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@mehz4802

Posts: 2
Joined: Jul 27, 2016

Multiple Myeloma

Posted by @mehz4802, Jul 27, 2016

I was diagnosed after a bone marrow biopsy as having indolent myeloma 4 years ago. My oncologist says I now have multiple myeloma. I have not been receiving any kind of treatment, just blood tests every 4 mo. followed up by an office visit. The doctor prescribed some iron pills. A friend of mine also has multiple myeloma. She started taking calcium pills and her doctor is seeing some good results. I started taking calcium/vitamin D3 supplements. My primary care doctor diagnosed me with osteopenia (as well as high blood pressure and high cholesterol). My oncologist says that as long as he’s not worried, I should not be worried. But I keep feeling like there must be something that I can do to improve my situation.

REPLY

Thanks for joining the MM group @user_ch3a1e07f. We look forward to getting to know more about you. Would you like to start by telling the group the type of treatment and follow-up you’ve had. What conerns do you have and what gives you joy?

@ozys

I want to stay in the Multiple Myeloma Group also, need to hear how other patients are doing and anything new that they might be experiencing. The caregiver page is alright,
also, ozys

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You can definitely take part in both groups @ozys.

@mamaellie

Hi,

I have mm. Was identified 1 1/2 years ago. I responded very well to velcade, dex and rev, And although I have been in near remission, lambda 24 and kappa ,61 and no presence of monoclonal light chains in urine for 10 months, the progression of lesions has not stopped. I have had numerous side effects. : adrenal gland insufficiency, skin that is like tissue paper requiring visits to the Wound Clinic , constant discomfort and pain, more lesions requiring radiation,etc.
My motto is “this cancer is one that keeps on giving”.

I live in a MAJOR city and am not shy about changing docs. I am ‘fairly informed’ and belong to a marvelous support group. I am sorry I sound like Debbie Downer, but this cancer is a true pain BUT I am alive and a survivor.

That’s all folks

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@mamaellie, no need to apologize. We all need a place where we can talk about the realities of cancer without judgement or fear of being a Debbie Downer.

Do you get good wound care? What extra precautions do you take with such fragile skin? I’d be interesred in hearimg what tactics others use.

@mamaellie

Hi,

I have mm. Was identified 1 1/2 years ago. I responded very well to velcade, dex and rev, And although I have been in near remission, lambda 24 and kappa ,61 and no presence of monoclonal light chains in urine for 10 months, the progression of lesions has not stopped. I have had numerous side effects. : adrenal gland insufficiency, skin that is like tissue paper requiring visits to the Wound Clinic , constant discomfort and pain, more lesions requiring radiation,etc.
My motto is “this cancer is one that keeps on giving”.

I live in a MAJOR city and am not shy about changing docs. I am ‘fairly informed’ and belong to a marvelous support group. I am sorry I sound like Debbie Downer, but this cancer is a true pain BUT I am alive and a survivor.

That’s all folks

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Hi,

I get excellent wound care. Had no idea there was such a service prior to my experiences. The only extra precautions I take is to stand further back from my car door when I am opening it. I have learned how dangerous Kraft cheese bags can be. I have also learned not to take produce containers for granted. All my wounds have been caused by the least expected things except for last week my dog, who was resting with me on the couch, for some reason was startled and jumped off the couch. She got me with her hind foot and put a deep gouge into my calf. Now that would have been expected no matter who was there. The bleeding was a lot and took 20 minutes to get under control. Went to the Immediate Care Clinic because I had never dealt with an injury like that before and I had to ensure it was cleaned properly to prevent infection. I was put on anti biotics for a week and sent to the wound Care clinic for follow up. This has been going on for over a year and I have learned what to do to care for myself after the many visits I had last June – October at the wound care clinic. I never would have thought that the dex would cause such problems.
My skin opens so easily, I carry a first Aide Kit in the car. MM Just keeps on giving.

That is why these forums are so important. The docs do not tell us everything and sometimes they might not even know this is a side effect.

Ellen

@mamaellie

Hi,

I have mm. Was identified 1 1/2 years ago. I responded very well to velcade, dex and rev, And although I have been in near remission, lambda 24 and kappa ,61 and no presence of monoclonal light chains in urine for 10 months, the progression of lesions has not stopped. I have had numerous side effects. : adrenal gland insufficiency, skin that is like tissue paper requiring visits to the Wound Clinic , constant discomfort and pain, more lesions requiring radiation,etc.
My motto is “this cancer is one that keeps on giving”.

