[Ashley Moncrief]

Hi,

Sorry for the delay! Having the mutation (TET2) puts a person at risk for the disease (MDS). Not everyone who has the mutation will develop MDS; it just means the risk is higher. It could be possible that they had the mutation and never knew since it never led to MDS in their cases.

[Ashley Moncrief]

Hi Dan,

I’m so sorry to hear about your father’s situation. A drop in the white blood cell count is common with the azacitidine/Venetoclax combo. In fact, it can stay down longer with the combination than when azacitidine is given by itself. That doesn’t mean that the medication is not working; it could be that the marrow is taking longer to recover. It’s a fine line between giving enough chemo to keep the MDS at bay and giving too much chemo that makes it harder for the marrow to make healthy cells. The bone marrow should tell you more.

I saw an article recently on the American Society of Clinical Oncology’s website about the use of Ven/Aza in high-risk MDS. In the study they cover, response rates were up to 80% with a duration of response around 16 months. 24% of the patients in that trial had a TP53 mutation.

If you are interested in looking at potential clinical trials, I would check out our clinical trial portal SparkCures. I put the link below. I do not believe there are any targeting TP53 right now, but there might be other studies he would qualify for. You can reach out to the staff there and they can help you narrow down the options.

https://mdsf.sparkcures.com/

I hope this helps! Sending positive thoughts your way!

[Ashley Moncrief]

Hi Helen,

I reached out to Taiho who makes Inqovi. They have a “What to Expect” section on their website that covers side effects. I put the link below. I know it’s not the same as hearing from someone who’s been there but maybe it will help a little.

https://www.inqovi.com/side-effects

Have a great day!

[Ashley Moncrief]

Hi Cindy,

I’m so sorry to hear about your situation. If you are looking for a clinical trial, you can try our clinical trial portal. I put the link below. The staff there are great and can help see if you might be eligible.

https://mdsf.sparkcures.com/

I hope this helps!

[Ashley Moncrief]

Hi Cindy,

I’m so sorry to hear about your situation. If you are looking for a clinical trial, you can try our clinical trial portal. I put the link below. The staff there are great and can help see if you might be eligible.

https://mdsf.sparkcures.com/

I hope this helps!

[Ashley Moncrief]

Hi Traci,

Has she tried luspatercept or lenalidomide? Clinical trial may also be an option. I put the link to the portal below.

https://mdsf.sparkcures.com/

Ashley

[Ashley Moncrief]

Hello,

Just wanted to let you know that if you are interested in a second or even third opinion from a hematologist, we would be happy to help connect you with someone. Feel free to give me a call at 1-800-637-0839 ext. 210 or email me at amoncrief@mds-foundation.org.

Ashley

[Ashley Moncrief]

Hi Rok,

We have a few patients who have gone through transplant and are willing to share their stories. If you are interested in speaking with one of them, give me a call at 1-800-637-0839 ext. 210 or email me at amoncrief@mds-foundation.org.

Hope all is going well!

Ashley

[Ashley Moncrief]

Hi Gary,

Thanks so much for reaching out. The most common side effect I hear about is fatigue. It can be hard because your numbers may start to rise but you don’t see an increase in energy right away. Some of the other more commonly reported side effects include muscle/bone pain and dizziness. The side effects typically do get better with time. Talk to your doctor about your side effects because changing the dose may also be a possibility.

Bristol Myers Squibb is the company that makes Reblozyl. They have a patient hub called Your Reblozyl Connection. I highly recommend signing up because it gives you information tailored to where you are on the treatment journey. I put the link to join below.

https://www.reblozyl.com/mds/how-reblozyl-works/why-reblozyl?cid=sem_2785260&gclid=c23696c0e3f214cc62d8f1624dde5b0f&gclsrc=3p.ds&msclkid=c23696c0e3f214cc62d8f1624dde5b0f

I hope this helps!

Ashley

• This reply was modified 2 months, 2 weeks ago by Ashley Moncrief.
• This reply was modified 2 months, 2 weeks ago by Ashley Moncrief.
• This reply was modified 2 months, 2 weeks ago by Ashley Moncrief.

[Ashley Moncrief]

Hi Tammy,

We would be happy to help with getting a second opinion set up. Feel free to give me a call at 1-800-637-0839 ext. 210 or email me at amoncrief@mds-foundation.org.

Thanks for sharing the information Sheila. I was going to say the same thing about zinc.

Sending positive thoughts your way!

Ashley

[Ashley Moncrief]

Hi Carrie,

Unfortunately, I am not aware of anything you can take as far as herbs or natural remedies to increase your MDS-related low white blood cell count. There are injections your doctor can prescribe, but there are also risks associated with getting them. I hope this helps!

Ashley

[Ashley Moncrief]

Hello,

I just wanted to reach out. I looked for clinical trials with Venetoclax in combination with other therapies for MDS in Australia. Unfortunately, there are no active trials. AbbVie is the company that makes Venetoclax. Would you like me to reach out to my contacts there to see if they have any upcoming trials?

Ashley

[Ashley Moncrief]

Hi Nancy,

I’m so sorry for all you are going through. If there is anything we can do to help, please let me know.

Ashley

[Ashley Moncrief]

Hi Roderick,

Clonal cytopenia of unknown significance or CCUS is not MDS but does progress to MDS in a large number of cases (upwards of 80% of cases in a 10-year period). A germline mutation is one that is inherited, while somatic mutations are acquired overtime. TET2 mutations are one of the most frequent mutations found in MDS pre-cursor conditions such as CCUS. The risk of progression to MDS depends on a number of factors such as how frequently the mutation is seen (known as a variant allele frequency) and whether or not other mutations are present. The key takeaway is that monitoring is needed to catch progression early should it happen. I’m glad to hear your oncologist has you on a schedule to get lab work done. I hope this helps!

Ashley

[Ashley Moncrief]

Hi,

Just curious if you had a bone marrow biopsy before the pain started. When they go in to get the sample, there are nerves that can get irritated. Those nerves continue down your leg. It might be worth asking your doctor about.

Have a great day!

Ashley

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