Forums
7 posts
• Page 1 of 1
Revlimid maintenance and low white blood counts
Hello. I've been on Revlimid maintenance since transplant (10 mg) for about six months, and my white blood counts have steadily dropped — with slight increases during my "off treatment" weeks but never to normal limits. My white blood count is currently 2.4 (normal range 4.5 - 11). At what point would a change in dosage or medication be necessary—Does anyone have experience with this? I'm concerned that my oncologist will want to stop treatment. I appreciate any responses from others who have experienced this.
Re: Revlimid maintenance and low white blood counts
My husband has low white blood counts, too. He's been on 10 mg of Revlimid for what seems like forever. He gets occasional injections of Neupogen the day after his treatment of whatever drug he's been getting along with the Revlimid and dex. The 21 days on, 7 days off dosing schedule of Revlimid helps his white count recover, too.
-
Anonymous
Re: Revlimid maintenance and low white blood counts
My husband is 7 months post transplant and on 10 mg maintenance Revlimid. He also has low WBC which has ranged from low of 2.4 to 3.2 but rarely above that since he started maintenance. We discussed lowering dose or stopping for a few weeks, etc. Both our doctor at Dana Farber and his local doctor at Yale said that as long as he wasn't suffering from respiratory infections or other issues, they preferred he stay on the dosage and we just monitor it. So far his immune system has been fine even with the low WBC. He is careful about washing hands and eating and exercising to keep himself healthy. He hasn't needed neupogen shots. His ANC did get as low as 1.1 so we tested blood again 2 weeks later and it was up to 1.8 - so we are keeping on.
We are leaving in a few weeks for an overseas trip and both doctors have said that he should stop taking Revlimid while we are gone (which is a week). Since that's right after his week off from the drug - he will actually be two weeks off. It will be interesting to see what his WBC is when it's tested again after we get back.
I would think that if you are not having increasing infections, your doctor will not stop treatment. Our experience has been less about the actual # of WBC and more about how my husband is actually feeling and coping.
We are leaving in a few weeks for an overseas trip and both doctors have said that he should stop taking Revlimid while we are gone (which is a week). Since that's right after his week off from the drug - he will actually be two weeks off. It will be interesting to see what his WBC is when it's tested again after we get back.
I would think that if you are not having increasing infections, your doctor will not stop treatment. Our experience has been less about the actual # of WBC and more about how my husband is actually feeling and coping.
-
Nanjeanne - Name: Nanjeanne
- Who do you know with myeloma?: My Husband
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 66
Re: Revlimid maintenance and low white blood counts
My sister has completed her first cycle of Revlimid maintenance after her autologous stem cell transplant. Now her white blood cell (WBC) count is too low to start the second cycle, according to her oncologist. It is currently 1.9 and her oncologist wants it to be at least 3. She was taking 25 mg of Revlimid daily. The doctor does not want to reduce the dose at this time and sent my sister home to try and increase her WBC count before starting the second cycle. She did not want to prescribe medication. She did not explain what would happen if the numbers do not improve or how long to wait for them to improve. My sister did not seem to have a good supportive dialogue with her doctor to ask questions.
Any input would be great. What usually happens or is done is this situation? Also, is there a way to boost the WBC count? She is eating a diet that is supposed to be good for WBC count, but any personal experience is welcome.
Thank you!
Any input would be great. What usually happens or is done is this situation? Also, is there a way to boost the WBC count? She is eating a diet that is supposed to be good for WBC count, but any personal experience is welcome.
Thank you!
-
Gala - Name: Gala
- Who do you know with myeloma?: sister, LgA-k
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 48
Re: Revlimid maintenance and low white blood counts
I have dealt with a low white count every month while on Revlimid. My doctor even dropped my dosage to 5 mg, which seemed to help, but I would still get infections too frequently. She started me on monthly IVIG infusions and I have not been sick once! Nor have I had to take Neupogen shots that would only increase my white blood cell count temporarily.
Good luck and I hope this helps!
Good luck and I hope this helps!
-
Lisa Stephenson - Name: Lisa Stephenson
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 61
Re: Revlimid maintenance and low white blood counts
Lisa, thank you very much for sharing your experience. Interestingly, my sister has not had any infections yet. However, her white blood cell counts are so low that the doctors are worried. She has now gone 10 days without maintenance and a lower dose Revlimid will only be prescribed on Monday (they have shortages in Russia for particular dosages). She will have another blood test on Saturday to check if the WBC counts have gone up. She decided to start with 25 mg dose if the counts are OK, in case 15 mg is not available, as she is scared to go without medication. I will definitely pass on the information about IVIG infusions!
-
Gala - Name: Gala
- Who do you know with myeloma?: sister, LgA-k
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 48
Re: Revlimid maintenance and low white blood counts
Update: we still have not resolved the issue. My sister has been prescribed methyluracil tablets. I've included information about the medication below; it doesn't seem to be a medication that is used regularly outside of Eastern Europe and Russia.
The doctor expected her to improve within 5 days. Today she has had a blood test and her EBC are still at 1.8. She has now gone for three weeks without maintenance and she is quite discouraged.
She is seeing her doctor on Monday and wants to ask to go back on Velcade instead. They decided against Velcade for maintenance because of neuropathy, but the neuropathy she has now developed while on Revlimid is much more severe. Not sure the doc would put her on Velcade with such a severe neuropathy, though. So, we are a bit confused as to which road to go.
They have not discussed Neupogen shots or IVIG yet.
Methyluracil:
Anti-inflammatory, stimulates the healing agent, it is also used to treat radiation sickness.
Pharmacological action
Pyrimidine derivative. The drug stimulates cellular enzymes, amplifying division cell growth.
