated at the sight of food. There are drugs that stimulate appetite. She needs to find what can work for her to stimulate her appetite. Is there anything that sounds good to her. I started with root beer floats. That sounded good to me so I forgot about what was most nourishing and ate root beer floats. My body needed to learn to accept food again, and it did. Your mom can't give up. She is fortunate to have you as a caregiver.

[Dr. Peter Voorhees]

Re: Mother has multiple myeloma - 6 weeks diagnosed and not

by Dr. Peter Voorhees on Thu Nov 08, 2012 6:48 am

Dear veganmartin,

A couple of comments:

1) the nausea, loss of appetite and weight loss are likely due to several factors. Kidney failure in and of itself can do this. Side effects from pain medications for treatment of painful bone lesions. Advanced myeloma in and of itself can cause loss of appetite and weight loss. The chemotherapy used to treat the myeloma. And lastly, depression can certainly do this. It is critical that each and every one of these possibilities is explored and addressed thoroughly. Consultation with a nutritionist/dietician and a psychiatrist with expertise in cancer patients would be useful. Has she started chemotherapy? If so, with what regimen? Since she is ~8 weeks into this, have they rechecked the myeloma labs to see if she is responding to treatment?
2) while a diagnosis of myeloma can be fairly obvious by blood work, x-rays, etc, a bone marrow biopsy is usually offered to confirm the diagnosis. Addiional tests can be performed on the biopsy that can help estimate prognosis as well.
3) Roswell-Park would be a great place to see someone who specializes in myeloma.
4) 67 is not too old for transplant, I agree. However, transplant in the setting of dialysis-dependent kidney failure would not be a good idea. Additionally, many of the issues she is grappling with now (nausea, loss of appetite, weight loss) would be significantly worsened in the immediate period with such an approach. I would only consider this if her kidney function improves as well as her overall level of functioning.

I am sorry things are not going well. Let us know if there is anything else we can do to help.

Take care!

Pete V.

[veganmartin]

Re: Mother has multiple myeloma - 6 weeks diagnosed and not

by veganmartin on Tue Nov 27, 2012 10:08 pm

Thank you all for your responses. Thank you so VERY much. I've been absent for some time to the forum b/c as of this Thursday, my mother has been in the hospital for 3 weeks. Her BP was extremely low, she couldn't take in any food/liquids and was very confused. She was in septic shock and she was rushed by ambulance to the hospital. Her ECG showed a small AMI, but they do an Echo and it came up clear, so we're good there. They Dx her w/ gram negative klebsiella pneumonia and osteomylitis (which, has been untreated for several months, as that is exactly where her pain started in August). She's on IV antibiotics, (has a PICC line in for that delivery) and getting dialysis in the hospital 3 times/week. I work at the hospital, so I'm able to check on her and ensure she's getting what she needs. Her sisters that live in Florida flew up (one prior to her admission to the hospital and the other one a few days after she was admitted). It really is a miracle that she pulled through the sepsis and pneumonia. She has been off the cancer drugs (Revlimid and Dexamethosone) just over 2 weeks now (after the Dx of the pneumonia, they DC'ed those b/c she didn't need her immune system to be any weaker. We did get approval from her oncologist to start My Community Mushroom Supplement Blend, just so we are able to give her something while she's on the antibiotics. The researcher in me would have loved to get a baseline prior to the start of the supplements to see if they're doing a better job of controlling the multiple myeloma compared to the Revlimid/Dexa. Also, she had a terrible rash from head/toe and it has completely gone away now that she's not on the Revlimid/Dexa combo. She has had two MRIs to diagnose and decide on treatment for the osteomylitis. They may need to do surgical debridement, but we're hoping that they don't have to go to that extreme. If they decide not to do the surgery, she is going down to the medical rehab unit in the hospital. There, she will get intensive PT/OT and can get her dialysis (the dialysis is on the same floor as the rehab unit). There is also a dedicated physician to the unit and 24/7 nursing care. It's where she needs to be to get her strength back up. Her PMD did prescribe an antidepressant, so I'm thinking that may be why she is now willing to eat a bit more. Plus, she's on dialysis and her head is more clear now. I think also having all of our support and her sisters there to help her 12+hours a day has really changed things for the better. I did request her to be seen at Roswell, but that's on hold until after she's discharged. I'll post an update as soon as I know more

[veganmartin]

Re: Mother has multiple myeloma - 6 weeks diagnosed and not

by veganmartin on Tue Jan 01, 2013 9:32 pm

Mom is home from the hospital now after being in since 11/8. She was discharged from the medical rehab unit in the hospital on 12/21 and went back for an overnight (GI bleed, but it turned out to be internal hemorrhoids). She has daily nursing care and is going to outpatient dialysis 3x/week. She is eating a bit better but still very weak. She is unable to move independently, but she is able to walk with a walker for a few steps with assistance (my 2 aunts from Florida have moved in with my father and are helping). My father built a wheelchair ramp on the front of the house and we are all pretty well exhausted from the past few months. Again, she was only diagnosed in early September (2012). She hasn't received any treatments (Revlimid and Dexa was D/Ced in the hospital due to sepsis) since 11/10, but we have the paperwork into Roswell Park Cancer Institute here in Buffalo to get her into the multiple myeloma specialists. I'll be calling her oncologist that she was seeing tomorrow to ensure he has sent them her records.