I live in a MAJOR city and am not shy about changing docs. I am ‘fairly informed’ and belong to a marvelous support group. I am sorry I sound like Debbie Downer, but this cancer is a true pain BUT I am alive and a survivor.

That’s all folks

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I agree that this kind of patient experience information is exactly why forums like Mayo Clinic Connect are so important. Wound care is a big topic of education among healthcare professionals. Entire conferences are dedicated to the subject. But as laymen, we tend to think of wound in the military sense – a wounded soldier – and images of battle injuries come to mind.

Ellen, I really appreciate your detailed response how the side effect of multiple myeloma of thin skin has affected you, and how protecting against skin injury is a constant in your day-to-day routine.

I wonder if anyone else in this MM group is dealing with this as well.

@mamaellie

Hi,

I have mm. Was identified 1 1/2 years ago. I responded very well to velcade, dex and rev, And although I have been in near remission, lambda 24 and kappa ,61 and no presence of monoclonal light chains in urine for 10 months, the progression of lesions has not stopped. I have had numerous side effects. : adrenal gland insufficiency, skin that is like tissue paper requiring visits to the Wound Clinic , constant discomfort and pain, more lesions requiring radiation,etc.
My motto is “this cancer is one that keeps on giving”.

I live in a MAJOR city and am not shy about changing docs. I am ‘fairly informed’ and belong to a marvelous support group. I am sorry I sound like Debbie Downer, but this cancer is a true pain BUT I am alive and a survivor.

That’s all folks

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OMG, mamaellie, you have one of the most complicated diseases in that the remedy is hard to take and the dex makes
invested in J & J a long time ago. he got blisters on his feet and no-one seemed to know what caused them, more bandaging
and finally they healed and now they are back., probably a drug reaction. He is on Revlimid and hasn’t taken anything else so far
and has survived 10 years, so there is hope for you. Just hang in there and don’t worry about being a little upset with the meds and what mm has done to you. Your are a survivor and each day is one more day to celebrate
Take good care of yourself and know you are not in this alone.
Ozys (caretaker)

Hi there, I have no idea about your diet and exercise habits but I found that a diet high in vegetables and fruit, keeping my weight down and regular
exercise is really helpful. I read so many good books on this and it seems that if I keep my immune system in optimal condition then I am at a good place to fight the cancer even with conventional treatment.

Hi:
We are using a lot of fruit also, but hubby is not able to exercise, too weak. The problem we are having is that he doesn’t want to eat meat and that is what he really needs right now, so I have been keeping nuts beside his chair as a snack and I think that helps a little. Otherwise, the ten years that he
has survived is a really good thing. All in all,with the new drugs, one can live a fairly decent life.
Take care, Ozys

@ozys

Hi:
We are using a lot of fruit also, but hubby is not able to exercise, too weak. The problem we are having is that he doesn’t want to eat meat and that is what he really needs right now, so I have been keeping nuts beside his chair as a snack and I think that helps a little. Otherwise, the ten years that he
has survived is a really good thing. All in all,with the new drugs, one can live a fairly decent life.
Take care, Ozys

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Can I ask why he needs meat? Is it for the protein?

I read many books on good eating for cancer patients and then went to books on healthy eating for heart patients.
Everyone resulted with PLANT BASED eating. I took from the readings what I found palatable. For every new food I added, I removed one bad food, It took a month before I made a complete overhaul of my eating patterns.

I eat a can of sardines each morning = 23-25 grams of protein.( p.s. not packed in water but oil) Yuck to sardines? Go for a small can of tuna or salmon. Super protein kick starter for the day. seeds, nuts and beans are loaded with protein,also.

Greek yogurt has 12-15 grams of protein. Mix in fruits of choice, etc. Check the protein count on the label.

I eat chia, flax and hemp and sprinkled into almost everything I eat daily, including salads, soups, guacamole dip. Almost everything .

Quinoa and Ferro are a wonderful substitute for rice.

HEALTHY fats are great. I eat at least 3 avacados a week. Either in a salad or as a guacamole dip or right from its shell/skin.

