[Sister In Law]

Horrible edema, weeping feet

by Sister In Law on Wed Dec 16, 2015 10:24 pm

My husband's myeloma would be classified as smoldering, yet he has had just horrible symptoms and very bizarre issues since the beginning of this ordeal.

First was the neuropathy and extreme fatigue. Nausea, low-blood pressure, intestines and stomach that did not work. After five or six months, the doctors figured out that he had 30% cancer in bone marrow and smoldering myeloma. By that time, he had lost 45 lbs and his muscles have been wasting away all this time.

He had three Velcade treatments and four Cytoxan treatments (with some overlap). He had no edema to start with. Because of severe muscle weakness, he decided to try massage, but shortly afterward, his legs began to swell – and his feet are enormous.

After the first Velcade injection, he got atrial fibrillation (heart rhythm issues can be a side effect). So they put him on Coumadin (warfarin) and just cardioverted him yesterday. In the midst of all this, they added a drug called flecainide (Tambocor) to keep him in rhythm. Immediately, his feet and legs ballooned to enormous sizes and he could not pee.

They have given him massive doses of Lasix (furosemide) and nothing is working. So he decided to not take flecainide last night. He began peeing, but his legs and feet are now WEEPING droplets of moisture from the skin! It's JUST AWFUL.

The heart doctor suggested it may be because of low albumin, which allows moisture to weep from the cells into the tissue. He's extremely thirsty at times and nothing satisfies him. He is due to see the oncologist tomorrow. The heart doctor suggested a blood test to look at the albumin levels. She said that they can infuse him with albumin and then use the Lasix.

Has anyone heard of this sort of thing?

My husband is having a terrible time with this disease and yet he has a good prognosis and a case of smoldering myeloma. He has also had kidney stones in the last few weeks, too. It's been a plethora of hell!

Do other people have really weird things with this diseases, too?

We are waiting for approval with Revlimid and they are all taking their sweet time. He's not had treatment for a month now. It seems like no one cares anymore. I had to beg the cardiologist to contact his oncologist, or else I knew that if he suggested the albumin issue, it would be scoffed at. They all scoffed when I begged them to test him for amyloidosis. They tested his bone marrow, which I don't think is a good enough test for amyloidosis. I think it needs to be a fat pad biopsy. But what do I know?

[kerrirunnergirl]

Re: Horrible edema, weeping feet

by kerrirunnergirl on Thu Dec 17, 2015 9:02 am

I am so sorry this is happening to your husband.

I can speak to the albumin and furosemide. This is done often. The albumin is given to pull fluid from the extracellular space (tissue) back into the vascular system and then the furosemide will take that fluid and excrete it through the kidneys.You can have edema in your tissues but still be very much dehydrated.

How are his renal labs looking (BUN / creatinine)?

How frustrating to feel like no one cares, that no one is leading the charge. Continue to be an advocate for your husband.

Wish I could offer more information and support. You are not alone. You will be in my thoughts and prayers today. Hang in there.

kerri

[NStewart]

Re: Horrible edema, weeping feet

by NStewart on Thu Dec 17, 2015 2:46 pm

I can't offer you any suggestions of what to do or who to see or what to ask for. But I am glad that you have this forum to post to with your frustrations and concern about all that is happening to your husband. We do hear you!

As Kerri said in her post, your husband's tissues are overloaded with fluid and the only way that they can try to deal with it is to weep through the skin. Not a pleasant situation at all. I'm not familiar with the treatment for albumin overload that has been recommended. If that is tried and is successful and the swelling resolves, fantastic. If it is tried, works, but your husband still has swelling in his legs, you might ask for a PT referral for lymphedema treatment. You would need to find a PT in your area who is certified in this type of treatment. I would also make sure that the person has experience treating people with lymphedema in parts of the body other than arms and chest, common places for people who have been treated for breast cancer. I unfortunately treated people with lymphedema who had gone to a therapist who told them that the only places that developed this problem were in the arms and chest and only people with breast cancer got lymphedema.

I pray that your husband begins to get the treatment(s) that he needs to fight the myeloma, the swelling, the heart problems, etc. Keep being the assertive advocate for him that you seem to be.

All the best,
Nancy in Phila