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Tue, May 12 2:55pm · Are you getting cancer treatments during COVID-19? in COVID-19

My concern is about precautions, not about postponement. I check in with Mayo's hematology doc twice a year for guidance. But my chemo treatments are done locally, a three hour drive from Mayo. I get infusions for 7 days on, then 21 days off. Those 7 days are frightening.

My local oncologist has a very loose disinfecting program. People go in and out the door, touching on door handles, the door, the door jamb – then they fail to use hand sanitizer, even though there is hand sanitizer in sight. There's no one watching to make sure they sanitize. The front desk lady – when she has a chance every hour or so – sprays and wipes door handles and the countertop at the window to her desk. With the same cloth she keeps laid on top of the spray bottle between wipedowns. There are no signs or notices to tell patients and caregivers exactly how to conduct themselves to help prevent virus spread. Nothing.

No one sanitizes the chair arms or the toilet rooms. Patients and caregivers sit in the waiting room, sometimes pull their masks down for comfort; no one is making sure they wear them properly or keep them on. Caregivers are not allowed into the infusion room where I'm told sanitizing takes place between patients; but seeing how the waiting room is handled, I have doubts about the procedure.

I am frustrated. I wear a mask, a shield, disinfectant wipes on my hands, a bottle of disinfectant spray in my pocket which I use every time I touch something with my wipe-covered hand. I spray my shoes after leaving, before I get into my car.

Imagine what would happen if I told the doctor all he's failing to do to prevent COVID-19 virus spread. I'd never have a decent relationship with him again, no matter how nicely I present this.

Tue, Jan 28 4:37pm · Hodgkin's & non-Hodgkin's Lymphoma: Is it familial? in Blood Cancers & Disorders

My husband has MDS red-cell blood cancer after handling Roundup for many years back in the day when it was sold as a "perfectly safe chemical; you can wash your hands in it if you're out in the field; you could even drink it and be safe". I have contacted several law firms that handle NHL Roundup claims. They all say they handle only NHL cases; and that there's not enough evidence – yet – to link Roundup to MDS. Stay tuned, I believe research will continue to reveal MM, MDS, and other cancers connected to Roundup.

Mon, Jan 20 7:12pm · Is anyone here talking Revlimid for chemo? If so please share with me in Blood Cancers & Disorders

Revlimid started helping my husband immediately – his hemoglobin and other levels increased within a week. But he developed a serious rash of welts over most of his body – an allergic reaction we could not control with Benadryl & Claritin. He had to stop Revlimid. Meanwhile his Neutrophils and White Blood Count dropped so quickly it was alarming. Oncologist put him on Levofloxican for 20 days. His WBC and Neutrophils are slowly climbing back up. Watch for all white cell levels, stay away from sick people, carry hand sanitizer, be careful! The upside is that if Revlimid works, the side effects are manageable.

Dec 28, 2019 · Myelodysplastic Syndrome (MDS) in Blood Cancers & Disorders

I posted more detail here, just a few posts below…. Revlimid reaction after 15 days – a significant rash, severe enough to discontinue. That was after Procrit failed – my husband – he had weekly Procrit injections at 40,000 units from March 2018 – November 2019. He has been severely fatigued since December 2017 prior to the diagnosis, never having regained enough energy to live a "normal" life. He can walk about 100' at a time, then fatigue sets in. Sometimes he cannot even walk that far. He sleeps 5 or so hours during the day, sleeps all night, wakes up tired, stays tired all day, and cannot perform routine tasks. His hemoglobin now hovers around 8, sometimes going as high as 8.3 during the last six months.

A bone marrow assay with full DNA sequencing at Mayo revealed the 5q about 8 months after the initial bone marrow aspiration which was non-specific but suggested MDS. We are told my husband will be on Vidaza (because Procrit and Revlimid failed) until Vidaza fails, an unknown period of time; then transfusions. We are realists about this, knowing there is no cure, and that his condition will become progressively worse. Too old for stem cell – age 78.

