[Kathy Stermer]

Liz, Revlimid will not “cure” by any means but many respond favorably. I unfortunately did not after a year and many dose adjustments. Your specialty pharmacy that would be supplying it should have a financial person to help with cost as there are foundations and also an organization called PAN – Patient Assistance Network that you can apply for help based on income which helped me with cost of drug. I also chose to take a daily low dose aspirin while on it as blood clots the biggest risk while taking it. Hope this helps.

[Kathy Stermer]

Have not heard of both drugs being used at the same time before. Are you at a Center of Excellence for treatment? Hopefully being followed carefully by care team and they are aware of what’s going on.

[Kathy Stermer]

Don, it’s unbelievable to me that an institution would not listen and respect a patients wishes especially with a history of adverse effects of opioids. I have had 3 biopsies done in the clinic with just some versed as a minor relaxant. The key is to get the practitioner who does the most biopsies who can be quick and thorough. I have requested this same person every time. It would seem to me a frank discussion with the anesthesia provider or whom ever is providing sedation should be able to accommodate your wife’s needs. I am followed at the University of Minnesota and they are more than willing to work with you based on the patient. As a 35+yr health care provider, it’s very disconcerting that providers don’t listen and respect that patients may know more than them as it relates to their bodies and what is safe and in their best interest. Continue to be your best advocate in this issue and best of luck. I’m sure you’ll find an institution that puts the patient first.

[Kathy Stermer]

I have had a low white count since last year 😷 taking voriconazole, antibiotic levaquin and anti viral acyclovir. My experience with starting the voriconizole is visual changes that last about an hour after taking.

[Kathy Stermer]

I see revolade as a bone marrow stimulant but as I’m fairly new have not seen any postings about this drug. Maybe the moderator has some info?

[Kathy Stermer]

Is the drug revolade or is it Revlimid?

[Kathy Stermer]

Nancy, I had one nosebleed the first week of Vidaza which quit quickly as my platelets dropped to 36. Low platelets can most certainly make you more susceptible to bleeding and everyone has a different threshold. Hopefully your care team is aware and addressing the issue. Nosebleeds and bleeding in the mouth makes you more susceptible to swallowing some of that blood which can cause nausea and even blood to eventually show up in your stool

[Kathy Stermer]

Another thought I had… I usually had patients request to have their ports placed by The Interventional Radiology department vs surgeon as we seemed to have more issues with ports placed by surgeons ie difficulty with access, placed on a tilt creating difficulties or placed too deep in the chest causing difficult access. The goal is to make it as easy as possible for patients and caregivers.

[Kathy Stermer]

I can’t address as a port patient but am a MDS patient and nurse who has many years experience in working with ports. They are wonderful for those who have none or run out of usable veins due to caustic properties of chemo or other drugs that can damage veins. That being said, it is a foreign body placed in your body which has potential for infection, blood clots at end of catheter, can be difficult to access based on placement location, practitioner experience or anatomical variables such as body size. I’ve had patients who’ve had them in for years with minimal issues and others who have experienced some of the above issues listed. Weigh the pros and cons and discuss with your docs on what’s best in your case.

[Kathy Stermer]

The guidelines have come from clinical research and data from around the world. As to whether they need to follow them, doctors use their best judgment and knowledge from their practice and those they collaborate with to use them as a guide when deciding on treatment. As this disease is so variable, each individual may or may not respond to a specific treatment and working with your physician including being an active participant in your care is essential. Just my take.

[Kathy Stermer]

Yes Malissa it’s all very stressful for both you and your husband. I find dizziness for me means my hgb is low and usually need blood. A BMB would be the likely next step to find out what really is going on in the marrow. If he is becoming much more symptomatic I personally would push to get it done sooner rather than later to know where you stand.

[Kathy Stermer]

Thanks for the info Amy! Always looking for natural ways to treat vs more drugs and have heard the GI side effects can be brutal.

[Kathy Stermer]

Tried Revlimid for a year without results except counts got worse and became transfusion dependent. Now on Vidaza but after only 2 cycles had another bone marrow biopsy which showed disease stable but Vidaza dose needed adjusting. Starting my 4th cycle this month and hoping for some progress soon. It’s all dependent on the specifics of your disease and trying to find what works which can be as variable as each of our own marrow makeup. Won’t be a cure but hopefully will have some quality time (indeterminate) as I’m already opting out of a transplant if it eventually comes to that. Know there is hope for the Vidaza but that it will not work forever.

[Kathy Stermer]

It’s my understanding that TP53 in MDS has a less favorable prognosis and more likely to advance to more serious disease. The occurrence of MDS showing up after chemo and radiation is also a risk as the treatments for other cancers not only treat the primary cancer but can destroy the bone marrow in the process. Hopefully you have a good and knowledgeable physician treating her and a palliative care service can help with some of the effects of the disease and also help improve her quality of life. Best of luck as this disease can be a real bugger to live with.

[Kathy Stermer]

The injections are meant to be given in the subcutaneous part of the skin (more superficial than an intramuscular injection) one thing to consider with a port, it is not without possible complications. As it is a foreign body placed in the upper chest you may be at higher risk of infection (especially with low immune counts) and the incidence of blood clots around the catheter is a very real possibility. This should be carefully considered and discussed with your physician if being considered.

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