It is also known that the drug has anti-catabolic, anabolic effect, stimulates the production of red blood cells, white blood cells, accelerates the healing of cells triggers cellular, humoral immunity and has a mild anti-inflammatory effect, increases resistance to oxygen deficiency, blood loss.
Product form
Methyluracil release tablets Methyluracil candles, powder, ointment Methyluracil.
Indications
Methyluracil instructions for use in chronic, acute radiation sickness, mild leukopenia (caused by radio-chemotherapy, X-ray), aleukia alimentary toxic, chronic benzene poisoning, sore throat agranulotsitarnoy, pancreatitis, blood loss, non-healing wounds, trophic ulcers, bone fractures, burns.
Also, the means used in the treatment of gastrointestinal ulcers, chronic gastritis, for the prevention, treatment of local lesions of the female genital organs, radiation injuries of colon, sigmoid colon, radiation vaginitis, cystitis.
Contraindications
Methyluracil of instruction is not suitable for tumors in the digestive tract malignancy, chlamydia, chronic and acute forms of leukemia, leukemic, if hypersensitivity.
Ointment Methyluracil can be combined with applications of antiseptics, antibiotics, sulfonamides.
Instructions for use
Tablets Methyluracil take after / during a meal.
Adults show take 0, 5g of the drug four p / day (if needed - 6p / day). Babies 3-8l. allow to 0, 25g; children after 8l. - 0, 25-0, three p 5g / day.
Treatment of diseases of the digestive tract takes 30-40dney therapy for other indications shorter.
Methyluracil ointment
For the treatment of skin lesions, inflammatory bowel straight, sigmoid colon arising after radiation therapy, comprehensive treatment practice: prescribers, pills and ointment or candle methyluracil.
For the treatment of burns, trophic ulcers, wounds using 10% ointment. It is applied to the affected area every day 5-10gr for 15-30dn.
When ray dermatitis, late radiation damage vaginal cream applied with a loose swab.
When proctitis, ulcerative colitis, inflammation of the colon sigmoid use rectal suppositories Methyluracil.
Adults appoint administered 1-4 candles every day, detyam3-8l. - 0, 5 candles, children 8-15l. - One candle each day. Treatment lasts from one week to four months.
In these diseases can be used microclysters containing 0, 2-0, 4gr. of active ingredient.
Side Effects
Methyluracil can cause dizziness, allergic rashes, headaches. Rectal suppositories may cause a short burning sensation.
Squeak of side effects increases with prolonged use methyluracil
The doctor expected her to improve within 5 days. Today she has had a blood test and her EBC are still at 1.8. She has now gone for three weeks without maintenance and she is quite discouraged.
She is seeing her doctor on Monday and wants to ask to go back on Velcade instead. They decided against Velcade for maintenance because of neuropathy, but the neuropathy she has now developed while on Revlimid is much more severe. Not sure the doc would put her on Velcade with such a severe neuropathy, though. So, we are a bit confused as to which road to go.
They have not discussed Neupogen shots or IVIG yet.
Methyluracil:
Anti-inflammatory, stimulates the healing agent, it is also used to treat radiation sickness.
Pharmacological action
Pyrimidine derivative. The drug stimulates cellular enzymes, amplifying division cell growth.
It is also known that the drug has anti-catabolic, anabolic effect, stimulates the production of red blood cells, white blood cells, accelerates the healing of cells triggers cellular, humoral immunity and has a mild anti-inflammatory effect, increases resistance to oxygen deficiency, blood loss.
Product form
Methyluracil release tablets Methyluracil candles, powder, ointment Methyluracil.
Indications
Methyluracil instructions for use in chronic, acute radiation sickness, mild leukopenia (caused by radio-chemotherapy, X-ray), aleukia alimentary toxic, chronic benzene poisoning, sore throat agranulotsitarnoy, pancreatitis, blood loss, non-healing wounds, trophic ulcers, bone fractures, burns.
Also, the means used in the treatment of gastrointestinal ulcers, chronic gastritis, for the prevention, treatment of local lesions of the female genital organs, radiation injuries of colon, sigmoid colon, radiation vaginitis, cystitis.
Contraindications
Methyluracil of instruction is not suitable for tumors in the digestive tract malignancy, chlamydia, chronic and acute forms of leukemia, leukemic, if hypersensitivity.
Ointment Methyluracil can be combined with applications of antiseptics, antibiotics, sulfonamides.
Instructions for use
Tablets Methyluracil take after / during a meal.
Adults show take 0, 5g of the drug four p / day (if needed - 6p / day). Babies 3-8l. allow to 0, 25g; children after 8l. - 0, 25-0, three p 5g / day.
Treatment of diseases of the digestive tract takes 30-40dney therapy for other indications shorter.
Methyluracil ointment
For the treatment of skin lesions, inflammatory bowel straight, sigmoid colon arising after radiation therapy, comprehensive treatment practice: prescribers, pills and ointment or candle methyluracil.
For the treatment of burns, trophic ulcers, wounds using 10% ointment. It is applied to the affected area every day 5-10gr for 15-30dn.
When ray dermatitis, late radiation damage vaginal cream applied with a loose swab.
When proctitis, ulcerative colitis, inflammation of the colon sigmoid use rectal suppositories Methyluracil.
Adults appoint administered 1-4 candles every day, detyam3-8l. - 0, 5 candles, children 8-15l. - One candle each day. Treatment lasts from one week to four months.
In these diseases can be used microclysters containing 0, 2-0, 4gr. of active ingredient.
Side Effects
Methyluracil can cause dizziness, allergic rashes, headaches. Rectal suppositories may cause a short burning sensation.
Squeak of side effects increases with prolonged use methyluracil
-
Gala - Name: Gala
- Who do you know with myeloma?: sister, LgA-k
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 48
7 posts
• Page 1 of 1
Return to Treatments & Side Effects