Dec 28, 2019 · Myelodysplastic Syndrome (MDS) in Blood Cancers & Disorders

My husband was Dx'd with MDS 5q deletion during March 2018. After 67 weekly Procrit injections at 40,000 units. Procrit failed in October 2019. During all that time his hemoglobin never rose above 9.5, and during the last several months it hovered around 8. He started Revlimid when Procrit failed.

After 15 days on Revlimid a slight rash turned progressively worse; the rash and raised skin welts were so severe they could no longer be controlled with Benadryl and Claritin. And his white cells & neutrophils were severely compromised – we were advised that would happen. The oncologist put him on 20 days of Levofloxican (spelling?) as a precaution. But…. his energy was much improved in spite of nearly every blood level being significantly out of range, with hemoglobin at 8. The oncologist said there are four ways to treat 5q deletion: Procrit, Revlimid, Vidaza, transfusions. Then hospice. Does anyone have information from hematologists or oncologists that suggest other treatments can be successful?

In November 2019 a port was surgically placed and he started Vidaza. His energy is somewhat improved after just one 7-day cycle. But the oncologist advised Vidaza would produce no improvement for at least 2 1/2 months. We are confused, surprised, and grateful. He starts the second cycle on January 6th, at which time a blood draw will reveal his hemoglobin level, neutrophils and all the rest. He is 78 years old, not a candidate for stem cell.

I will try to come back here soon to read more, and will be more specific about things as I learn more about treatment. We are reminded by the Mayo hematologist and our local oncologist that "everyone is different"… that Vidaza can work for a couple months, or not at all, or for years. We take it one day at a time.

Sep 10, 2019 · Myelodysplastic Syndrome (MDS) in Blood Cancers & Disorders

Does anyone here have experience with 5q deletion?

A little background:
My age 77 husband was Dx'd with 5q deletion (a chromosome that's damaged – part of it is missing) one year ago after two bone marrow biopsies and DNA sequencing. His September 2018 biopsy revealed 5q deletion in 67% of nuclei; associated with either de novo or therapy-related MDS or AML (with AML ruled out); myeloblasts under 5%; erythropoiesis megaloblastoid and slightly dysplastic; no myelofibrosis; lymphocytes and plasma cells normal. His bone marrow makes too few red blood cells, they're too large, and they die off too soon; resulting in low hemoglobin counts and excessive fatigue.

Since June 2018 he has had 60 weekly CBC draws, and 60 Procrit injections at 40,000 units. Hemoglobin at Dx in September of 2018 was 8.5 and has risen briefly as high as 10.4; usually hovering in the low 9s. His oncologist normal range is 11.5 to 17.1 and his Mayo hematologist normal range is 13.2 to 16.5. Today he is at 8.1, having fallen from 9.4 in mid-August. His oncologist feels he is nearing the end of ability for Procrit to stimulate red blood cell production. But both the local oncologist and Jax Mayo are unable to predict what "usually" would be the next step, maybe Revlimid.

So… here's what we are interested in:
We see the Vidaza, Procrit, and transfusion discussions. and we're interested in the progression of therapies. We haven't seen posts here discussing Revlimid or Luspatercept. Anyone have experience with Revlimid? We understand that Dr. Rani Komrojki at Tampa's Moffitt has done studies with Luspatercept it's waiting for FDA approvals, and that Luspatercept may be useful for red-cell cancers in addition to the conditions in the studies.

Does anyone have experience with discussions with doctors about Luspatercept possibilities for stimulating red blood cell production or longevity?

Does anyone have a fix on the possible progression from one drug to another as red-cell diseases progress and as therapies fail? Wondering if Vidaza would be the logical next step, or Revlimid, or something else to postpone the need for transfusions.

Reading here, it seems the once per week Procrit injections are a very heavy dose – when some people are able to stay at a decent heme level getting injections every four or five months. We're anticipating a Procrit fail in the next couple months; doctors will of course recommend what to do next, but also wondering how others have dealt with the transition and possibilities for success.

We would never have known the specific Dx had Mayo not done DNA sequencing. We had no idea this should have / could have been done on the first bone marrow aspiration biopsy.