In September I began noticing itchiness around my entire body, which I found mildly concerning since itchiness was an initial symptom of my HL. I decided to shrug it off until October when I had a follow up MRI (for spine oncologist Dr. V) and a follow up appointment with bloodwork with Dr. M.
In the October appointments, both my bloodwork and MRI came out great, not indication of relapsing HL. I advised Dr. M of the itchiness but based on the results of my bloodwork and MRI, she was not concerned, simply recommending that I keep my skin moisturized.
From October to December, my itchiness was persistent and seemed to slowly be getting worse. I also noticed wrinkly bags appear under my eyes. I tried 24 hour Claritin and then 24 hour Zyrtec, which did not seem to help. I tried a variety of skin lotions and creams, including those with "analgesics", none of which seemed to help at all
In mid-December I consulted a dermatologist, advising her of my past of HL, and she felt that the chemo may have caused my skin to become more sensitive. She recommended:
1. Using soaps with absolutely no dyes, fragrances or additives, recommending a few brands.
2. Doubling my dose of Zyrtec, to 2 pills a day.
3. Prescribed a cortisone type cream.
Ultimately none of these resulted in any appreciable improvement of the itchiness. The cream applied under the eyes did seem to reduce the wrinkly bags.
I contacted the MSK lyphoma team via online portal, advising that I had a 2 week vacation planned from 12/27/19 to 1/11/20 to Brazil. I was optimistic that symptoms still were not indicative of relapse, so I just noted that the itchiness was a nuisance and asked if there was something they could prescribe to minimize it, especially being that I was going to a hot climate that I thought may worsen the itchiness.
Upon receiving my message, the team was concerned and recommended that my 6 month follow up CT scan (scheduled for late January) be bumped up to December before I left.
I had my CT scan on 12/23, and on 12/26 Dr. Moskowitz called and advised that the CT scan indicated signs of relapse. The new tumors were in my lower neck and my chest. She encouraged that I go enjoy my full 2 week vacation in Brazil, and upon return she would have a PET scan and biopsy set up for the following week. Biopsy would be to confirm that we were still dealing with HL, and that the disease had not somehow changed to NHL (details as to how this would happen, I still do not understand). She remained optimistic that the chances of completely curing me were extremely high.
So I went to Brazil and enjoyed myself, disappointed about relapse and the need for additional treatment, but not too concerned about my ultimate fate.
Upon my return from Brazil I had my PET scan on Monday 1/13, and my biopsy on Thursday 1/16 (of the chest tumor).
On Wednesday 1/22, Dr. M called to confirm the biopsy indicated HL, and discuss the standard next treatment for relapsed HL:
- 2 cycles of GVD (4 weekly treatments, with a 1 week break in the middle). She encouraged me to consider an ongoing clinical trial, combining immunotherapy drug with the GVD treatment.
- Around mid-March, hospitalization for a week straight of chemotherapy treatment combined with an autonomous stem cell transplant (ASCT), meaning my own stem cells would be harvested then returned to my body. The ASCT is neccessary because the chemo is so harsh, my body will require stem cells returned to replenish those damaged by the chemo treatment.
- Immediately after chemo / ASCT, 2 weeks further in the hospital for observation and resolution of side effects.
- After the 3 weeks in the hospital, return home for a full 2 months or more (!!!). Due to my weakened immune system, I need to stay home to reduce risk of infection.
During the call she also asked if I would like to try steroid Prednisone to see if it helps reduce itchiness, to which I said yes (Prednisone was very effective at reducing my back pain after HSS Dr. L prescribed in Jan 2019, before I started chemo). Ultimately after 5 days of use I determined Prednisone (and probably nothing but chemo itself) was not improving itchiness. Dr. M concurred at my next appointment.
On 1/28/20 I had my pre-chemo appointment with Dr. M. I formally signed off to be part of the clinical trial which entails use of the immunotherapy drug “pembro” to facilitate the effectiveness of GVD chemo to get be back into remission quickly. Dr. M explained that pembro + GVD had gotten 25 of 26 patients to date to remission in just 2 cycles (4 treatments over 6 weeks), compared to a rate of only 50%-60% when GVD is used alone. This is a significant improvement so I signed up.
Dr. M showed me a PET scan image from 1/13, showing several very clear lymph nodes with cancer (all black spots in my torso, see photo here). She diagnosed my current condition as Stage 2 HL, as I had expected.
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