My biggest concerns are - without any treatment for almost 2 months, has the myeloma probably gone wild in her body? Will she gain her strength back (she was diagnosed as stage 3)? We haven't seen any blood work - her oncologist did see her in the hospital and he did order all of the regular blood labs in the hospital but didn't share them with us, even though we requested multiple times - so we're not sure how bad things are.

I doubt they'll put her back on Rev/Dexa. She had some terrible side effects (head-toe rash, severe nausea and anorexia that didn't respond to any meds).

I'm having terrible nightmares every night that she is dying.

Thank you...

[Nancy Shamanna]

Re: Mother has multiple myeloma - 6 weeks diagnosed and not

by Nancy Shamanna on Wed Jan 02, 2013 11:06 am

Hi Veganmartin, I am sorry to hear that your mother is having such an awful struggle with myeloma. It's good to know that she will soon be able to consult with myeloma specialists though. If you are trying to get a copy of her medical tests, could you ask your family practice doctor? Often, reports from specialists are cc'd over to the family doc. If so, he/she could review them with you. Hope this helps. Good luck to all of you, and please keep us posted too.

[veganmartin]

Re: Mother has multiple myeloma - 6 weeks diagnosed and not

by veganmartin on Wed Jan 02, 2013 8:33 pm

Thank you for the reply, Nancy. I didn't think about asking her PMD if they rec'd the labs that were taken by the oncologist group while she was in the hospital. I'm planning on requesting her entire medical record from the hospital since she's been discharged, b/c I'm sure the new oncologist at Roswell will want to see everything that was done. If it seems to be taking longer than expected, I will ask her PMD if they rec'd them. Thanks so much!

[Dr. Ken Shain]

Re: Mother has multiple myeloma - 6 weeks diagnosed and not

by Dr. Ken Shain on Fri Jan 04, 2013 8:13 pm

I am sorry to hear that your mom continues to struggle with myeloma and therapy. Hopefully, you will have a new and improved plan worked out for you at Roswell Park in the very near future that will safely and successfully treat your mom. They will also likely restage/assess her disease status there. However, it is important to collect what data you can regarding her status as well as summaries of what she has gone through. We wish your mom, you, and your family good will.

[veganmartin]

Re: Mother has multiple myeloma - 6 weeks diagnosed and not

by veganmartin on Mon Jan 07, 2013 9:31 pm

Thank you, Dr. Ken . That's a good point on keeping all of the records. Since they will, no doubt, do things differently at Roswell it will be like starting from scratch with a fresh set of eyes. In the short 2 months that she has been off Revlimid/Dexa, per her three MRIs while in the hospital, it appears as though the multiple myeloma has really spread all throughout her spine - her neurosurgeon read the reports and looked at her films for me and he said there is nothing surgically he can do for her at this point - a pain pump would be her only option and he said she has to be in a tremendous amount of pain. That really worries me that it has spread everywhere in her body/bones. Without having any lab work for us to review while she was hospitalized, I have no way of knowing. But, we've requested all those hospital records be sent to Roswell ASAP - so I'm sure the new multiple myeloma specialists that see her can explain the findings. I am not sure if I mentioned this - but I got engaged 2 weeks before she was diagnosed this September and have been putting off the wedding plans and now we're thinking of pushing them up so that if she takes a turn for the worse, that she can be at the wedding. My father wants to dance with her at our wedding. It just breaks my heart to see her like this and the waiting has been sheer torture. Especially now, knowing she hasn't had treatment in two months and trying to get her into Roswell. Terrified of what they're going to tell her/us. Thank you all of your support.

[veganmartin]

Re: Mother has multiple myeloma - 6 weeks diagnosed and not

by veganmartin on Sun Feb 10, 2013 10:29 am

Hi everyone. Wanted to do an update. My mother has been back in the hospital for going on 4 weeks now. Recurrent C. Diff (severe dehydration that led to very low BP / high heart rate). She's even weaker now and all the progress she made during acute rehab after her last 1.5 mo. hospitalization she's lost. They want her to go to rehab b/c she's so deconditioned, but she just wants to be home and we're going on 4 months now w/o any cancer treatments. So, we're going to get her home (with nursing services) and my two aunts from Florida are still here and will help my father in working with her, along with the in-house PT services, to get her strong again and up and moving around. We've started having the hospital puree her food and she is eating a bit better now. They are talking of a discharge early this week.

[Nancy Shamanna]

Re: Mother has multiple myeloma - 6 weeks diagnosed and not

by Nancy Shamanna on Mon Feb 11, 2013 10:44 am

Hi Veganmartin, Thanks for the update. I hope that your rmother gets stronger with all the medical and family support. Take good care of yourselves, our thoughts and prayers are with you.