Intimate relations post-bone marrow transplant

Oftentimes, I begin writing a blog with an idea of what I want to say, when instead I start typing and something totally different comes out.  Today is one of those days!  I wanted to only give an update on how Todd was doing, but then the issue of intimacy came to mind.

At yesterday's treatment appointment (Day +41), Todd's blood work showed that his platelets went up to 50,000 which is a milestone than many patients and spouses look forward to reaching.  No intimate sexual relations are allowed with platelet counts under 50,000, so this is a positive step in returning back to a normal life.  Cancer can put a real crimp in married life or with any intimate relationship.  Chemotherapy drugs and side effects can be transmitted through intercourse. Many patients have had months of chemotherapy prior to transplant, making this a concern for a long period of time.   I can't speak from a female with cancer's point of view, but according to the Cleveland Clinic's handout on sexuality post-transplant, many women experience vaginal dryness and/or changes in hormones.  (Cleveland Clinic Foundation, 1995-2012).  According to a Danish Study reported by the MDS Beacon, there is also research that suggests that some transplant patients suffer from some type of sexual dysfunction, including increased erectile dysfunction in men. (MDS Beacon, 2011).

While this is a personal subject, it is an issue that must be addressed.  Regardless of any prior birth control measures, condom use is recommended post-bone marrow transplant to prevent transmission of dangerous medication side effects to the spouse, and to prevent even the slightest possibility of a yeast infection. (BMT patients are highly susceptible to any kind of yeast infection anywhere in the body). To make light of the situation, it was funny to be 45 years old, married 23 years, with Todd having had a vasectomy 10 years ago, but still having to buy condoms!

Both the BMT patient and the spouse can have a mixture of fears and feelings when it comes to their intimate relationship.  After recently speaking with another wife of a transplant patient, the lack of sexual intimacy for months can bring feelings of sadness and loneliness.  Being the caretaker, the spouse often feels more like a nurse of a fragile child instead of an intimate spouse.  Kissing alone can be scary for the spouse, for fear of spreading the simplest of germs.  For the transplant patient, stamina, fatigue, and overall energy levels are low to begin with; thoughts of intercourse can be more challenging. Some experience sexual dysfunction or for women, vaginal dryness which can add frustration to the situation.  (MDS Beacon, 2011).  Then, there are self-image issues to deal with.  The loss of hair and/or weight/muscle, can leave the patient feeling less sexually attractive.  

The good news: For most patients and spouses, "This too shall pass."  As blood counts comes up, energy levels come up too.  Once platelets reach 50,000 or greater, sexual intercourse can resume when the patient feels ready for it.  Hair re-growth and weight gain will eventually return to normal adding self-esteem along the way.  There are many medications that doctors can prescribe for dysfunction or hormonal issues.  Patience is key!

For more information:

Cleveland Clinic Foundation (1995-2012). Resuming Sexual Activity after Bone Marrow Transplant.
https://my.clevelandclinic.org/health/treatments_and_procedures/hic_Bone_Marrow_and_Transplantation/hic-resuming-sexual-activity-after-bone-marrow-transplant

MDS Beacon (2011). High Rates of Sexual Dysfunction. Retrieved from: http://www.mdsbeacon.com/news/2011/09/15/high-rates-of-sexual-dysfunction-reported-after-stem-cell-transplantation/

Day 6: The treatment that almost didn't happen

We arrived at the Cancer Treatment Center in Kettering, Ohio, not sure of our appointment. Todd said over the weekend that he didn't think they had us on the schedule for today, and I responded, "Why wouldn't they?"

Sure enough, we showed up on Monday morning at 8:00 am and they had no treatment scheduled. The nurse said they never do more than 5 days of treatment of Vidaza. We had never heard of this! Our bone marrow doctor in Cleveland told us it would be a 7 day treatment, 5 days one week and two the next week. 

The nurse waited until the local oncologist came in to ask him what he was going to do. Meanwhile, I called Cleveland Clinic to ask them what treatment had been prescribed. They said usually the treatment is 7 days, but that some doctors do 5. 

By this time the nurse had returned with orders from the local oncologist saying she was to go ahead and give it to him if that is what the doctor at Cleveland said to do. This isn't the first problem we've had with the local oncologist. (I will write a separate post about this). 

I relayed this to Cleveland and they said to do the seven days if he is going to administer it. 

Being the first time we had heard of a five day treatment, I decided to Google it. My favorite "go to" source, the MDS Beacon, came up with a story dated May 2013 that spoke of a  study conducted in Portugal where the treatment center  used 5- day treatments because of limited staff scheduling. While the study didn't find the 5-day treatment to be necessarily inferior, it is NOT the recommended treatment regimen in the United States or Europe, nor is was there enough data at that time to recommend a 5-day treatment over the 7-day standard.  (O'Reilly, McHale, et al, as cited in Engle and Haehle np). 

Gillian Lush, another writer of the MDS Beacon, wrote in 2009 about a information submitted by Garcia, de Miguel, and Bailen, et al. where "three different dosing schedules were studied, each on a 28-day cycle."  It was found that:

"Of the three groups, the overall response rate of group C (who had 7 days of consecutive treatments)was the highest at 74 percent. Group A (5 day only treatment) showed a response rate of 58 percent, and group B (who received Vidaza on days 1, 2, 3, 4, 5, 8, and 9) showed a response rate of 65 percent." (Lush n.p. Parenthetical statements added).

Todd's treatment regimen would  be considered: Treatment on days 1-5, 8 and 9. This is done because facilities are not open for treatment on Saturdays and Sundays, which would be considered days 6 and 7.

I'm not saying that there is more evidence, trials, or published studies that the Kettering doctors relies on that I haven't read, because he obviously may know more that I don't.  However, looking at these two studies from a layman's point of view, we chose to stick to our guns and insist on seven days of treatment.  If he is going to go through all the sickness and side-effects of the Vidaza, he might as well go for the treatment with the better results. 

In addition to treatment, they finally drew Todd's blood to review his counts.  They are supposed to check your blood work every three days, but for some reason, this was the first time in six days that they took his blood.  His platelets were about the same, but still low.  His white counts had dropped quite a bit, but this is usually expected as a side-affect of the chemotherapy. 

After treatment, he got out for a bit and then went home to rest.  He is still having issues with digestion and nausea, but they did give him the Aloxi today, which we hoped would be a big help.  He has lost weight and I'm still pushing him to eat whenever I can. 

Tomorrow will the last treatment for now. 



References:

Engle, Elizabeth and Haehle, Maike. "Five-Day Vidaza Dosing Schedule May Have Similar Efficacy In Higher-Risk MDS As Seven-Day Dosing." The MDS Beacon. Light Knowledge Resource., 29 May 2013. Web. 12 May 2014. http://www.mdsbeacon.com/news/2013/05/29/5-day-vidaza-azacitidine-higher-risk-myelodysplastic-syndromes/

Garcia, de Miguel, Bailen, et al. "Different Clinical Results with the Use of Different Dosing Schedules of Azacitidine in Patients with Myelodysplastic Syndrome Managed in Community-Based Practice: Effectiveness and Safety Data From the Spanish Azacitidine Compassionate Use Registry " Poster. 2773. 3 December 2009. Web. 12 May 2014.
https://ash.confex.com/ash/2009/webprogram/Paper21649.html

Lush, Gillian.  "Approved Vidaza Dosing Schedule May Be Better and Safer Than Alternatives (ASH 2009)."  MDS Beacon.  Light Knowledge Resources. 14 December 2009. Web. 12 May 2014.
approved-vidaza-dosing-schedule-may-be-better-and-safer-than-alternatives-ash-2009