Inqovi

• Author
  Posts
• May 1, 2023 at 6:41 pm #61834
  Lynn Minnis

  Participant

  What are the next steps or treatment options when Inqovi stops working? I was doing very well on it for 26 doses and it suddently stopped working and all my numbers took a nosedive. Where do I go from here?

  June 4, 2023 at 9:57 am #63228
  Lynn Minnis

  Participant

  My MDS journey has reached an end. I was initially diagnosed in Nov. 2018 and started on Revlimid. When that was no longer effective, I started Inqovi every 28 days and went to every 5 weeks in late 2022. My last dose was March of 2023 and my numbers tanked at my April check-in. A bone marrow biopsy revealed Acute Myeloid Leukemia and the prognosis is not very promising. Still in the testing phase to find an appropriate treatment. Hoping to hear more this week.
  Thanks for answering my post. Good Luck with your treatment.

  June 4, 2023 at 10:46 am #63229
  Michael Collins

  Participant

  I started Inqovi in August of 2022. My first three months were both Inqovi and Venetoclax which clobbered my blood counts. Took three months for my platelets to recover. Cycle four to cycle seven has been Inqovi only which I just completed. I also wonder what happens after Inqovi stops working. I will ask my doctor next Friday. MD Anderson is prescribing my treatment as I live in Indianapolis and my hospital is affiliated with them. Haven’t seen very many posts about Inqovi since it is a new drug. Also follow Facebook sites CMML Friends and Fight Myelodysplastic Syndrome. Did see a post recently about some one who had been on Inqovi for over four years and it was starting to wane so must of been part of the original clinical trial.

  November 2, 2023 at 11:43 am #66542
  Beatrice Newcomb

  Participant

  I am 73 and will be starting Inqovi this week for my MDS. I also have aplastic anemia, CIDP and Stage 3 kidney disease. I am already fatigued from my other illnesses so I really don’t know what to expect. How much more fatigued can I get?

  I am keeping a positive attitude and hope the med works to keep me going.

  November 7, 2023 at 5:09 pm #66570
  Ashley Moncrief

  Moderator

  Hi Beatrice,

  Thank you so much for reaching out.

  Fatigue is a real problem for those with MDS. It is sometimes hard for other people to understand because, unlike normal tiredness, it is not made better with sleep. Make sure you talk to your doctor to see what they recommend.

  We have found that the following can help with MDS related fatigue:

  – Exercise: I know that exercising is probably the last thing you feel like doing, but a little bit goes a long way. Try taking a walk or some other low-intensity activity in the mornings; you may find it helps with your energy level throughout the day. Exercise is the single most important thing you can do to battle fatigue.

  – Making Lists: It can help to make a list of the things you need to do, prioritize them by level of importance, and then take it one at a time. This can help make sure that what has to be done is at the top of mind.

  – Limit daytime naps to less than 1 hour. Extended naps can make it harder to sleep at night.

  – If you notice things like anxiety or depression are making it difficult to sleep, talk to your healthcare provider to see there are medications or specific strategies that can help.

  – Eat small, frequent meals rather than heavy ones. People often feel more tired after large meals.

  – Ask for help when you need it; we all need help at some point. If you are needing to devote a lot of energy to work, ask for family and friends to help out around the house to give you time to rest.

  Most importantly, give yourself some grace. It is hard to accept that you cannot do things you once did, but make sure you take time to acknowledge all you are accomplishing.

  I hope this helps! Please let me know if there is anything more we can do. Happy to help!

  Ashley

  November 26, 2023 at 7:50 pm #66651
  Owen Maguire

  Participant

  I was diagnosed with MDS in Oct 2012. Watch & wait. Had surgery in May 2013 and Hm/Onc prescribed Antibodics. Don’t think they were given and ended up with massive infection which led to 2 transfusions which eventually got me back to watch and wait. 2015 Hem took a dive and placed on self injection with Eprex to bring Hem up . 2017 blood readings in WBC, Platelets, Hem all went down and placed on Vidaza 7 days and 21 off. Have been on Vidaza until Aug 2023 when stomach inje tion sites were not healing. Placed on Inqovi 5 days & 28 days off. All CBC readings went down drastically. Went to 3 pills alternate days and 28 off but blood readings look similar. Have appointment with Hem/Onc in 2 days and looking to go back to Vidaza. I live in Suburb of Calgary, Alberta Canada and know of various ways Vidaza is given in US. Here it is strictly in the stomach. Am not a fan of Inqovi but will let you know what is prescribed.