Bottom line, I lost 30 pounds the first 3 months and had no idea how. All I knew I was changing my eating lifestyle for my health. I was stuffing myself like a piggy and was never hungry. And yet the weight was falling off. It is the combination of all these foods. All those seeds ‘beating’ each other up internally. And this was without exercise.

Further get rid of the carbs. I eliminated all breads and pasta. I eat sprouted bread made by Ezekial . I eat Lundberg rice cakes as a substitute for crackers..

To date I am down 49 pounds and have kept it off for 2 1/2 years. It works.

I also found that changing my eating lifestyle was something where I had complete control. .

@ozys

Hi:
We are using a lot of fruit also, but hubby is not able to exercise, too weak. The problem we are having is that he doesn’t want to eat meat and that is what he really needs right now, so I have been keeping nuts beside his chair as a snack and I think that helps a little. Otherwise, the ten years that he
has survived is a really good thing. All in all,with the new drugs, one can live a fairly decent life.
Take care, Ozys

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You might be interested in reading and adding to this discussion on Connect:

– Healthy diets for cancer patients http://mayocl.in/208vukD

Thank you! Is there a nutritionist at Mayo 56St Phoenix?

@ozys

Hi:
We are using a lot of fruit also, but hubby is not able to exercise, too weak. The problem we are having is that he doesn’t want to eat meat and that is what he really needs right now, so I have been keeping nuts beside his chair as a snack and I think that helps a little. Otherwise, the ten years that he
has survived is a really good thing. All in all,with the new drugs, one can live a fairly decent life.
Take care, Ozys

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Hi everyone on diet:
My husband has such an aversion to food, I am lucky to get him to eat at all. So since he really needs the protein and the doc’s do not
want him to lose weight, our solution is a steak once a week, if I am lucky. He doesn’t like a lot of the things that he used to eat. When the veggies are in for the summer, that is an option. We live in Northern Michigan and do not have the fresh gardens here, all is shipped in and not always that good. Melons are about the only thing he will eat now, so use pineapple, and (mandarins) This is a
challenge for all those on chemotherapy and dexamethosone. which really screws up the taste buds, plus my husband had a lifetime
of radiation therapy for the sinus cancer which they thought existed without a biopsy in 07. The radiation was done at a local hospital
and God Bless Mayo who we finally got to see and they corrected all the bad stuff but we’re left with the very limited appetite. Such is
the life of a cancer patient who happens to get the wrong prescription.
So glad everything is working for you and losing weight is always a good thing, I just did it since I knew the caring was going to get
more intense as time goes by, only veggies, chicken and chocolate for me and I have lost 30lbs and feel great, so can relate to the
healthy eating thing.
Ozys

@ozys

Hi:
We are using a lot of fruit also, but hubby is not able to exercise, too weak. The problem we are having is that he doesn’t want to eat meat and that is what he really needs right now, so I have been keeping nuts beside his chair as a snack and I think that helps a little. Otherwise, the ten years that he
has survived is a really good thing. All in all,with the new drugs, one can live a fairly decent life.
Take care, Ozys

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It was interesting to me to read your post. My wife’s tastes for foods and appetite were a constant yo-yo and like trying to fit jello in a balloon! Most days it just didn’t work no matter what I tried! 🙂

Foods she loved all her life suddenly were off limits. Others would sound good to her, but by the time I cooked them she couldn’t make herself eat them and often the mere aromas were off-putting to her.

Kind of felt like juggling, but never knowing what it was I was trying to keep in the air — or on the menu.

Strength and peace,

I was told to take calcium and 5000mg of Vitamin D every day. Unfortunately, it nauseates me so I only take it once a week. I am surprised you are not having MRI’s quarterly to check for lesions.

Hi Jan52241 Yes, we were on a hugh dosage of Vitamin D every day and then the doctor wanted him to back off to 400units a day which is working
a little. We haven’t been out to Mayo for a while and I think because my hubby is an older patient and doing so well on Rev/dex with very low numbers,
they really don’t want to do more right now. We have to go locally to a hematologist until we can get over to Mayo.
I am interested in learning more about velcade? Is it given in a clinic and what it is the delivery system, how often and so forth. We may be headed
in that direction in future and we really don’t know anything about that drug?
So any help would be appreciated.
Ozys

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