Compressions Pumps for Lymphedema and Stage 4

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cowgal
cowgal Member Posts: 833
edited September 2021 in Stage IV/Metastatic Breast Cancer ONLY

I have pretty significant lymphedema that I have been dealing with since my initial breast cancer diagnosis in 2010. The bone met in my collarbone has made it worse. My lymphedema therapist has been trying to get a pump ordered for me for on and off for years with the last effort being about a year ago and I am guessing at the time, due to COVID maybe the company never contacted me because they couldn't get the parts. Well, it is time for me to get some new compression sleeves and gauntlets and my MO wrote out the prescription for these and also a pump again.

I read something that for Stage 4 that a pump isn't a good idea. I asked my MO about this and he said if it helped my lymphedema out than he had no trouble with it. I was curious if any stage 4 patients were using pumps or if they were told they were bad for our situation? Also, if you have a pump do you have a Flexi-Touch or a sequencial pump and if you have knowledge of both, which do you prefer?

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  • BlueGirlRedState
    BlueGirlRedState Member Posts: 1,031
    edited September 2021

    Cowgal - I do use a biocompresion pump and Tactile Flex pump. I like both. I started with the biocompression pump, and when things were not improving much, the LE suggested the flex touch. Both were prescribed before MBC. Nobody has said anything about not using them now. I'm wondering how they could make things worse when it is already about as bad as it can be. The biocompression pump is more portable since the unit is smaller and just has a sleeve. The flex touch unit is larger and the garment includes shorts as well as the torso. If you go with Tactile, it would be worth it to see if there is a local "trainer' to go over with how the garment fits. The one that came to my house agreed with me that the hoses did not clip in/out of the unit easily, and Tactile replaced everything. Another garment/compression sleeve that might help is a Tribute foam compression sleeve and glove that is worn at night. It makes your arm look as if it had been in waffle iron, but I think it helps keep it soft so lymph can flow. The glove is really bulky, and I often use a regular compression glove with a little medifoam in it. With the Tactile, I bought a cheap suitcase at a thrift store to keep everything in one place when not in use. and make it more portable if I will be somewhere else for a week or more.

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  • cowgal
    cowgal Member Posts: 833
    edited September 2021

    Thanks BlueGirlRedState. I do have a Tribute night garment that I wear every night. I think the Tributes are good for either a year or a year and a half. If its a year, then I will be getting a new one of those at the end of this year.

    I read in one of the books I have on lymphedema that pumps were not good for stage 4. I was puzzled by that as well since with stage 4...isn't the horse already out of the barn? Besides that, we patients with lymphedema are already doing manual lymph drainage and compression garments to move lymph flow so what harm would a pump be doing? I had my routine MO appointment Wednesday and asked him about it and he said if a pump helped me with the lymphedema then to do it. Currently, I am at NEAD.

    This whole pump issue has been a frustrating multi-year problem. My doctor fills out the prescription, my lymphedema therapist contacts the pump company and in the end the company always drops the ball. For several years it was Flexi-Touch that would drop the ball. Their rep even lied to me on the phone and said my therapist had never contacted him and when I told the therapist what he said, she showed me the back and forth email. Even with me contacting him, I never got a pump! My therapist thinks that the rep didn't want to be bothered with coming out to a rural area to train me on the pump and I had even offered to go to my therapist's office each day for the training but evidently that is still too rural. Finally, after several years, my lymphedema therapist said she wanted to order me a sequential (I assume that is what you are calling tactile?) pump and would order it from Sun Medical. They were supposed to contact me directly and they never did. I don't know if they got slowed down by the pandemic and couldn't get parts but they never called me. I don't know if Flexi-Touch has ever replaced there area rep and if this one will be any better than the rest. I know they say they will train anywhere but clearly they have reps that will not travel to the middle of the Oklahoma Panhandle.

    If I understand you correctly, you don't prefer one pump over the other so in my case, I may need to pick out whichever one will actually send someone to come and train me on the unit?


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  • BlueGirlRedState
    BlueGirlRedState Member Posts: 1,031
    edited September 2021

    Cowgal - I had problems contacting Tactile this year, our message machines talked, but it took a while to talk to a "real" person. When I did, problem was immediatley resolved. Maybe they had staffing issues with Covid. The first contoller, a disc popped off, one of the slots for a hose. It had always been problematic. Tactile immediately replaced the controller. With the new controller I had the same problem, a different disc popped off. Since a free trainer was available where I lived, I asked her to come out. I wanted her to check whether the garment was "snug" enough as well as check attaching the hoses. She agreed that they were difficult and sent a note to tactile, which I think is why they replaced the garment as well as the controller. Pros & Cons of the biocompression pump vs Tactile. Tactile top has an arm as well as a partial chest and shorts. So more of the lymph system is getting pumped. It is sequential, starting with the abdomen/upper thighs if wearing the shorts, then moves to the arm. It is on a program timer. It feels much more gentle/less pressure than the biocompression pump, even though they are both set at the same "pressure". I've been told that gentle is good, and it should not feel like squeezing the last bit of toothpaste from the tube. If you do much traveling, the Flextouch(Tactile) is much bulkier. The garment is similar to the Tribute so there is variation. The Biocompression pump is easier to use, just a simple sleeve, easier to travel with. It does not come with a timer, so don't doze off. Sometimes I wear the Tribute sleeve with the Biocompression sleeve for more & varied compression.

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  • cowgal
    cowgal Member Posts: 833
    edited September 2021

    Very helpful information! Thanks again!

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  • Micmel
    Micmel Member Posts: 9,450
    edited September 2021

    if you need a pump. Call Connie cares. Just google it. I have one through them and it didn't cost a dime. They brought to my house. I have it from my lymph node removal. It helps me tremendously. If you can't get one from your doctor. Then that's another resource….

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  • cowgal
    cowgal Member Posts: 833
    edited September 2021

    Thanks Micmel! I had not heard of Connie Cares. I will try that if my lymphedema therapist is unable to get the pump companies to fill my MO prescription for the pump yet again!

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