  December 18, 2023 at 5:18 am #66748
  Heinz

  Participant

  Hi Owen,
  may I ask which therapy your Hem/Onc has decided on?
  Heinz

  December 22, 2023 at 12:07 am #66792
  Owen Maguire

  Participant

  Hi Heinz

  Completed my 3rd cycle of Inqovi a couple of weeks ago. 3 pills on alternate days and 23 off. Similar drop In CBC but rise in all categories CBC over the next couple of weeks is much quicker than before. I get my blood taken every Friday morning and have results through App on my phone by the afternoon. Also am being monitored by nurses at Cancer Centre and get a phone call every few days wanting to know what if any side effects I am experiencing. Fatigue ( Much greater than with Vidaza is my reply) My Hematologist/Oncologist assures me based on her experience with other patients that we are heading in the right direction. Hope we get there soon.

  December 23, 2023 at 7:03 am #66795
  Heinz

  Participant

  HI Owen,
  thank you for your information. You are obviously very well looked after. Although I have no personal experience with inqovi, I am very interested in the course of your illness. I am amazed at the 6 years of Vidaza use, for example. I took Vidaza for 2 years and then stopped because it no longer worked for me.
  Among other things, I would be interested to know how high your blasts were/are and whether you have a normal karyotype or certain mutations.
  Perhaps you would like to exchange information about our experiences with the disease via private mail?
  mds-foundation.handlebar036@passfwd.com
  I record my blood values graphically, perhaps you would be interested in this?
  First of all, I wish you and all MDS patients a Merry Christmas.
  Heinz

  February 27, 2024 at 5:17 pm #67025
  Owen Maguire

  Participant

  I regret not replying to` Heinz before now but a number of circumstances prevented it. The day after Xmas I came down with a severe cold and when I used the home test kit I was positive for my second bout of Covid. Not as severe as my last bout but much longer lasting. My daughter and son-in-law had flown here for Xmas and she stayed an extra 2 weeks and nursed me. I missed my next cycle of Inqovi. When I recovered I returned to visiting my wife in the long term care facility where she resides 3 days a week and while I mask up a respiratory infection started up and I succumbed to this but was not severe. Went back to Inqovi and my Oncologist decided that my 5th bone marrow should be done to see what was going on. Had the Bone Marrow and appointment with Oncologist today. Finally some good news.All of the Bone Marrow Cell Differential results were within normal range.. Some examples. Blasts 2% ; Plasma Cells 2%; Neutrophils and Bands 25%; Lymphocytes 9% Monocyte 2%. My CBC results Hem; Pl, WBC ,, etc continue to be well below normal at the end of the Inqovi cycle but they are recovering much faster than before. Tiredness sill a problem but I am forcing myself to ride 30 minutes 4 days a week on my stationary bike,although very slowly. We decided today I would continue on Inqovi.

  March 1, 2024 at 4:16 am #67030
  Heinz

  Participant

  Hi Owen,
  You’ve had a bad one. With our weakened immune systems, we are unfortunately always at risk of infection. Fortunately, you have now overcome this problem and can get back to the main oncological problem. The result of your bone marrow biopsy is very encouraging, especially the blast count of 2%. I now wish you a successful return to Inqovi therapy.
  My platelets are the biggest worry for me. They are very volatile, have just dropped to 30 again, but have also been in single figures. However, I haven’t had any problems with petechiae or bleeding so far. If I could ride an ergometer 4 days a week like you, I would be very happy. After what used to be 5 days of 30 minutes each, I can only manage 10 minutes on 2 days and that despite reduced performance. So we have to keep fighting. I wish you every success.
  Heinz

• Author
  Posts